Medical Forum / Diseases and Disorders / Lupus / May 2005
Another "Could it be lupus" question.
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William R. Thompson - 03 May 2005 09:19 GMT Hello, everyone.
A lot of the problems I've had sound like lupus symptoms: heavy fatigue, joint and muscle pain (lasts for days or weeks), mouth sores (usually small and painless), rashes (not the malar rash; usually it's skin flaking off my face and arms), and my hands will go cold and numb. In addition there are nose bleeds and some creative bleeding (spots on my skin, one or two millimeters across, will open up), plus stomach cramps and diarrhea. All of this happens after I've been in the sun, spent too much time under flourescent lighting or in front of a CRT, or had any alcohol.
I know all of this sounds like lupus, but one problem I have that doesn't match the list of symptoms is this: my temperature will drop one or more degrees (sometimes down to 95 F/35 C). When I go to see the doctor this month should I ask him about lupus, or should he look at something else?
I had an ANA test about ten years ago. I don't know what the numbers were; the doctor would only tell me "the numbers were too low for lupus." I went through a porphyria misdiagnosis after that, and I've seen two therapists who both decided it isn't psychosomatic.
Any advice or suggestions will be greatly appreciated.
--Bill Thompson
herbwormwood - 03 May 2005 11:09 GMT > Hello, everyone. > [quoted text clipped - 24 lines] > > --Bill Thompson You may want to look into Antiphospholipid Syndrome, there is a lot on the net about it. I am not sure whether it relates to sun sensitivity or not but the circulatory issues could be related. How are you if you stay away from UV light and abstain from alcohol? There is a yahoo group for Antiphospholipid Syndrome which is very freindly and lots of people in it do not have diagnoses. I also often have a low temperature 35 to 36 but I do not monitor my temperature often enough, I think 36 is normal for me. Any chance your temperature drop is related to your core temperature just falling naturally, when you are inactive and in a cold place? I think that happens with me. My extremiities go purple blue and white! The extreme sun sensitivity looks like a good clue. Can you focus on that in your quest? Let us know what you learn!
William R. Thompson - 04 May 2005 09:27 GMT (snip)
> You may want to look into Antiphospholipid Syndrome, there is a lot on the > net about it. Thanks; I've looked at some sites. I'm not sure if it would apply to me. I've never had a stroke or other sign of thrombosis, as far as I know. I don't think I qualify for "sticky blood," either. During a dental appointment a few months ago, the dentist said "Are you on a blood-thinning agent? You're doing a lot of bleeding here."
> I am not sure whether it relates to sun sensitivity or not but the > circulatory issues could be related. How are you if you stay away from UV > light and abstain from alcohol? I'm generally fine when I stay away from both. I've never been much for drinking, mainly because it always gave me cramps and the runs a few hours later. The dentist advised me to start using mouthwash every time I brushed my teeth, because my gums keep getting inflamed, but I had to give that up. Listerine is about 54 proof, and after a few days of that I felt fairly run down.
I've had odd reactions to various over-the-counter medications, but that happens to other people in my family.
> I also often have a low temperature 35 to 36 but I do not monitor my > temperature often enough, I think 36 is normal for me. Any chance your > temperature drop is related to your core temperature just falling naturally, > when you are inactive and in a cold place? That was one of the first things I thought of. My temperature normally runs 98.0 to 98.8 F (36.7 to 37.1 C). When it drops low enough I feel like someone has turned up the air conditioning too high.
> The extreme sun sensitivity looks like a good clue. Can you focus on that in > your quest? I have. The trail always comes back to lupus.
> Let us know what you learn! I will, thanks!
--Bill Thompson
BJ - 04 May 2005 14:37 GMT Hi Bill, Have you ever had your platelet level checked? The bleeding you experience with your gums suggests a possible problem there. Lupus affects my blood mostly, and has caused my platelets to drop as low as 6. ( medical emergency) Do you have a lot of bruising, by any chance? Also there are very mild mouth washes you can get. Listerine is strong enough to take the skin off a horse. I also wanted to mention body temperature. I am troubled with low temps too. I was in Toronto during the SARS episode a couple of years ago. I went to visit someone in a nursing home there. Nurses were taking the temp of anyone coming into the home. Mine was 35C. The nurse questioned whether or not the thermometre was working properly, and took my temp again. I often have a drop in body temp, accompanied by chills, when I am getting sick. That changes to fever later, but is an early sign. BJ-Sk. Canada
> (snip) > [quoted text clipped - 42 lines] > > --Bill Thompson William R. Thompson - 05 May 2005 09:01 GMT > Hi Bill, > Have you ever had your platelet level checked? No, but I'll put that on my list of things to ask the doctor.
> Do you have a lot of bruising, by any chance? No, but I don't do much to bruise myself, either. When I get these bleeding spots they don't bleed much, but some of them take a long time to heal.
> Also there are very mild mouth washes you can get. Thanks! I didn't know that; I thought they were all ethanol-heavy. I'll look for them.
> Listerine is strong enough to take the skin off a horse. True. At least the blue, Windex-flavored Listerine isn't as distasteful as the original brown variety.
> I also wanted to mention body temperature. I am troubled with > low temps too. I was in Toronto during the SARS episode a couple of years [quoted text clipped - 3 lines] > I often have a drop in body temp, accompanied by chills, when I am getting > sick. That changes to fever later, but is an early sign. I don't usually get fevers. My temperature will start to drop about six hours after I've had too much light. After a day or two it's back to normal, even when the other things drag on. I've tried various things to warm up when it's down (hot showers, thermal underwear, exercising) without any result.
--Bill Thompson
Beverley - 06 May 2005 13:45 GMT There are several mouthwashes that contain NO alcohol. Ask if you don't see it. How about a good sloshing with salty water? Bev
> > Hi Bill, > > Have you ever had your platelet level checked? [quoted text clipped - 33 lines] > > --Bill Thompson William R. Thompson - 07 May 2005 08:10 GMT
> There are several mouthwashes that contain NO alcohol. Ask if you don't see > it. How about a good sloshing with salty water? I'll try both of those, thanks.
--Bill Thompson
herbwormwood - 05 May 2005 10:35 GMT Bill, you don't have to have had a stroke or other obvious sign of thrombosis to have Antiphospholipid Syndrome. I have it fairly bad and I have neither stroke or thrombosis.. It was what you described as "creative bleeding" and your hands going cold and numb, which alerted me to the possibility. You say you have looked into it but there are blood tests which can show up the chance that you have it, so if I was you I would ask for them at your next review. To be honest you say you are generally fine if you stay away from alcohol and sun, so I would say it is probably something more specific to that rather than lupus or Antiphospholipid Syndrome. You say you have been checked for porphyria, was the check conclusive? How old are you? Have you always had this or has it just developed, and did you do anything different before it developed (new medication, holiday in the sun, for example?)
On Wed, 4 May 2005 09:27:49 +0100, William R. Thompson wrote (in article <42788745.8BD80C08@ix.netcom.com>):
> (snip) > [quoted text clipped - 42 lines] > > --Bill Thompson William R. Thompson - 05 May 2005 14:06 GMT
> Bill, you don't have to have had a stroke or other obvious sign of thrombosis > to have Antiphospholipid Syndrome. I have it fairly bad and I have neither > stroke or thrombosis.. Oh. I guess I misunderstood what I was readsing on the sites Google turned up.
> It was what you described as "creative bleeding" and your hands going cold > and numb, which alerted me to the possibility. You say you have looked into > it but there are blood tests which can show up the chance that you have it, > so if I was you I would ask for them at your next review.
> To be honest you say you are generally fine if you stay away from alcohol and > sun, so I would say it is probably something more specific to that rather > than lupus or Antiphospholipid Syndrome. > You say you have been checked for porphyria, was the check conclusive? Yes. I had tests by two doctors, and both times the results came back negative. (The first doctor told me that "negative results don't prove anything." Considering how fast she was to tell me I had one of the porphyrias, I have to wonder if she was eager to find a case.)
> How old are you? I turned fifty in March.
> Have you always had this or has it just developed, and did > you do anything different before it developed (new medication, holiday in the > sun, for example?) I'm not sure how long this has been going on. Thirty years ago the fatigue, pains and digestive problems were just annoying, and didn't last more than a day or so. It built up slowly. I'd always been underweight (six feet/182 cm. and about 135 lbs./61 kg), but I'd thought that was normal, even when my weight started swinging (between 140 and 125 pounds).
In 1996 I was diagnosed with skin cancer. It was easily fixed, but the way the doctor said "Stay out of the sun" made that sound like a very good idea (I have fair skin, the basic Irish blue, aside from some florid mottling on my face and neck).
After a month out of the sun I started to feel a lot better--no fatigue, no skin flaking, the digestive problems eased off, my hay fever vanished after twenty-five years and my weight went up to 160 pounds and stayed there (I know, everyone is supposed to complain about putting on weight, but it was nice to not see my ribs any more). Another two months and I realized I only had problems after I went out in the sun. I mentioned this to the dermatologist; he suggested lupus, ran an ANA test, and told me the results were negative.
No one in my family has ever had lupus. One of my brothers has had juvenile diabetes (type 1) since he was ten. One grandfather developed rheumatoid arthritis in his early fifties. One of my cousins was also pale and skinny, and plagued with digestive problems like mine, but Sherry never had a proper diagnosis before she died of cancer in her late thirties.
--Bill Thompson
J - 27 May 2005 12:24 GMT > No one in my family has ever had lupus. One of my brothers > has had juvenile diabetes (type 1) since he was ten. One [quoted text clipped - 3 lines] > had a proper diagnosis before she died of cancer in her > late thirties. Bill, can you find out what exactly she died of? Might be helpful. I'm concerned about you. J
William R. Thompson - 28 May 2005 07:44 GMT
> > No one in my family has ever had lupus. One of my brothers > > has had juvenile diabetes (type 1) since he was ten. One [quoted text clipped - 3 lines] > > had a proper diagnosis before she died of cancer in her > > late thirties.
> Bill, can you find out what exactly she died of? > Might be helpful. Sherry died of breast cancer about fifteen years ago. When she was a baby the family physician diagnosed her with celiac disease. There weren't any lab tests for it at the time. This diagnosis was based on the doctor's experience (he had seen it while working in the tropics during WW II) and Sherry's symptomology (failure to gain weight, and a foul, loose, pale, explosive diarrhea). She did better when she was put on a gluten-free diet, although I know she didn't stick to it when she was older. (I don't think anyone knows all the details of her health problems. Sherry hated to dump her problems on anyone.)
Her brother Gary has had thyroid problems all his life, and a few years ago he developed adult-onset diabetes. Her sister Linda died from leukemia about ten years ago. Cousin Ernie has always been in good health, as far as I know. This is all on my dad's side of the family. On mom's side, one of my cousins developed Hashimoto's disease about ten years ago, but everyone else is healthy.
> I'm concerned about you. Thank you.
--Bill Thompson
KCat - 05 May 2005 19:54 GMT > far as I know. I don't think I qualify for "sticky blood," > either. During a dental appointment a few months ago, the > dentist said "Are you on a blood-thinning agent? You're > doing a lot of bleeding here." just want to clarify here - APS does not mean you will clot easily. In fact, one of the seemingly contradictory symptoms is bleeding readily and bruising easily. This is in part due to the fact that platelet counts are often low with APS and also because the clotting mechanism itself is fouled up by the autoimmune condition. The "sticky" part refers to the blood cells sticking to each other and to vessel walls vs. circulating properly in the blood stream. this is different from the clotting response which is beyond the scope of this post.
herbwormwood - 06 May 2005 13:19 GMT >> far as I know. I don't think I qualify for "sticky blood," >> either. During a dental appointment a few months ago, the [quoted text clipped - 9 lines] > blood stream. this is different from the clotting response which is beyond > the scope of this post. APS =Antiphospholipid Syndrome.
William R. Thompson - 07 May 2005 08:13 GMT
> > far as I know. I don't think I qualify for "sticky blood," > > either. During a dental appointment a few months ago, the > > dentist said "Are you on a blood-thinning agent? You're > > doing a lot of bleeding here."
> just want to clarify here - APS does not mean you will clot easily. In > fact, one of the seemingly contradictory symptoms is bleeding readily and [quoted text clipped - 4 lines] > blood stream. this is different from the clotting response which is beyond > the scope of this post. Thanks for the info. I've looked at more antiphospholipid sites; there's enough to make me think I should ask the doctor about that possibility.
--Bill Thompson
BJ - 03 May 2005 14:52 GMT Hi Bill, I doubt a negative ANA test that is ten years old is enough to rule out lupus. I think you need to have a full blood workup. There may be other abnornalities that would lead to a diagnosis. Try to get copies of the results, so you can review them yourself. You can post them here, if you wish. Someone might be able to decipher them for you. I have found that a lot of doctors don't take the time to put the clues together. It is wise to monitor things yourself. BJ-Sk. Canada
> Hello, everyone. > [quoted text clipped - 24 lines] > > --Bill Thompson Andy - 03 May 2005 16:53 GMT In article <117f0m67jiuon3d@corp.supernews.com>, BJ <Babs@sk.nojunk.ca> wrote
>Hi Bill, >I doubt a negative ANA test that is ten years old is enough to rule out >lupus. I've just half-recalled something - isn't it true that having had Lupus for some years (or was it having had treatment for some years???) can make your ANA test give a negative result?
 Signature Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
William R. Thompson - 05 May 2005 09:06 GMT
> >Hi Bill, > >I doubt a negative ANA test that is ten years old is enough to rule > >out lupus.
> I've just half-recalled something - isn't it true that having had > Lupus for some years (or was it having had treatment for some > years???) can make your ANA test give a negative result? There's something I forgot to ask--what other test(s) should I ask for, after a negative ANA test? If this isn't lupus, I'd like to definitely rule it out.
I've never been treated for lupus, but when I had the test, the problem had already been going on for at least ten years.
--Bill Thompson
J - 06 May 2005 19:31 GMT > > >Hi Bill, > > >I doubt a negative ANA test that is ten years old is enough to rule [quoted text clipped - 10 lines] > I've never been treated for lupus, but when I had the test, > the problem had already been going on for at least ten years. Hi Bill, the other tests are here, under "Diagnosis" http://www.ghg.net/schwerpt/ASLFAQ/index.htm
If there's a rash, take a photo of it. If you can get to a dermatologist (before it disappears), perhaps they can biopsy it.
Are you on any medications? If so, what? And what reactions have you had to over the counters?
Any sign of Raynaud's (or something circulatory) usually shows in hands or feet Some older adults with rheumatic, nervous or circulatory conditions, such as arthritis or hardening of the arteries, suffer from Raynaud's Phenomenon. Smoking and some medications used to treat heart conditions or migraines can also cause this condition, which is unrelated to hypothermia.
When exposed to cold, small blood vessels in the hands and feet contract, blocking blood flow. The skin turns white, then blue, then red as circulation returns. The area feels numb or prickly. Doctors recommend that people with Raynaud's stay warm indoors and out, with socks, multiple layers of gloves and mittens, and scarves. Wear mittens when taking food from the refrigerator. Sufferers also must protect against injury to the skin and stop smoking.<>
I'm having an awful time with temperature drops (always have) and have to keep core warm. I do have Raynaud's/circulatory problems.
I think that bleeding stuff is called petechaie (sp?). I'm "allergic" to aspirin containing medications. There's a list of some causes here http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm If most of those have been ruled out, click on autoimmune, another list shows up. Addison's seems to list BP pressure problems, I didn't check everyone to see which fit.
What is your age? My uncle was diagnosed in his 60's after my brother recognized the signs and symptoms and told him to get to a doctor fast.
Anything else you may have learned to live with, that might help us figure it out.
J-looking for more clues
William R. Thompson - 07 May 2005 08:57 GMT > Hi Bill, the other tests are here, under "Diagnosis" > http://www.ghg.net/schwerpt/ASLFAQ/index.htm Thanks! I'll look.
> Are you on any medications? No.
> And what reactions have you had to over the counters? Usually it's cramps and diarrhea. That includes most pain killers (aspirin, acetaminophen, ibuprofen), large doses of vitamins (niacin gave me a seizure in addition to the digestive upset) and No-Doz. Ginko bilboa gave me the worst headache I've ever had. I tried Alka-Seltzer PM once, when a bad cold kept me from getting to sleep; something in it made me hallucinate. Most decongestants make me sleepy.
Some of my relatives have trouble with medications as well, which complicates the picture. My father, both of my brothers and I all throw up when we take Immodium A-D.
> Any sign of Raynaud's (or something circulatory) usually shows in hands or > feet [quoted text clipped - 11 lines] > from the refrigerator. Sufferers also must protect against injury to the > skin and stop smoking.<> Usually when I have to take something cold from the freezer I do a little finger-dancing, shifting it between fingertips before I put it down. I don't smoke, so I'm finally doing something right! I've learned not to grab anything ice-cold with my bare hands or in thin gloves.
My hands usually go numb when the fatigue gets heavy enough to make me pass out; I usually wake up when that happens. The trouble is that when I lie down I turn off the lights and take off my glasses, so when I wake up I can't check for any color changes. A few times I've seen my hands turn a dark, dull red when they're going numb. My feet will get cold, but they seldom go numb.
> I think that bleeding stuff is called petechaie (sp?). I'm "allergic" to > aspirin containing medications. Lately I've had trouble after using sunblock with octisalate and homosalate in them, as well as liniments with aspirin in them.
> There's a list of some causes here > http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm > If most of those have been ruled out, click on autoimmune, another list > shows up. Thanks again.
> Addison's seems to list BP pressure problems, I didn't check everyone to > see which fit. My blood pressure has always been normal or a bit below normal when it's tested. My pulse is normal as well.
> What is your age? Fifty.
> Anything else you may have learned to live with, that might help us figure > it out. Well, there are a couple of weird things. When I started avoiding the sun, I stopped chewing my fingernails, a habit I'd never managed to break. Plus, the smell of cooking beef always made me feel like I was being gassed; now that only happens after I've had some light. (These were things like pot roasts and stews; I don't know why steaks or hamburger didn't have the same effect. I very definitely do not miss that smell!)
> J-looking for more clues Same here, and thanks for the clues you've given me!
--Bill Thompson
J - 08 May 2005 17:41 GMT > > Any sign of Raynaud's (or something circulatory) usually shows in hands or > > feet [quoted text clipped - 24 lines] > > I think that bleeding stuff is called petechaie (sp?). I'm "allergic" to > > aspirin containing medications. Sounds to me that you do have Raynaud's
> [..] > [forget Addison's - my mistake - confused low BP with low temperature] [quoted text clipped - 8 lines] > why steaks or hamburger didn't have the same effect. I very definitely > do not miss that smell!) Hi Bill, I'd like to focus on this last paragraph, minus the fingernails. First I've heard of that. But we'll consider that minor for now.
On this face of it, it seems that things happen after you've been exposed to light and that may well be or it can be coincidental.
Just for safety's sake, I'm thinking of low-level and sometimes intermittent, carbon monoxide poisoning. Has this feeling of being gassed occurred in numerous places or just one place? Are there gas-powered appliances? stove; water heater; furnace; fireplace; drier; (etc)? J
William R. Thompson - 09 May 2005 04:52 GMT
> > Well, there are a couple of weird things. When I started avoiding > > the sun, I stopped chewing my fingernails, a habit I'd never managed [quoted text clipped - 3 lines] > > why steaks or hamburger didn't have the same effect. I very definitely > > do not miss that smell!)
> Hi Bill, I'd like to focus on this last paragraph, minus the fingernails. > First I've heard of that. But we'll consider that minor for now.
> On this face of it, it seems that things happen after you've been exposed to > light and that may well be or it can be coincidental.
> Just for safety's sake, I'm thinking of low-level and sometimes intermittent, > carbon monoxide poisoning. > Has this feeling of being gassed occurred in numerous places or just one place? > Are there gas-powered appliances? stove; water heater; furnace; fireplace; > drier; (etc)? > J This smell has only happened when someone's cooking beef. It's happened with electric ovens and stoves. The smell is really obnoxious, and it doesn't seem to have anything to do with spices, sauces or gravies cooked with the meat. It always ends after the heat is off and the meat has cooled. No one else has noticed the smell. The only time I ever mentioned it everyone else said, basically, "It smells great!" I always have to get some fresh air when it happens. It doesn't give me a headache or anything, but it's such an intensely bad stench that it makes me want to hold my breath.
I've never smelled anything like it when I'm around a gas-powered appliance, and I've been careful about CO.
--Bill Thompson
J - 09 May 2005 22:15 GMT > This smell has only happened when someone's cooking beef. It's > happened with electric ovens and stoves. The smell is really [quoted text clipped - 9 lines] > I've never smelled anything like it when I'm around a gas-powered > appliance, and I've been careful about CO. Hello Bill, I'm glad you're careful about CO.
There's more than a few here who have problems with scents or odd odours. So do I and others who don't have Lupus. Where in the heck are you? He's in British Columbia (western Province of Canada). The reason I'm asking is a year ago, my brother decided to stop eating meat; he thought it was worsening his skin condition. He's the one who'se ANA has been in the "something's up range' for oh, I'd say now 12-15 years and he can't get a referral to a rheumey. He's on some hairy'fairy wait list. Afraid to pressure his doctor for fear of losing him; afraid that if he gets there, it won't be Lupus (much ado about nothing).
Anyway, I'd swear you were my brother. <g> He's since restarted meat since I think he said he was feeling weak without it. He's also always had to sleep with the window open (in the coldest of weather even) and he's had problems with gassy scents. He had to quit a job that required frequent gas-ups for that and other reasons.
I guess this falls under similarities..altho I suppose if you're having seizures, odd odours can be troublesome. I saw that on TV once. J
William R. Thompson - 10 May 2005 06:50 GMT > There's more than a few here who have problems with scents or odd odours. > So do I and others who don't have Lupus. > Where in the heck are you? Ogden, Utah, which is about 40 miles/60 km. north of Salt Lake City.
> He's in British Columbia (western Province of Canada). > The reason I'm asking is a year ago, my brother decided to stop eating meat; he [quoted text clipped - 3 lines] > fear of losing him; afraid that if he gets there, it won't be Lupus (much ado about > nothing). I know the feeling. I did get to see a local rheumatologist in '97, but I was in good shape at the time and I got the impression he thought I was wasting his time. I tried to make an appointment with him again this year, but it's been so long since that last appointment that I have to see a regular MD to get a referral.
(This rheumatologist isn't the one who administered my ANA test. That was done by the dermatologist who took care of my skin cancer.)
> Anyway, I'd swear you were my brother. <g> He's since restarted meat since I think he > said he was feeling weak without it. He's also always had to sleep with the window > open (in the coldest of weather even) and he's had problems with gassy scents. He > had to quit a job that required frequent gas-ups for that and other reasons. I've had some other odors that bothered me pretty badly, but they never seemed too odd. For a while one magazine used an ink that stank and made my eyes water, but other people reported the same problem (someone said that it helped if you wrapped it in Saran wrap and put it in the freezer for a day or two. Happily the publisher stopped using that ink.)
I'm glad to hear your brother is doing better with the meat.
--Bill Thompson
J - 10 May 2005 09:51 GMT > I know the feeling. I did get to see a local rheumatologist > in '97, but I was in good shape at the time and I got the [quoted text clipped - 6 lines] > test. That was done by the dermatologist who took care of > my skin cancer.) Hold that for the moment. Utah's in (what I call) the sunbelt. J
William R. Thompson - 11 May 2005 10:37 GMT
> Utah's in (what I call) the sunbelt. Plus, I grew up in southern California, not far from the beaches. This was in the late Fifties/Sixties, when everyone was supposed to tan no matter how incompetent we were about it. My brothers and I would burn every summer, then peel one another's backs. We must have looked like blond monkeys searching one another for lice.
My brother Mark always burned worse than Matt or I did; he wound up with some large blisters one time.
--Bill Thompson
J - 13 May 2005 11:02 GMT > Plus, I grew up in southern California, not far from > the beaches. This was in the late Fifties/Sixties, [quoted text clipped - 3 lines] > backs. We must have looked like blond monkeys > searching one another for lice. Heehee.. I'm picturing that. I used to get a burn on purpose to get a tan. Now we know different, don't we?
> My brother Mark always burned worse than Matt or I > did; he wound up with some large blisters one time. So did I, under ultraviolet light. That stuff is nasty. Only 5-10 minutes. Mom was mad as hoppers at me. J
William R. Thompson - 14 May 2005 07:47 GMT
> > Plus, I grew up in southern California, not far from > > the beaches. This was in the late Fifties/Sixties, [quoted text clipped - 3 lines] > > backs. We must have looked like blond monkeys > > searching one another for lice.
> Heehee.. I'm picturing that. > I used to get a burn on purpose to get a tan. > Now we know different, don't we? I hope so! I remember being told that a sunburn was good for you. That first burn of the summer was said to build a good base for a nice, healthy tan. So did all the ensuing burns that summer (my best tan was usually easy to distinguish from a sheet of typing paper. Usually).
> > My brother Mark always burned worse than Matt or I > > did; he wound up with some large blisters one time.
> So did I, under ultraviolet light. > That stuff is nasty. Only 5-10 minutes. Mom was mad as hoppers at me. Insane as it sounds, we had one of those UV bulbs in the early Sixties. Someone must have decided that we didn't get enough sun in those southern California winters. We didn't use it much, though, and it went in the trash when there was talk about how overexposure to those sun lamps could cause nerve damage.
--Bill Thompson
J - 16 May 2005 08:00 GMT > > I used to get a burn on purpose to get a tan. > > Now we know different, don't we? [quoted text clipped - 5 lines] > usually easy to distinguish from a sheet of typing > paper. Usually). Ours just happened usually. We were usually outdoors from sunup till sundown. Except for meals and using the washroom.
> > > My brother Mark always burned worse than Matt or I > > > did; he wound up with some large blisters one time. [quoted text clipped - 4 lines] > Insane as it sounds, we had one of those UV bulbs in > the early Sixties. Same time frame. Dad rigged it up to help with his shoulder pain. But I decided to lie down and use it on the abdomen and legs. Gad, was that painful trying to get into tight jeans with the blisters and everything. I fell asleep with it on me. And I made the same mistake the next year. We lived near a river - the bestest burns/tans on the river (swimming, canoeing, chasing pollywogs etc)
> Someone must have decided that > we didn't get enough sun in those southern California > winters. We didn't use it much, though, and it went > in the trash when there was talk about how overexposure > to those sun lamps could cause nerve damage. Never heard that one. In what way? Numbness? J
William R. Thompson - 16 May 2005 11:59 GMT
> > Insane as it sounds, we had one of those UV bulbs in > > the early Sixties.
> > Someone must have decided that > > we didn't get enough sun in those southern California > > winters. We didn't use it much, though, and it went > > in the trash when there was talk about how overexposure > > to those sun lamps could cause nerve damage.
> Never heard that one. In what way? Numbness? I don't know; the problem was described only as "nerve damage." I was seven or eight at the time, and if there were any details I didn't pay attention.
--Bill Thompson
Andy - 10 May 2005 14:27 GMT In article <427FD309.8A4187C7@execulink.com>, J <seth@anon.ianon> wrote []
>Hello Bill, I'm glad you're careful about CO. > >There's more than a few here who have problems with scents or odd odours. >So do I and others who don't have Lupus. For those who don't know: CO (carbon monoxide) is a gas that can be produced by combustion with insufficient air. A common cause of this is inadequate or blocked air vents, chimneys or flues. CO is colorless and has no smell. When breathed, it displaces the oxygen from the blood, forming carboxyhaemoglobin which is bluish. One symptom of mild CO poisoning is a headache; severe CO poisoning rapidly leads to loss of consciousness and death.
[J: I realise you were referring to a different problem, ie intolerance of scents. Even I have that!]
 Signature Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
J - 10 May 2005 20:24 GMT > In article <427FD309.8A4187C7@execulink.com>, J <seth@anon.ianon> wrote > [] [quoted text clipped - 13 lines] > [J: I realise you were referring to a different problem, ie intolerance > of scents. Even I have that!] Hi Andy, I meant not confusing one for the other. http://groups-beta.google.com/group/alt.support.mcs/msg/915f5493bf937ab9
Similar happened to me in 1999. His was a few years earlier.
These types of things can play havoc with symptoms (and health) and doctors don't even think of suggesting checking for it. J
William R. Thompson - 04 May 2005 09:34 GMT
> Hi Bill, > I doubt a negative ANA test that is ten years old is enough to rule out [quoted text clipped - 4 lines] > lot of doctors don't take the time to put the clues together. It is wise to > monitor things yourself. Thanks. After the ANA test I did have a few other blood tests run by another doctor, but none of them were lupus-specific and the doctor said everything looked normal. I had been taking good care of myself and was in fine shape when I saw him; maybe I should have partied and worked on my tan beforehand.
He did tell me to come back the next time I got sick. That happened the next day, which was a Saturday.
--Bill Thompson
Styner - 04 May 2005 05:08 GMT I have SLE and have had many flare ups that began with low temps - as low as 95.6 for me. Doctors never really paid that much attention to it...but I always knew that it had to be one more item on the list of signs that my body was screaming for some kind of attention. Prednisone will lower temps, but it never really got them up any of the times mine was low. It shouldn't last, though. Not more that a couple of months, if I remember correctly.
William R. Thompson - 04 May 2005 09:43 GMT
> I have SLE and have had many flare ups that began with low temps - as low > as 95.6 for me. Doctors never really paid that much attention to it...but [quoted text clipped - 3 lines] > shouldn't last, though. Not more that a couple of months, if I remember > correctly. Thanks! I've felt like the only person in the world who's had his temperature drop. I think mine went below 95.0 F/35.0 C once, but at the time I wasn't in any shape to pay close attention. Whenever I mentioned it to doctors, it got shrugged off.
One doctor had me on prednisone for a few weeks, and it helped somewhat. Unfortunately the doctor didn't see a reason to pursue that (he was a combination of MD and psychiatrist, and I was seeing him as a therapist).
--Bill Thompson
J - 06 May 2005 21:58 GMT > A lot of the problems I've had sound like lupus symptoms: > heavy fatigue, joint and muscle pain (lasts for days or weeks), > mouth sores (usually small and painless), rashes (not the malar > rash; usually it's skin flaking off my face and arms), and my > hands will go cold and numb. In addition there are nose bleeds > and some creative bleeding (spots on my skin, one or two http://www.niddk.nih.gov/health/hematol/pubs/itp/itp.htm Purpura Saw nosebleeds mentioned elsewhere for purpura. A hemotologist could check that, I think. Having said that, John, who we haven't heard from for ages, has Lupus, and was having nosebleeds. I can't remember if it was the Lupus or treatment related. They would come on suddenly.
> millimeters across, will open up), plus stomach cramps and > diarrhea. All of this happens after I've been in the sun, > spent too much time under flourescent lighting or in front of > a CRT, or had any alcohol. When these events occur has your previous meal been like a person with prophyria - eat regular with carbs ? (or not) http://www.cpf-inc.ca/dietandcarbs.htm Were you tested during a period of worse attacks?
> I know all of this sounds like lupus, but one problem I have > that doesn't match the list of symptoms is this: my temperature > will drop one or more degrees (sometimes down to 95 F/35 C). > When I go to see the doctor this month should I ask him about > lupus, or should he look at something else? Seems to that any circulatory problem could cause that. I have to eat higher carb to keep my temperature up. Temperature is controlled in the brain also. Has your brain been checked?
Which type of skin cancer did you have? Some can recur elsewhere. And how was it treated?
> I had an ANA test about ten years ago. I don't know what the > numbers were; the doctor would only tell me "the numbers were > too low for lupus." Way too low isn't specific enough. We need numbers (then and now). Can you not get copies of your lab tests? Highly recommended.
> I went through a porphyria misdiagnosis > after that, and I've seen two therapists who both decided it > isn't psychosomatic. I was tested for porphria. (urine coollection and bloodwork) I'm not toally convinced that I don't have it. If I follow the porphyria eating guidelines, I don't have gastro attacks. Sounds to me that you might have lupus, with other side syndromes. J - not a doctor
William R. Thompson - 07 May 2005 09:18 GMT > http://www.niddk.nih.gov/health/hematol/pubs/itp/itp.htm Purpura > Saw nosebleeds mentioned elsewhere for purpura. [quoted text clipped - 3 lines] > I can't remember if it was the Lupus or treatment related. They would > come on suddenly. I've never been treated for lupus, and these nosebleeds were going on long before I suspected that.
> When these events occur has your previous meal been like a person with > prophyria - eat regular with carbs ? (or not) > http://www.cpf-inc.ca/dietandcarbs.htm > Were you tested during a period of worse attacks? I had a set of tests for various porphyrias during one attack. I'd gone in the sun for a few minutes to make sure there was something for the tests to see.
> Seems to that any circulatory problem could cause that. > I have to eat higher carb to keep my temperature up. > Temperature is controlled in the brain also. Has your brain been checked? No. It works moderately well most of the time. Well, I think it does. I've never found a link between my diet and my temperature, or any of this. I had several years where I thought the problem was food allergies, but eliminating various things from my diet didn't help.
> Which type of skin cancer did you have? Some can recur elsewhere. > And how was it treated? It was a benign, basal cell cancer. It was removed surgically. I've had about twenty precancerous lesions removed with a liquid nitrogen spray.
> > I had an ANA test about ten years ago. I don't know what the > > numbers were; the doctor would only tell me "the numbers were > > too low for lupus."
> Way too low isn't specific enough. We need numbers (then and now). > Can you not get copies of your lab tests? Highly recommended. I'll see if I can, but the test was in 1996. I don't know if the doctor keeps his records that long.
> I was tested for porphyria. (urine collection and bloodwork) I'm not > totally convinced that I don't have it. I got a look at the test results from the second set of tests I had. The lab included the range of figures that are typically diagnostic of porphyria, and my numbers were all well below that range; in the range people normally have. I was tested for all three photosensitive types of porphyria (variegate P., acute intermittent P. and congenital erythepoeic P. (sp?). Plus I didn't have the right symptoms--no huge blisters, no red-brown tooth discoloration, no consistently dark urine that turns purple under UV light.
Sometimes I wish the doctor who suggested porphyria had been right. It would have been bad, but at least I'd have known what was going on.
> If I follow the porphyria eating guidelines, I don't have gastro attacks. > Sounds to me that you might have lupus, with other side syndromes. > J - not a doctor I'm no doctor, either. Thanks for your time--I appreciate it.
--Bill Thompson
J - 08 May 2005 17:27 GMT > > http://www.niddk.nih.gov/health/hematol/pubs/itp/itp.htm Purpura > > Saw nosebleeds mentioned elsewhere for purpura. [quoted text clipped - 24 lines] > had about twenty precancerous lesions removed with a liquid nitrogen > spray. Hello Bill, What I meant about the brain is (getting scans to make sure) that there's nothing going wrong in the brain like : bleeding, aneurysms, tumors (apparently basal cell : Rarely, however, tumors develop on non-exposed areas.), that might be affecting your temperature control area, of the brain. Did you see a neurologist for the seizures? Have you had recent scans?
I'm trying to rule some things out: hope you understand. J
Note: I snipped but read the rest It might be helpful to a rheumy, if you can dig up those old records. I would think, if you're in the US, due to litigation issues, they might keep them even longer than here (Canada). I think here it's 7 years, but I could be wrong. On the other hand, they charge for the digging and photocopying. If they were all done at the same lab and ordered by the same doctor, I wonder if that's accessible to you (through asking the lab)? The reason I ask, is I had one doctor tell me (about my brother) that "shrug, ANA 1:1280 is nothing compared to patients in the tens of thousands range" whereas 1:1280 usually means "something's up, but what..." And he's right in one way, it's non-specific.
William R. Thompson - 09 May 2005 05:06 GMT > Hello Bill, > What I meant about the brain is (getting scans to make sure) that there's [quoted text clipped - 3 lines] > area, of the brain. Did you see a neurologist for the seizures? Have you had > recent scans?
> I'm trying to rule some things out: hope you understand. I understand, thanks. I haven't had any brain scans or X-rays. None of the doctors who looked at me suggested anything like that.
I only had the one seizure, and it happened after I took niacin. A doctor had suggested it to lower my cholesterol. He said that niacin caused problems for some people, although he wasn't specific. (Now that I think of it, my cholesterol has been lower since I started avoiding the sun.)
I'll have to see if my old ANA test results are still available.
--Bill Thompson
BJ - 09 May 2005 20:42 GMT Hi Bill, The only negative effect I have ever heard about niacin is sudden flushig of the skin. BJ-Sk. Canada
> > Hello Bill, > > What I meant about the brain is (getting scans to make sure) that there's [quoted text clipped - 18 lines] > > --Bill Thompson BJ - 09 May 2005 23:42 GMT Just read something else here Bill. This is in addition to the things J added, although I may have missed this in her post. It does say that niacin can cause hypotension. With that in mind, you could pass out if your blood pressure got too low. That could be confused with a seizure perhaps.
> Hi Bill, > The only negative effect I have ever heard about niacin is sudden flushig of [quoted text clipped - 27 lines] > > > > --Bill Thompson J - 09 May 2005 22:37 GMT > > Hello Bill, > > What I meant about the brain is (getting scans to make sure) that there's [quoted text clipped - 10 lines] > > I only had the one seizure, How do you know you had a seizure? vs some other type of event? like a mild stroke or stress or fell asleep or symptoms of low blood sugar or some type of event from too much carbon dioxide (I forget what's called) ? Did you cough? Hold your breath? Subconsciously stop breathing? What were the manifestations?
> and it happened after I took niacin. > A doctor had suggested it to lower my cholesterol. He said that > niacin caused problems for some people, although he wasn't specific. > (Now that I think of it, my cholesterol has been lower since I > started avoiding the sun.) Geez that's weird or it could be coincidental or see below.. Here's what I've gathered about niacin
http://www.nlm.nih.gov/medlineplus/ency/article/002409.htm Niacin (also known as vitamin B-3) is found in dairy products, poultry, fish, lean meats, nuts, and eggs. Legumes and enriched breads and cereals also supply some niacin. A deficiency of niacin causes pellagra. The symptoms include inflamed skin, digestive problems, and mental impairment.
Large doses of niacin can cause liver damage, peptic ulcers, and skin rashes. Even normal doses can be associated with skin flushing. It can be prescribed as a treatment for elevated total cholesterol and other types of lipid disorders, but it should only be used with medical supervision due to its potential for severe side effects.
I checked my porphyria book and there's nothing mentioned there for niacin nor nicotinic acid
I don't know who this person is and if she knows what she's talking about. http://www.findarticles.com/p/articles/mi_m0ISW/is_2003_June/ai_102372167 The correct balance and availability of adrenal hormones and also of eicosanoids control the flow of nutrients (including oxygen) into the cells. (3) Perhaps even more important, heme is needed for the production of red blood cells. (2) The consequent increase in the oxygen, and nutrient-carrying capacity of the blood, as well as the cell's renewed ability to receive the required nutrients, along with niacin's effect on the central nervous system and the parietal cells, fully restored the production of stomach acid in the 39 year-old patient.
Very high doses of niacin (3,000 mg or more daily) can cause liver damage, diabetes, an inflamed stomach, eye damage and elevated levels of uric acid which can cause gout. The inositol hexaniacinate form of niacin is not known to cause any side effects, but nutritionally knowledgeable doctors advise that neither form of niacin be taken in large amounts without a nutritionally-oriented doctor's counsel. (4)
In addition, high doses of niacin can cause an acute attack in someone with porphyria, simply because niacin stimulates the production of heme. (5) The latter is produced by the pophyrin enzymes. Mutations or defects in the eight precursors of porphyrin enzymes cause the various inherited or acquired errors of metabolism in porphyria patients. Because heme can be produced in every cell, anything that triggers the production of heme to a larger extent can initiate a highly damaging, and often extremely painful, free-radical chain reaction that affects many organs and systems throughout the porphyria patient's body. (2) Not only the patient, but also all of his or her physicians need to know what to avoid, it is sometimes difficult and it can be impossible to avoid a porphyria attack, but every effort must be made; an acute hepatic porphyria attack may cause paralysis or can even kill the patient. (6,7)
The body responds differently to the various mutations. Different porphyrias (or mutations that lead to the tendency for porphyrins to accumulate throughout the body) need different treatments. It is essential that patients who may have porphyria receive the proper testing and interpretation of the tests, as well as the correct treatment, in as timely a manner as possible. (7) For more information please contact the American Porphyria Foundation, P.O. Box 22712, Houston, Texas 77227 USA. Their website is www.enterprise.net/apf. The website password <HOUSTON> ensures ready access for physicians.
More food for thought (I can't copy it all here)- maybe print it up and discuss with your doctor? http://www.merck.com/mrkshared/mmanual/section2/chapter15/15c.jsp SECONDARY ELEVATIONS OF LDL
In North America and Europe, dietary cholesterol and saturated fats are the most common causes of mild to moderate elevations of LDL.
Hypercholesterolemia is common in biliary cirrhosis, as is a marked increase in the serum phospholipids and an elevated free cholesterol/cholesterol ester ratio (> 0.2). The plasma is not lactescent because the overabundant lipoproteins (lipoprotein X) are small and do not scatter light. Planar xanthomas (see Plate 15-2) and xanthelasma (see Plate 15-3) are common with prolonged and severe lipemia.
Hypercholesterolemia due to increased LDL levels may be associated with endocrinopathies (hypothyroidism, hypopituitarism, diabetes mellitus) and is usually reversed by hormone therapy. Hypoproteinemias as in the nephrotic syndrome, metabolic aberrations such as acute porphyria, or dietary excesses with cholesterol-rich foods may also produce elevated LDL levels. LDL levels rise at menopause and fall in response to estrogen replacement therapy. TC levels may be elevated secondary to increased HDL levels in postmenopausal women or in younger women taking oral contraceptives or hormone replacement therapy, which contains primarily estrogen.
Treatment of Elevated LDL
The major reason for therapy is to prevent premature development of atherosclerosis and to lessen the likelihood of CAD and MI. In addition, with lowered cholesterol, unsightly xanthomas will cease growing and regress or disappear.
In general, for mild or moderate elevations of LDL cholesterol, an altered diet is usually sufficient and is the initial step in treatment. Dietary changes usually should be tried for at least 6 mo before determining that a drug is also needed. For severe hypercholesterolemia (LDL > 220 mg/dL [> 5.70 mmol/L] or clinical evidence of CAD, peripheral vascular disease, or cerebrovascular disease), a drug should be added sooner. For familial hypercholesterolemia, drug therapy is almost always indicated, often in childhood. Depending on the lipoprotein excess present, familial combined hyperlipidemia responds well to weight reduction and restriction of saturated fat and cholesterol, followed when necessary by niacin 3 g/day, a statin (see below), or a combination of cholestyramine with niacin or gemfibrozil. Some patients with polygenic hypercholesterolemia are sensitive to dietary restriction of saturated fat and cholesterol. When this fails, therapy with a 3-hydroxy-3-methylglutaryl coenzyme A (HMG-CoA) reductase inhibitor (a statin), cholestyramine, or niacin will usually lower the elevated LDL to normal levels.
Niacin (nicotinic acid) may be useful for elevated LDL levels, but the high dosage required (2 to 9 g/day po in divided doses with meals) coupled with its side effects (eg, gastric irritability, hyperuricemia, hyperglycemia, flushing, and pruritus) often restricts its use. Niacin is most effective when combined with cholestyramine in the severe heterozygote with familial hypercholesterolemia.
Thyroid analogs like D-thyroxine effectively lower LDL levels but are contraindicated in patients with suspected or proven heart disease.[]
So it seems to be saying that it's only effective in high doses and both Medline and Merck say that high doses can cause problems. Not sure where I'm going with this, but since the above mentions hormones, you might want to look at Lupus in men (I'll see if I can find and post it - it might be in the FAQ or Andy might have it handy).. I beleive it also mentions hormones; many of the women here also relate problems with hormone fluctuations. J
William R. Thompson - 10 May 2005 07:19 GMT
> > I only had the one seizure,
> How do you know you had a seizure? vs some other type of event? > like a mild stroke or stress or fell asleep or symptoms of low blood sugar or some > type of event from too much carbon dioxide (I forget what's called) ? Did you cough? > Hold your breath? Subconsciously stop breathing? > What were the manifestations? About a half-hour after I took the niacin I started having cramps and diarrhea. I resigned myself to having three days of this, er, usual experience. Then I started to feel shaky, which was new, so I lay down. I started shaking harder and harder, along with this intense waves-of-heat sensation. I couldn't control any of my muscles, including bladder and bowels (well, it was time to do the laundry anyway, and thanks to the recent trip to the bathroom the mess wasn't that bad). This went on for maybe fifteen minutes before it eased off. I don't think I had any trouble breathing. Maybe it wasn't a seizure by medical standards, but it was close enough for me.
The doctor had warned me that some people had trouble with niacin, so I assumed that this was one of the things he had in mind. He didn't act like it was a big deal when I mentioned it at the next visit.
(more snippage)
> Here's what I've gathered about niacin
> Large doses of niacin can cause liver damage, peptic ulcers, and skin rashes. Even > normal doses can be associated with skin flushing. It can be prescribed as a treatment > for elevated total cholesterol and other types of lipid disorders, but it should only > be used with medical supervision due to its potential for severe side effects. Thanks for the impressive amount of research you did. The doctor who ruled out porphyria in my case was a specialist in the condition, so it's unlikely that I'm dealing with that. But the mention of niacin and lipid disorders makes me wonder what niacin would do to antiphospholipid syndrome.
--Bill Thompson
J - 10 May 2005 12:19 GMT > > What were the manifestations? > [quoted text clipped - 10 lines] > a seizure by medical standards, but it was close enough for me. > more snippage) Well, it looks to me that you had an unusual and prolonged reaction to niacin. Perhaps it's because of the known side effects/higer dose? combined with your "condition". (which may or may not be Lupus) Symptoms and signs of niacin deficiency, pellagra http://www.medterms.com/script/main/art.asp?articlekey=4821 * Diarrhea; * Dermatitis: A scaly rash on skin exposed to light or trauma; * Dementia: Mental disorientation, delusions and depression; and * Death.
The diet to prevent it is http://www.medicinenet.com/niacin/article.htm Niacin is available in slow-release forms (Niaspan, Slo-Niacin). Natural sources of niacin include meat, poultry, liver, fish, nuts, green vegetables, whole grain and potatoes."
Think carefully about this one, Bill. Do you follow that type of diet, on a regular basis? I pretty well do, but don't eat fish and nuts. But I hope that the whole grains make up for that. I don't eat roast, but do eat red meat 2-3 times a week. The whole grain that I eat, is called 7-grain bread and better quality cereals. Some breads have nothing much of use in them. Ditto for cereals, even (some) bran cereals has too much sugar in it.
> > Here's what I've gathered about niacin > [quoted text clipped - 7 lines] > specialist in the condition, so it's unlikely that I'm > dealing with that. Mine wasn't but he was a hematologist who claimed to know about it. So we've ruled out porphyria for you.
> But the mention of niacin and lipid > disorders makes me wonder what niacin would do to > antiphospholipid syndrome. We have not ruled out APS (above) - Hughes' syndrome We have not ruled out Lupus (for now, based on similarities to John and several posters here, I'm ruling you in) We have not ruled out Raynaud's We have not ruled out B12 and Schilling's We have not ruled out diet. Once you consider what I've said above about diet, do you feel you have been (over the years) and are now getting an adequate and balanced diet? If yes, let's look at malabsorption syndromes and B12. http://www.postgradmed.com/issues/2001/07_01/dharmarajan.htm http://www.nlm.nih.gov/medlineplus/ency/article/000574.htm
PS If I were you, I'd toss out all those other links (that I provided previously) except for the diagnosis part of the Lupus FAQ
Check for APS Check for B12 and schilling
Ask your doctor to have a look at this and see what's been ruled out for conditions or deficiencies http://www.healthatoz.com/healthatoz/Atoz/ency/malabsorption_syndrome.jsp
I've ruled out for you: Intestinal surgery Use of certain drugs, such as mineral oil or other laxatives Excess alcohol consumption. Intestinal surgery
I haven't ruled out others there Travel /parasites/infection Whipple's disease Family history of cystic fibrosis How's you drinking water there? Have you had it checked? I have a report that water from northern US is full of raw sewage and Utah's on the list. I'll have to post separately.
Some of the dietary deficiencies say "may" be low. Which in my view, indicates might show up in a low range, but not definition. Also note that it says that cholesterol may be low. So in theory, if you have a malabsorption problem combined with high cholesterol, your cholesterol levels might actually be higher than they currently show up on tests. Speaking of cholesterol, there's 2 types: one is familial and the other is diet related. If you've been following the FDA food pyramid which includes the above diet, then you may have the familial type of high cholesterol, which requires medication. (or that's my understanding from my friend - she did not respond to dietary changes, her husband did). It's also on the internet, but I don't have the link at the moment.
I would feel better if you had most of the diagnostic tests there (perhaps not MRI). I've had most of them over the past 6 years, including the 72-hour fecal fat abosption. If I recall correctly, something pancreatic enzymes were checked for me, but I'm not sure. Another is diabetes..I was told no some years ago and now they're saying "yes".
Finally, I want to discuss the temperature drops:Seems to me that it would be expected that if you're exposed to heat/sun, that coming in from that environment (like Utah) could result in your body's temperature mechanism trying to make a sudden adjustment; so I wouldn't worry too much about listing that ; except to confirm in your mind, that someone else here with Lupus experiences same. Same for your nose bleeds.
I just want to make sure nothing gastro related is happening..and it has also happened to other posters here. For instance, Grace has something cystic-fibrosis like happening to her (lungs). Wes, pancreatitis - had to have numerous tests and still does not have a Lupus diagnosis.
So it seems to me, if we clear all those above, we're left with Lupus, Raynaud's, B12/Schilling's and APS and high cholesterol. Which is right back where we started. <g> Get tested for B12 /schilling's as BJ suggested, APS and after that if treatment is required, we'll talk. Injections for B12. No idea about APS because you already have bleeding problems. I"ve never done the schillings that those 3 tests should be simple enough to do but the test seems to look for similar as the malabsorption one does, so skip the bloodwork for malabsorption and go with Schilling's ..but do have some gastro tests and scans, just to make sure nothing more serious isn't happening there.
At that point, (no B12 deficiency or deficiency and properly treated), nothing on gastro tests, then off you go to a rheumy, IMO Stay out of the sun in the meantime. J
J - 10 May 2005 12:22 GMT > Ask your doctor to have a look at this and see what's been ruled out for conditions or > deficiencies [quoted text clipped - 12 lines] > How's you drinking water there? Have you had it checked? I have a report that water from > northern US is full of raw sewage and Utah's on the list. I'll have to post separately. http://groups-beta.google.com/group/soc.retirement/msg/4fd25398aacf4e6c The full article and worst locations are mentioned here. J
J - 10 May 2005 12:42 GMT > > Ask your doctor to have a look at this and see what's been ruled out for conditions or > > deficiencies [quoted text clipped - 16 lines] > The full article and worst locations are mentioned here. > J I think ignore this - I think it's saying that Utah's water is good. J
William R. Thompson - 11 May 2005 10:31 GMT (lot of snipping, but nothing ignored--thanks again for your time and effort)
> Well, it looks to me that you had an unusual and prolonged reaction to niacin. > Perhaps it's because of the known side effects/higher dose? combined with your "condition". Possibly. The dose I took wasn't all that high--125 mg., about five times the recommended daily requirement. I've had trouble with other vitamins when I've taken more than the daily requirement, but normally it's just an upset stomach. I do take vitamins, and I'm careful now not to OD on them.
> Once you consider what I've said above about diet, do you feel you have been (over the > years) and are now getting an adequate and balanced diet? My diet is fine, I think. There's always good stuff from the four known food groups, and I don't do much in the way of junk food.
I spent several years thinking the problem was food allergies. That included a set of allergy scratch tests, which came back negative except for some mild grass allergies. I persuaded one doctor to test for celiac disease (the symptoms were similar, and a cousin had been diagnosed with it [misdiagnosed, it turns out], and that test came back negative. The doctor checked a few other things at the time, for parasites and infections, and found nothing.
I tried eliminating various items from my diet (dairy, corn, egg--name it) with no good results. The long and the short of it is, alcohol aside, I couldn't connect my diet to the problem.
> I haven't ruled out others there > Travel /parasites/infection > Whipple's disease > Family history of cystic fibrosis > How's you drinking water there? Have you had it checked? The local water supply was checked a few years ago, when there were concerns about waste leakage from the two local military bases. The water supply is okay.
> Another is diabetes..I was told no some years ago and now they're saying "yes". One of my brothers developed juvenile diabetes when he was ten, so I keep an eye out for that problem. I've been fine so far.
> Finally, I want to discuss the temperature drops:Seems to me that it would be expected that > if you're exposed to heat/sun, that coming in from that environment (like Utah) could result > in your body's temperature mechanism trying to make a sudden adjustment; so I wouldn't worry > too much about listing that; except to confirm in your mind, that someone else here with > Lupus experiences same. Same for your nose bleeds. I've had the temperature drops after spending too much time on-line, as well as after having had a drink or using something with aspirin in it. Fluorescent lights, including street lamps, will do it to me as well. I've been out on both very hot and very cold nights, and not had any trouble with my body temperature afterward.
> So it seems to me, if we clear all those above, we're left with Lupus, Raynaud's, > B12/Schilling's and APS and high cholesterol. Which is right back where we started. <g> Running laps never did me any harm.
> At that point, (no B12 deficiency or deficiency and properly treated), nothing on gastro > tests, then off you go to a rheumy, IMO > Stay out of the sun in the meantime. I will; thanks again.
--Bill Thompson
J - 13 May 2005 12:05 GMT > (lot of snipping) > > So it seems to me, if we clear all those above, we're left with Lupus, Raynaud's, [quoted text clipped - 7 lines] > > I will; thanks again. Hi Bill, You even covered (ruled out) things that I forgot - celiac. Welcome to alt.support.lupus
Hope to hear from you often. We care. J
William R. Thompson - 14 May 2005 08:07 GMT > Hi Bill, > You even covered (ruled out) things that I forgot - celiac. > Welcome to alt.support.lupus
> Hope to hear from you often. > We care. Thank you!
--Bill Thompson
William R. Thompson - 14 May 2005 10:40 GMT > Here's what I've gathered about niacin
> http://www.nlm.nih.gov/medlineplus/ency/article/002409.htm > Niacin (also known as vitamin B-3) is found in dairy products, poultry, fish, lean > meats, nuts, and eggs. Legumes and enriched breads and cereals also supply some > niacin. > A deficiency of niacin causes pellagra. The symptoms include inflamed skin, digestive > problems, and mental impairment. I did some more checking on pellagra, including some historical websites and a few old books on my shelves. (My hunch is that the modern texts are written by people who've never seen a case of it.)
The dermatitis in pellagra can be mild, but in severe cases it can be gross enough to be mistaken for leprosy. The mouth sores usually include the tongue; there's redness and swelling of the tongue, plus sore areas. One interesting point from an old Merck Manual is that "sunlight can cause butterfly-shaped lesions on the face" (although the term "malar rash" isn't used here, or in the section on lupus).
If you don't have Schillings' syndrome, you have to go out of your way to develop pellagra. A century ago it was common in the American South. A public health official from Washington, Dr. Joseph Goldberger, was sent from Washington to investigate the problem in 1915. He found the connection with the diet (poor Southern farmers seemed to live exclusively on corn, sorghum and pork fat). After that it only took twenty-odd years to convince the medical community that pellagra was caused by diet and not by infection. A fascinating story.
Apparently it takes five or six months of niacin deprivation to develop pellagra.
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From the 1950 Merck Manual (8th edition): "The complete syndrome of advanced niacinamide deficiency (pellagra), with scarlet stomatitis and glossitis, diarrhea, dermatitis and mental aberrations, is well known [!]. The several symptoms of deficiency may, however, appear alone or in various combinations.
"There are four general types of cutaneous lesions:
"1: The first and most acute consists of erythema followed by vesiculation, bullae, crusting and desquamation. Secondary infection is common and usually results from exposure to sunlight (actinic trauma).
"2: The second type, also acute, is intertrigo, characterized by redness, maceration, abrasion and secondary infection in the characteristic intertriginous areas.
"3: The third is chronic hypertrophy: the skin becomes thickened, inelastic, fissured, and deeply pigmented over pressure points. There is often secondary infection. When healing starts the lesions often shows a sharply defined perly border of regenerating epithelium.
"4: The fourth type consists of chroinic ichthyotic lesions, with dry, scaly, atrophic, inelastic skin, too large for the part it covers. This usually is seen only in older pellagrins. Distribution of the lesions is more characteristic than their form. They occur at trauma points; sunlight causes butterfly- shaped lesions on the face and affects other exposed parts. The cutaneous lesions are most frequently symmetrical but unilateral lesions are sometimes seen.
"Changes in the mucous mebranes involve chiefly the mouth--sometimes also the vagina, urethra and conjunctiva. Scarlet glossitis and stomata are characteristic of acute niacinamide deficiency. The tip and lateral margins of the tongue and the buccal nucosa around Stenson's ducts are first affected. As the lesion progresses, the entire tongue and oral mucous membranes become a bright scarlet color. Soreness of the mouth, increased salivation, and edema of the tongue are present. Ulcerations may appear anywhere, but are especially common on the undersurface of the tongue, the mucosa of the lower lip, and opposite the molar teeth. They often are covered by a grayish slough containing Vincent's organisms.
"Gastrointestinal symptoms are indeterminate in early cases: there may be burning of the mouth, pharynx and esophagus, and abdominal discomfort and distension; later, nausea, vomiting and diarrhea. Diarrhea is the classic gastrointestinal symptom and is of serious import. It often is bloody because of the gastrointestinal hyperemia and ulceration.
"Three types of CNS involvement are observed.
"1: The first and most frequent is a neurasthenic syndrome indistinguishable from that of thiamine deficiency.
"2: The second is organic psychosis, usually characterized by memory impairment, disorientation, confusion, and confabulation. In some patients, excitement, depression, mania, and delirium predominate; in others the reaction is paranoid.
"3: The third type is the "encephalopathic syndrome." The clinical picture of encephalopathy due to niacinamide deficiency is fairly well defined and is characterized by clouding of consciousness, cogwheel rigidities of the extremities, and uncontrollable sucking and grasping reflexes. This syndrome is most common after a period of delirium or high fever, or postoperative following a series of dextrose infusions without preventive vitamin therapy. The peripheral neuropathy and signs of spinal tract involvement noted probably result from a simultaneous thiamine deficiency. There is no characteristic or diagnostic laboratory finding [in 1950]."
From the 1963 Encyclopedia Britannica: "If dermatitis is present it begins as an erythema resembling sunburn that becomes reddish-brown, rough and scaly. Lesions may appear on any portion of the body, but the commonest sites are the hands, wrists, elbows, under the breasts, knees, feet and perineal regions. A sharp line of demarcation separates the lesion from the healthy skin. Glossitis and stomatitis are present. The tongue becomes red and thickened and the mucuous membrane becomes reddened. Severe watery diarrhea often is present in the acute stages. Nervousness, insomnia, headache and dizziness may be present, and pellagrins are subject to periods of depression and apprehension. Unless early and adequate treatment is administered, confusion, hallucinations and complete disorientation as to time, place and person develop."
--Bill Thompson
J - 16 May 2005 07:45 GMT > > Here's what I've gathered about niacin > [quoted text clipped - 33 lines] > Apparently it takes five or six months of niacin > deprivation to develop pellagra. [...] Thanks Bill, In Canada, we have food and pharmaceutical labelling laws. I just checked the bread I eat and 30% of its nutritive value is Niacin. So unless a person is eating "garbage" type bread, it's probably in your breads also. So yes, unless a person has a malabsorption problem, I expect we all get enough. J
J - 27 May 2005 12:14 GMT > Hello, everyone. > [quoted text clipped - 8 lines] > spent too much time under flourescent lighting or in front of > a CRT, or had any alcohol. Hi Bill, I was relooking at your first post. I think the spots on your skin are called petechiae Some differentials are here http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm
I have to ask you (perhaps again, I forget).
Have you seen a gastroenterologist for a colonoscopy? The worry would be cancer.
Another cancer worry with the petechiae, would be some form of leukemia. (see above Medline list)
or was this one discussed with the rheumy? http://www.nlm.nih.gov/medlineplus/ency/article/000425.htm Does it seem to fit? J
William R. Thompson - 28 May 2005 07:48 GMT > Hi Bill, I was relooking at your first post. > I think the spots on your skin are called petechiae > Some differentials are here > http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm
> I have to ask you (perhaps again, I forget).
> Have you seen a gastroenterologist for a colonoscopy? > The worry would be cancer. That's one of the things the doctor checked for at the visit. So far I seem to be cancer-free, knock wood (he says as he raps the side of his head with his knuckles).
> Another cancer worry with the petechiae, would be some form of leukemia. > (see above Medline list)
> or was this one discussed with the rheumy? > http://www.nlm.nih.gov/medlineplus/ency/article/000425.htm > Does it seem to fit? That one doesn't seem to fit; I don't get those huge spots, or some of the other symptoms.
--Bill Thompson
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