Hello,
I found this group while doing a google search looking for "answers" to
my many symptoms.
I am beginning to feel like I am just going plain old crazy. Let me
start by saying I have been diagnosed with NOTHING. Every time I go to
the doctor, I feel like they do not listen to a word I say.
"It" all started about 3 years ago. I was having diarrhea every time I
ate anything. It didn't matter what I ate or when I ate...I had to be
sure that within 15 minutes I had access to a bathroom. I got so sick
of it, I went to the doctor who told me it was probably my gall bladder
and ordered an ultrasound. Well when I went back to see him for the
results, the first thing he asked me was how many drinks a day I had.
I had no idea what he was talking about. He explained that my gall
bladder was fine but my liver was not. He then determined that because
I do not drink alcohol, that I had what he called "fatty liver". He
gave me a printout of a diet plan and that was it. Shortly there
after, I was left with no health insurance and have none to this day.
The diarrhea problem went away and has not returned. Then I began to
get these weird rashes. I had one on my waist that went from my belly
button to my side. It was bright red and did not itch but hurt. I
went to the doctor (a different one) 3 times for that. They prescribed
all sorts of things and he told me it was from wearing my jeans to
tight (which I don't). After that one cleared up, I got another one
(about a year later) that started on the back of my arm and was about
the size of a quarter. It seemed to "spread" and I had about 5 or 6 of
them. I went to the doctor and they did a "scraping" and had no idea
what it was. It took months for it to go away. Then last August,
while trying to sleep, my head began to itch terribly. I immediately
thought I perhaps had lice, but the next morning, I had these red rashy
like spots on my forearm and all over my legs. I then thought maybe I
had poison ivy as I had been in the woods the day before. After trying
to self treat and it only getting worse, I went to the doctor who said
he had no idea but thought maybe it was scabies. He wrote me a
prescription for some cream to kill them and although I didn't believe
that was what it was, I did it. Well, that didn't help at all. About
a week later, I broke out in a different type of rash that was on my
neck. It itched terribly and began to spread to my face so I ended up
in the emergency room. They had no idea what it was but put me on
prednisone. It took about two months for both rashes to clear up.
Four weeks ago, I broke out in these tiny little blisters that itch
only before they appear. I only have maybe 10 or so of them on my arms
and legs but I also have some other weird things going on. I have
these tiny red spots, about the size of a freckle. There are three on
my forehead, several on my chest and a few on my leg. They don't itch
or anything, they are just bright red. I also have tiny bruises. They
are about the size of a finger tip. They appear overnight and are very
purple then fade within a day or two. My eyes are so dry I feel like I
have sand in them. And my knees hurt....worse than usual. I've always
had knee pain whenever it is going to rain...ever since I was about
four years old but they have hurt for weeks straight. Yesterday, I was
getting in my car and suddenly, my neck hurt. It feels like my
shoulder is out of joint and my arm feels funny right down to my
fingertips. I went to the doctor last week (a clinic at the local
health dept.) and she said it was "probably scabies". I wanted to
scream. I asked her if there was a test they could do to make sure and
she said no, and wrote me a prescription for keflex. I started taking
that last week Wednesday only to discover I am allergic to that (I am
allergic to penicillin too).
For anyone who actually read all that, I have to say....THANK YOU! I
just need to get this off my chest as I feel like I am all alone and
going crazy. The only person who does understand is my mother who I am
currently not on speaking terms with. She has fibromyalgia and Lupus.
She told me last year that is what she thinks I have because I have
these tender spots on my back that hurt like heck if I touch them. My
husband thinks I am nuts because I was always making him look at my
back and see if there was a visible bruise. I am a stay at home mom to
five children. I have no health insurance and therefore cannot afford
to be constantly going to doctors that ignore me. Does any of this
sound like lupus? I was tested for it once a few years ago and the
doctor said I did not have it because some level was not high enough...
The only "sign" I have for sure is the butterfly rash but I am a
redhead and my face has always been red. I was once treated for
rosacea but had to stop taking the meds because I became pregnant.
tigtig24 - 18 Apr 2005 14:52 GMT
you are not crazy at all.... im curently going threw doctors like i
change my clothes... because of the same reasons. i do not have the
rash problems all over my body but i have numbness in limbs and i have
those red dots your talking about. my eye doctor wrote a letter to my
family physcian telling him my optical nurves are dieing along with my
muscles in my left eye. i drop things all the time because my hands go
numb. and my C4 is low. which means my immune cells. the last doctor
i went to told me that i have a phycological problem and there is
nothing wrong with me. im making these things happen to my self. and
for me to not worry about it im fine. every joint in my body feels
like its burning over a camp fire. and my memory is fading and my
recall is bad. speech is slured and i get really bad headaches
everyday and real sick if im outside. i live in california so the heat
and sun is the cause of feeling sick... just hang in there it is
really hard to find a doctor that understands and i bet your getting to
the point to were your affraid to tell a doctor about everything that
is going on for the fear that they think your nuts and you wont get the
proper treatment. but believe it or not there is a doctor that cares
but the down side is you have to search for them. meaning you have to
go threw a few to find one that cares. the first hint is that when you
start telling them about your problems and they start cutting you off
telling you that is impossible and start talking to you about
depression and mental evals. cutting you off in the middle of the
conversation alone is anoph for me alone. that is just from my
personal exsperience. well your not alone and dont ever think that you
are many of us are going threw the same thing and it just takes time
hang in there...
Andy - 18 Apr 2005 16:01 GMT
>Hello,
>I found this group while doing a google search looking for "answers" to
[quoted text clipped - 3 lines]
>start by saying I have been diagnosed with NOTHING. Every time I go to
>the doctor, I feel like they do not listen to a word I say.
You've probably come to the right group :)
[munch]
>For anyone who actually read all that, I have to say....THANK YOU! I
>just need to get this off my chest as I feel like I am all alone and
>going crazy. The only person who does understand is my mother who I am
>currently not on speaking terms with. She has fibromyalgia and Lupus.
>She told me last year that is what she thinks I have because I have
>these tender spots on my back that hurt like heck if I touch them.
None of us here are doctors. However that does sound more of a fibro
symptom.
> My
>husband thinks I am nuts because I was always making him look at my
[quoted text clipped - 3 lines]
>sound like lupus? I was tested for it once a few years ago and the
>doctor said I did not have it because some level was not high enough...
Well, there's a range of blood tests that can be done, and other things
too. http://www.northeastlupus.org.uk/hughfaq.htm lists them, and the
rest of that site will give you lots of other info.
>The only "sign" I have for sure is the butterfly rash but I am a
>redhead and my face has always been red. I was once treated for
>rosacea but had to stop taking the meds because I became pregnant.
Remember the "white coat effect" - if you book an appointment to show a
medic something, by the time you get to see her/him the something will
have gone away!

Signature
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
RhondaM - 18 Apr 2005 22:29 GMT
> Hello,
> I found this group while doing a google search looking for "answers" to
[quoted text clipped - 74 lines]
> redhead and my face has always been red. I was once treated for
> rosacea but had to stop taking the meds because I became pregnant.
Sounds like you need a good doctor. Have you seen a Rheumatologist? I know
you do not have health ins, but a RD is the place to start. What part of the
country are you in? I think on www.lupus.org there is a place where you can
search for docs in your area.
anyways I do not think you are crazy, I went through something similar. It
took docs over 10 years to diagnose me. I have Lupus and RA. Docs would
treat me like I was crazy or they would give me a temp solution. It is not
fun nor is it fair. Hang in there ok?
RhondaM
JQ - 19 Apr 2005 00:10 GMT
Hi, just wanted to let you know you're not crazy or alone. Lupus seems
to come out in so many different ways in different people and the
average person or doctor doesnt seem to understand that and I know it's
frustrating. I too have very similar symptoms, digestion diareha
problems for about a year on and off and then rashes started, now every
time I exercise I get hives very bad for the past 10 years and not one
doctor could help me. However chatting online I learnt what it was
Chronic Urticaria (exercise induced hives) and got the help I needed.
Also I have hives on my chest and arms and face occasionally from the
sun. I too am a redhead with Rosacea, red cheaks all the time. I'm sure
it's all related to the lupus. Painful joints, knees and ankles for no
apparent reason and I'm only 27 years old. Just a pain in the butt all
it is. But I just wanted you to know we all think we're crazy at some
point when no one will listen but we're not, we're all learning here
and can learn from eachother.
I'd recommend seeing a rheumatologist who specializes in Lupus. some
rheumatologists aren't so good in that area.
All the best to you! Jacquie
cloud - 22 Apr 2005 02:49 GMT
I have been diagnosed with uriticaria (sorry but can not spell worth a dang
tonight) but have also been diagnosed with atopic and seborheic dermatitis
and rosacea, lichen planus amoung a few other rashes. When you mentioned
the pain with the rash and how it was to one side, right off I said, ahh-ha!
shingles! not uncommon to have any one of these rashes or all. Sometimes
shingles reoccurs but it generally takes a while to clear up in anycase.
You make also be allergic to nickel which can be found in snaps on pants,
cheap jewelry, watchbands and other mixed metals. Then there is the
infamous prickly heat rash and as someone recently made me aware of, yeast
infections occur on the skin also. As there are so many rashes, it would
take a dermatologist to determine each one you may suffer from. But my
guess is, aside from the rash which was painful and could have been
shingles, you are possibly suffering from a number of chemical or allergic
skin sensitivities. Then again, if a person were to draw a map, Lupus can
be the land of 1000 rashes. My rashes and autoimmune disease rather
flourished together. But being as there are over 150 autoimmune diseases,
my guess is your symptoms can reflect upon several specific ones, it may be
in your better interest to have a battery of blood tests done to determine
first whether or not such possibilities exist.
Then if need be, you most likely can or will be referred to a specialist to
help treat one or more conditions.
How's this sound to you?
It may be a very good idea to go to your local health clinic and see what
help is available to you there. Be sure to tell them about your liver as
this may need checking again. What that doctor said about the fatty liver
sounded like it may be worthy of a second or third opinion.
Lyme disease or Hepititis are possibilities too.
Hope you are feeling better soon.
Always,
..· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*
> Hello,
> I found this group while doing a google search looking for "answers" to
[quoted text clipped - 3 lines]
> start by saying I have been diagnosed with NOTHING. Every time I go to
> the doctor, I feel like they do not listen to a word I say.
<snipped for brevity>