 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Lupus / February 2009Newbie with questions
Hello, My name is Cristina. I went to the doctor and neurologist. This has been an ongoing problem for about a year or two, more severe since about November. I have horrible aches and pains, especially my hips, knees and shoulders. I get this muscle spams all over. I tested postive ANA and the MRI showed nothing. My mother has MS, so that's one of the first things I asked them to check out. I also get nasty headaches, pins and needles feeling in hands and feet. And just have a general achy feeling in my whole body like I'm coming down with the flu. And I can't seem to get enough sleep. Still waiting to get the second set of blood tests scheduled, mostly likely to happen next week. So, what if any advice can someone give? I know I still have to wait for blood tests, but just looking to see what kind of changes I need to make if the diagnosis is Lupus. Thank you. In message <31aca3cb-d809-46a7-8ad3-cf2bdc3d732e@p13g2000yqc.googlegroups.com>, >Hello, >My name is Cristina. I went to the doctor and neurologist. This has [quoted text clipped - 13 lines] >for blood tests, but just looking to see what kind of changes I need >to make if the diagnosis is Lupus. http://www.lupusuk.org.uk/soitslupus.asp (and the rest of the site, and of http://www.northeastlupus.org.uk )  SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> > In message > <31aca3cb-d809-46a7-8ad3-cf2bdc3d7...@p13g2000yqc.googlegroups.com>, [quoted text clipped - 26 lines] > > - Show quoted text - Thank you for sending these sites. They are among the ones I've looked at before. I guess what I'm really looking for is personal stories. Looking to hear from people about how they dealt with it at the beginning. In message <c4d488f6-4e2d-4314-940a-625d78a0fc00@k19g2000yqg.googlegroups.com>, cristinasupes79new@gmail.com wrote [] >Thank you for sending these sites. They are among the ones I've looked >at before. I guess what I'm really looking for is personal stories. >Looking to hear from people about how they dealt with it at the >beginning. I'm told there's a lot of these on the 'net, although I don't have any URLs myself. Most of the tales I hear say that actually getting diagnosed is the worst bit! Be wary of stories that say that Lupus is instantly cured by eating this, or not eating that, or taking some wondermedicine. SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> > In message > <c4d488f6-4e2d-4314-940a-625d78a0f...@k19g2000yqg.googlegroups.com>, [quoted text clipped - 15 lines] > Andy Taylor [Chair, N E Lupus Group]. > <URL:http://www.northeastlupus.org.uk> OH for sure. I am really just interested in hearing the emotional side. I'm a pretty strong person and have been through a lot. But this illness is one that you can't "see" and people around me, while sympathic just have no idea. I guess I just want to talk to someone who has been through the initial stages and understands. It's frustrating to wait for all the tests. Welcome to the group Cristina. I guess you could say that all of our stories are very similar as far as dealing with the uncertainty of diagnosis, waiting for diagnosis, and dealing with the lack of knowledge and concern by those in our lives that can't see and don't understand our illness. I have been fortunate to have the support, understanding and even the over protectivness of both my family and my friends. They have watched me cry myself to sleep because of the pain and watched me get up after little sleep and go to work, keep my house and be active in my childs life because I had to and because I wanted and needed to. We have all adjusted now to my not working, my husband doing all of the shopping and running around that needs to be done and my not so very active life. We each do what we need to do for ourselves, our families, and our homes and we each learn when it is time for us to adjust our life to what is best for our health. I would suggest that you get and read The Lupus Book by Dr Daniel Wallace. I prefer the 2nd edition but the 3rd is good also. Get a notebook or diary and record your symptoms as they happen and record what you did, even what you ate, time in the sun etc before they happened. Read all you can and be aware of your own body and its reactions. Then it is just one day at a time and working with a doctor to find what helps you. I am 58 was diagnoised with Lupus and fibromyalgia as an older adult but my medical history would put its beginnings in my youth. Pain has been a constant for so many years that if I had a pain free day I would not know how to act. We have all been where you are on this road and some of us still are. All I can say is it is a one day at a time and making sure you educate yourself (and share the knowledge with your family and friends) and keep a diary of what is happening. Hugs, Sherry > Hello, > My name is Cristina. I went to the doctor and neurologist. This has [quoted text clipped - 15 lines] > > Thank you. Hi Cristina; My story is similar to Sherry's and probably most of the other women in this group.... the diagnosis is difficult to achieve and once gotten, difficult to live with and personally, I have found that it can be better dealt with on a daily basis without it becoming overwhelming with all of it's complicated facets! I have just purchased Dr. Wallace's 4th edition of the Lupus Book and I have found it to be very 'real' and written in layman's terms so very easy to get through ... also goes into the pain and fatigue that accompanies lupus. I am going to be 57 this year and feel every day of it... I've had lupus since I was about 12 years old but not treated for it till 28; and that is the way of this illness.... you need symptoms present at the exam, lab results positive and a history to back it all up along with a good doctor who speaks the language of lupus.... preferably a rheumatologist. Good luck with your appointments and keep us updated if for no other reason than to vent and perhaps to get feedback from the members here should you have any issues with your doctor or specialist or understanding the treatments and/or meds you may be given should you be dx'd. hugs, Shelagh Lupus Info @ http://members.shaw.ca/systemiclupus > Welcome to the group Cristina. I guess you could say that all of our > stories are very similar as far as dealing with the uncertainty of [quoted text clipped - 54 lines] >> >> Thank you. Thank you Sherry and Shelagh. I really appreciate the kind words! I am a few months shy of my 30th bday. And I just got laid off from my job. So life right now is not great in general. My boyfriend is supportive and my friends too. But it's just nice to hear from people that actually KNOW what I am going through. The itchiness and the pain and wanting to sleep all the time. I ran my most recent 5K, just this past September and while I've always had body aches since I was a kid,...since November on and off I've been a slug! I've been a slug since mid January continuously. Pushing myself just to get through the basics. But also things are starting to fall in to place. Like why do I get muscle twitches and feverish aches but not have a cold or flu. Why do I get a really warm feeling in my hands and feet and yet they are the first to turn ice cold when I go outside. My nose itches so bad sometimes I want to rip it off and I keep getting hives on my face, my cheeks so red, I don't need blush :) I'm staying positive, but I appreciate the support as well and will purchase that book! Just keep thinking positively because I know for a fact that a 'good attitude' plays a huge role in keeping you 'weller' than if you are negative and depressed and feeling blue or down.... try to keep your spirits up! OH, and a good sense of humor is a must with lupus LOL... everyone here knows that what with all the cr*p you will go through and probably already have gone through!.... laughing is also a good sleep aid and a pain reliever... sounds corny I know, but true anyhow! You are so young Cristina, younger than both my kids (and I have a grandson now almost 2 already!)... try to enjoy your days, one at a time, getting as much as you can from each and doing what you can without over extending and not thinking too far ahead; also read some books on lupus and be prepared for what may be coming, that helps too ... otherwise? you are on your own with whatever coping methods you have learned the previous 30 years <g>.... hopefully lots (!?) It is such an individual illness and no 2 people have the same symptoms nor does it run the same course in any given 2 people... so you really are on your own with lupus. BUT, having said that, this group is here for just that reason, as are the websites we have built, both for the newly dx'd and the people wondering what the heck they have gotten into with all the symptoms they have and the medications they are being told to take daily! ... the fluey aches and pains are all a part of flares for most of us and really the least of it... along with low grade fevers out of the blue and the skin rashes that are so 'attractive'! **NOT..LOL ;^P So again I wish you, Cristina and Carol both, good luck and 'chins up girls'.... I have full confidence that you'll handle this like any other challenge you've met! hugs from me, Shelagh Lupus - Invisible In Plain Sight @ http://members.shaw.ca/systemiclupus Like Sherry, I, from sheer habit, check the posts most days so I will be looking for updates and hoping that you are both doing great, no matter what the docs say! > Thank you Sherry and Shelagh. > I really appreciate the kind words! I am a few months shy of my 30th [quoted text clipped - 14 lines] > I'm staying positive, but I appreciate the support as well and will > purchase that book! Cristina, allow me to welcome you also. Before I forget, I would like to ask where you live? My lupus experience is similar to those of Shelagh & Sherry, except I am a 70 year old man. If you think it is tough for ladies to get a diagnosis, think what it is like for a man up in his years. No telling how long I've had lupus because I was sick for years before finding a female health care provider that was knowledgeable and objective enough to do the right tests. That was 15 years ago. I totally agree with their advice to find a Rheumy doctor. Not that it is possible for me (or anyone?) to diagnose your illness as lupus from your description of the symptoms it sounds like the stuff we have experienced that has been addressed by a rheumatologist. At least they will know where to go next. I am glad you have shared your story and look forward to hearing how it turns out. Will you please keep us posted? George > Hi Cristina; > My story is similar to Sherry's and probably most of the other women in [quoted text clipped - 78 lines] >>> >>> Thank you. Thank you again to everyone and good luck to you Carol. Someone mentioned hair loss - yup got that problem too. Really creepy waking up at seeing a pile on the pillow. My boyfriend and I joke about it now cuz we find my hair all over the house and couldn't figure out why!! I live in Mount Vernon, NY, USA. I noticed this group seems to be UK based, I chose it because it was the first group on the list that actually appeared to be talking about Lupus instead of something not :) I have visited the UK before. My mother's side comes from Ireland, I don't know about my father's side. Never met him. My mother chose my stepfather over me, (as in was made to choose by him) haven't seen her in almost 10 years. So I've had a rough bit of it already. I'm tough but have a good sense of humor. Hi Cristina, The reason I inquired about your whereabouts is because most of the symptoms you described can be caused by "valley fever" or fungal infections. However, it is my understanding that this condition is most often found here in the desert regions of the SW USA. Getting a diagnosis of lupus doesn't rule out being afflicted by other diseases also. That has been my experience and that of many others I have heard from. Whatever the cause, let us hope you get some relief soon! George > Thank you again to everyone and good luck to you Carol. > [quoted text clipped - 13 lines] > had a rough bit of it already. I'm tough but have a good sense of > humor. <cristinasupes wrote > Thank you again to everyone and good luck to you Carol. Thanks! Results of tests on Tuesday. I see one of the others says the 15 year marker is no longer at all valid but thats the one I was seeing on the AMA web pages etc. Perhaps they are outdated? Thats good to hear if so! > Someone mentioned hair loss - yup got that problem too. Really creepy > waking up at seeing a pile on the pillow. My boyfriend and I joke > about it now cuz we find my hair all over the house and couldn't > figure out why!! It's one of several possibles. Apparently it's rare to have 2 lupus patients with nearly identical symptoms. Here's another odd one I have and it may mean it's something else, or i also have something else. I get these tiny bumps that fill with a tiny clear fluid filled head on mostly my hands (fingers, even palms). Until that bump is broken, they itch like the dickens. Now that I think of it, they remind me a little of like Charlotte when she had scarlett fever (terrified when they told me that one but apparently pretty common and with treatment, not at all hard to handle but the skin peels off the feet and hands and the poisons leach out). These arent colorful like that nor are they prolific (nor do I peel) but they remind me a little of it somehow. Had one a few days ago in the palm but they only happen every 3 weeks or so, normally just one of them. Arms may have them a bit more often in summer. > I live in Mount Vernon, NY, USA. I noticed this group seems to be UK > based, I chose it because it was the first group on the list that > actually appeared to be talking about Lupus instead of something > not :) I have visited the UK before. It's ok, they don't mind us ;-) I live in Virginia Beach, VA (USA). Thats Norfolk area if not familiar with it. If your city is anyplace close to Windsor NY, I may be in your area again this next year and was last year for a group of cooking folks. > My mother's side comes from Ireland, I don't know about my father's > side. Never met him. My mother chose my stepfather over me, (as in was > made to choose by him) haven't seen her in almost 10 years. So I've > had a rough bit of it already. I'm tough but have a good sense of > humor. Hehehe Humor is the most needed part. I don't know my Dad's side either as they got divorced when I was 2. Met him a few times, seemed a nice enough fellow. Gone now but he was 40 when I was born and died in 2001 (age 81). Mom raised us 3 kids and did a rather good job of it ;-) Today I was copying my medical records (one of those things us military have to do before retirement as you need several copies). Suprisingly I have had a few of the same blood tests the Doc made in the past, presumably for other reasons. He'll be able to compare the results with me in my 20's on a few of them to see if there were changes. Granted some things change with age, but some things don't really so a major shift may mean something even if it's lower than the normal 'diagnosis level'. Example of that: My blood pressure is now listed as 'pre-hypertensive' but they are reviewing that as I may be true hypertensive. Why? My levels for my age are the highest end that is still 'normal' but my records show a clear track that I was always *well* under normal until about 2003 when it starts to shift up. With that long record they have on me, they are looking again. Much snipping......... > <cristinasupes wrote > It's one of several possibles. Apparently it's rare to have 2 lupus > patients with nearly identical symptoms. Here's another odd one I have and [quoted text clipped - 10 lines] > they only happen every 3 weeks or so, normally just one of them. Arms may > have them a bit more often in summer. I am curious about the little blister things you experience. Do they really burn and sting when opened? Also, do they ever appear in groups or patches? George I'm definitely not concerned about longevity. I've always lived life to the fullest. My concern is how this will change my lifestyle. How my life has already been changed the past year or so. I always had the capacity to go go go. Working 2 jobs, going to school at the same time. And now it's like I don't have much energy. And now, I don't think I used it all up. lol <cristinasupes79new@gmail.com> wrote in message <quote> My concern is how this will change my lifestyle. How my life has > already been changed the past year or so.</quote> Yes I get what you mean and your life may change somewhat at first; but as you get onto the right meds and get all your symptoms treated appropriately for you, you will begin to feel more like the 'old you' , more like you did in the past years when you were well.... I raised 2 kids, adopted them as babies and did all the mommy things you can imagine and more! and had a great time with them... now of course, they are adults and living independently and I am a nana to an almost 2 year old grandson... and I still consider that I have a quality filled life... but it is all in how you look at it... look around and see others worse off than you and realize just how good you do have it... one rheumatologist that I had in the beginning stages of treatment etc., asked that his patients all read a book called 'Man's Search For Meaning' -- by Victor E. Frankl -- and it was one of the best books I could have read at that time of my life!... It made me really take stock of what I had and what others have been through and don't have ... He was a smart doctor who was tired of his patients whining over small matters that could be treated.... and he was probably the best diagnostician I have ever come across in all my years in the medical profession... he stands out still; he could look at me and without lab results yet returned etc.. he could tell me what was going on and treat me and when the results did come in, he was right on and I was ahead of the game being treated earlier than I would have been without him and it was the same way every time.. I'd meet him at the ER and really sick with fever and all and he'd do his magic and I'd walk out a couple of days later on the mend... he had a gift and so I trusted him and his ideas and so I read that book and to this day am glad I did... it changes your outlook on life and what is and is not important, in a good way!! hugs, Shelagh http://members.shaw.ca/systemiclupus Absolutely, it's totally how you look at life. I think just right now what with this potential Lupus situation AND being laid off from my job three weeks ago, my whole life was turned upside down. I know it will right itself in a few weeks...but oh the waiting!!! I need to learn patience :) C On Feb 18, 4:04 am, cristinasupes79...@gmail.com wrote: > Absolutely, it's totally how you look at life. I think just right now > what with this potential Lupus situation AND being laid off from my [quoted text clipped - 3 lines] > > C Thank you for starting a discussion that delves into the problems of living with lupus. After a year of no problems Lupus symtoms broke out during last weekend. Yesterdays visit with doctor resulted in having to take 4 times as much prednisone as I have been taking for last 5 years. Have you thought that the problem of losing your job might have pushed the Lupus into action? The slowdown in our business and trying to deal with a lot of extra expenses and having to cut down on employees hours has stressed me out. Wish there was some way to send you stressless days so you could bounce back faster.... hugs ruth I am almost positive my job started the Flare of Lupus - again assuming that all the signs are pointing to it. For a good three months before I got laid off things were really bad at the company, they lowerd our salaries, then started laying off one by one. Lowered salaries meant is was harder for me to pay bills. More stress :) So the paperwork from the Neuro finally got to my doctor's office (he was out on medical leave, another doc was subbing) so I found out my ANA number. It is 1.3 something. Any thoughts guys? I know that is a high result and positive ANA test but don't know really what else that means. Thanks!!! Cristina Hi Ruthie, Yes, we need to be reminded every now and then that stress is not your friend and especially with Lupus it seems to trigger flare ups. With the economy here in the states and around the world it is going to be hard for many of us to avoid the stress in our life. Sorry to hear that you have flared and have had to up your meds. Hang in there. Hugs, Sherry On Feb 18, 4:04 am, cristinasupes79...@gmail.com wrote: > Absolutely, it's totally how you look at life. I think just right now > what with this potential Lupus situation AND being laid off from my [quoted text clipped - 3 lines] > > C Thank you for starting a discussion that delves into the problems of living with lupus. After a year of no problems Lupus symtoms broke out during last weekend. Yesterdays visit with doctor resulted in having to take 4 times as much prednisone as I have been taking for last 5 years. Have you thought that the problem of losing your job might have pushed the Lupus into action? The slowdown in our business and trying to deal with a lot of extra expenses and having to cut down on employees hours has stressed me out. Wish there was some way to send you stressless days so you could bounce back faster.... hugs ruth George, I get little blistery things (like a rash) if I spend any length of time in the sun. Have reacted that way since I was a child...It just took me a long time to come to the realization that the sun is not my friend. Sherry > Much snipping......... > [quoted text clipped - 20 lines] > > George Hi Sherry, The little blisters I refer to are usually grouped together in areas like the back of my left shoulder and on one ankle. Neither spot is exposed to sunshine. When the little blister top is scratched off it burns like fire and stings. "Why scratch it then?" You ask. Because they itch! Have you ever experienced this? Direct sunshine immediately stings me like jillions of little needles and if I don't cover up then I really pay. However, like most of my lupus stuff this varies from time to time. It's like it cycles. I don't understand.. Thanks for the response. George > George, > I get little blistery things (like a rash) if I spend any length of time [quoted text clipped - 28 lines] >> >> George No, I have not experienced that. I agree, if it itches I usually scratch it. I wonder if the lab could take the fluid out of one of those blisters and put it under a microscope or other test and discover what it is? Sherry > The little blisters I refer to are usually grouped together in areas like > the back of my left shoulder and on one ankle. Neither spot is Hands for me, irritating whern in the palm. Normally come in singles but may have more than one. They dont burn or sting, just itch til the top is off. In message <7800eb5e-8121-4784-a14c-8c4bcba62f5b@f3g2000yqf.googlegroups.com>, >Thank you again to everyone and good luck to you Carol. > [quoted text clipped - 5 lines] >I live in Mount Vernon, NY, USA. I noticed this group seems to be UK >based, No, it's just that we shout louder ;) SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> <cristinasupes wrote > My name is Cristina. I went to the doctor and neurologist. This has > been an ongoing problem for about a year or two, more severe since > about November. Hi Cristina. I am like you, still being diagnosed. > I have horrible aches and pains, especially my hips, knees and > shoulders. I get this muscle spams all over. I tested postive ANA and > the MRI showed nothing. My MRI shows 3 herniated discs with 2 more nominal, pain in right shoulder, all down right arm (likely related to degenerated connective tissue in back), and numbness or pain or tingling in both hands (again, back may be cause). Degeneration of right knee and both ankles (minor but painful, not surgical levels). My ANA tests were done with some 17 other tests all at once and i have the appointment ths tuesday to get results. > My mother has MS, so that's one of the first things I asked them to > check out. I get no muscle spasms so unless the same tests check for that, it will be unknown. > I also get nasty headaches, pins and needles feeling in hands and > feet. And just have a general achy feeling in my whole body like I'm > coming down with the flu. And I can't seem to get enough sleep. > Still waiting to get the second set of blood tests scheduled, mostly > likely to happen next week. I dont get headaches in abnormal numbers as far as i can tell. I am extremely pain tolerarant compared to most i am told (multiple docs, not just one). I get the rashes you have and have since 2004 (possibly earlier but am sure of then, malar rash which is sun reactive. I dont bother with makeup and havent for years except a 1-2 time a year special occasion. I have these dots of sun reactive rash on my arms which sometimes itch and get mildly crusty. No other itching until recently my back has an irritating one from time to time. Feeling like coming down from the flu is common associated with mild fever. Can be 6 weeks apart, or 6 days. Can last 2 days, or 6. The referral Doc said the most interesting thing is I can not recall having an actual developed flu, for 4 years or more. This is very odd. Hair loss which you do not mention. Tiredness but may not be to your level yet notable. Night sweats and sweaty feet but that might just be aging or something. Weak nails which may also be aging but radical change in past 3 years more notable last year. > So, what if any advice can someone give? I know I still have to wait > for blood tests, but just looking to see what kind of changes I need > to make if the diagnosis is Lupus. As far as i can tell, just like you not sure what to expect. I know due to my degenerative disc disease (possibly lupus caused, test results soon) I had to make some radical changes to my activities. I have no 'hip pain' but have 2heriations of lower back discs. What confuses the Docs is I am still far more 'limber' than MRI's say I should be but this was due to regular sorts of exercise that enhanced this. Just normal living style things. I get to save money on blush as I don't need any added ;) Smile, there are worse things to have. Thats the big one the Doc said. It's not fun, but most have at least 15 years and there are a huge number who've had it for 25-40. I know that's scarey at age 30 where you are but you are apt to have the longer span if you have it and get treated sooner, than us older farts (I'm 48). If you have just the skin type and the rest is something else, your chances of lupus being a danger to your longevity go way down. I'm as nervous as you just now. Carol Facts are 'currently', that 90% of the early, newly diagnosed lupus patients, and most lupus patients now on treatments ** who are compliant with their doctors ** will live as normal a life span as any other person without lupus. So don't be reading and buying into the old books that say 10 to 15 years etc.... just NOT true these days.... back when I was dx'd, almost 30 years ago now, it was a 10 to 15 year prognosis; and when I actually first exhibited symptoms and signs of the illness at age 12, the prognosis was 5 years!! BUT here I sit at age 56 going 57.... and living a quality filled life too..... so please keep updated with current literature and avoid the old stuff, it just scares you for no good reason! hugs, Shelagh Lupus - Invisible In Plain Sight @ http://members.shaw.ca/systemiclupus Dr. Wallace's Lupus Books from 1 to 4 are all great and written so as the average 'joe/jane' can read them too.... those are my recommendations for good reading for newly dx'd lupies! "cshenk" wrote in message |<quote> | Smile, there are worse things to have. Thats the big one the Doc said. [quoted text clipped - 6 lines] | I'm as nervous as you just now. | Carol </quote> > Facts are 'currently', that 90% of the early, newly diagnosed lupus patients, and most > lupus patients now on treatments ** who are compliant with their doctors ** [quoted text clipped - 26 lines] > | I'm as nervous as you just now. > | Carol </quote> Thanks for the info Lou |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2009 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.