RE:s welcome

[Guest guest]

Hi and thanks for your warm welcome. You may be sorry you asked

about my diagnosis. I try not to bore people unless they ask so here

goes ...you did ask(chuckle)...basically this mess started 10 years

ago. I taught arts and crafts and started having a terrible time with

my hands..they did a bilateral carpal tunnel surgery. 3 months later

an EMG showed it was worse. The story then became: test...test..test

MRI of the brain showed hyperintense areas so I had MS....(not)

Then MRI of the spine showed cervical and lumbar radiculopathy also

thoracic spine showed osteophytes....esophagram showed

dysphagia...blood test showed cryoglobin positive...low white cell

counts...no positive ANA,RA,or anything positive in lupus panel.

At that point the diagnosis was fibromyalgia. Now I am beginning to

think I am a total nut case...so off to the shrink...his

diagnosis;;;;severe depression due to severe and chronic pain, OK

maybe I am not nuts...but at this point I swear off all doctors. Then

my hands start this claw thing , cant get them straight and I have

this beaut of a rash all over my body...people actually moved away

from me in stores...i guess they thought i had some awful stuff they

might get...at this point off to the rheumy they send me...he takes

one look and says...have you ever heard of scleroderma? I say like Bob

Sagets sister, and am thinking i am a gonner...he says no not that bad

but educate yourself as much as possible...anyway the rash doesnt go

with scleroderma and what they saw in the MRI of the brain was central

nervous system attack of lupus, so now to answer your question my

rhuemy has never said he thought it was an overlap he felt that both

disease processes were going on. The scleroderma seems to be the devil

of the two as I have stiffened, yucky, skin to my elbows, and fom my

feet to knees. I have a hard time moving my hands and big bumps above

my knuckle joints. Also a NEW test has them sending me to a lung guy

because there is a restrictive disease in my lungs, so now there is a

new way to stress out so I dont have to...also they have kept the

fibro in there: my understanding is with these connective tissue deals

it is part of the package. I am 44 and worked for 17 years then tried

part time because I couldnt seem to get my act together. After 4 years

part time i just could not do it anymore...I applied for SS 4 years

ago and my hearing is set for April 19....my lawyer seems to think it

is a done deal...I could tell you gobs more but I bet at this time you

are thinking Boy am I sorry I asked.Thanks for asking...I have been

reading all your posts in hopes of trying to help my SIL, but I see so

many common areas , that it has helped me also....I think you have a

great group here and dont tell the scleroderma group I said this but

you are much warmer and friendlier. I am trying to get my SIL to join,

but she is a new computer user and just learning the ropes....once

again Thank you for making a newbie feel welcome and I hope I didnt

bore you to much...Kathi in OK

[Guest guest]

Oh dear, Kathi! That's some story. And I'm sure that was the

super-condensed version. I wish it were an anonymous case study I read

and not a summary of your troubles. Thank you so much for telling me so

many details. It really helps to hear sagas like yours. I certainly

wasn't bored. I just wish you didn't have to live it.

Currently, none of the physicians I have seen have agreed on a

diagnosis, but I do have one of RA and one of polyarthritis. I don't

think it's RA. The physicians have pondered autoimmune thyroid disease,

Sjogren's syndrome, lupus, scleroderma, MCTD, and some sort of overlap

syndrome. Fortunately for me, whatever is going on is mild.

I know someone (not in the group) who has been between a diagnosis of MS

and CNS lupus for what seems forever (a few years). It stinks. I wish

they could diagnose these diseases earlier and with more certainty.

So, do you have limited systemic sclerosis? Or is your physician calling

it CREST? Do you have Raynaud's? What sort of rash do you have? If your

illness began roughly 10 years ago, how many years did it take to get

the diagnosis of lupus and scleroderma?

Well, that's enough of my nosy questions for now. I don't want to drive

you away, LOL!

I hope you get your SS on the 19th. Good luck! I'm glad your lawyer is

confident. I think you shouldn't have had to wait four years, but that's

the system.

When do you see the pulmonologist? Try not to worry. At least your

physicians seem to be vigilant. I hope that it turns out to be not too

serious.

Please do ask you SIL to join when she's got the computer figured out.

[ ] RE:s welcome

> Hi and thanks for your warm welcome. You may be sorry you asked

> about my diagnosis. I try not to bore people unless they ask so here

> goes ...you did ask(chuckle)...basically this mess started 10 years

> ago. I taught arts and crafts and started having a terrible time with

> my hands..they did a bilateral carpal tunnel surgery. 3 months later

> an EMG showed it was worse. The story then became: test...test..test

> MRI of the brain showed hyperintense areas so I had MS....(not)

> Then MRI of the spine showed cervical and lumbar radiculopathy also

> thoracic spine showed osteophytes....esophagram showed

> dysphagia...blood test showed cryoglobin positive...low white cell

> counts...no positive ANA,RA,or anything positive in lupus panel.

> At that point the diagnosis was fibromyalgia. Now I am beginning to

> think I am a total nut case...so off to the shrink...his

> diagnosis;;;;severe depression due to severe and chronic pain, OK

> maybe I am not nuts...but at this point I swear off all doctors. Then

> my hands start this claw thing , cant get them straight and I have

> this beaut of a rash all over my body...people actually moved away

> from me in stores...i guess they thought i had some awful stuff they

> might get...at this point off to the rheumy they send me...he takes

> one look and says...have you ever heard of scleroderma? I say like Bob

> Sagets sister, and am thinking i am a gonner...he says no not that bad

> but educate yourself as much as possible...anyway the rash doesnt go

> with scleroderma and what they saw in the MRI of the brain was central

> nervous system attack of lupus, so now to answer your question my

> rhuemy has never said he thought it was an overlap he felt that both

> disease processes were going on. The scleroderma seems to be the devil

> of the two as I have stiffened, yucky, skin to my elbows, and fom my

> feet to knees. I have a hard time moving my hands and big bumps above

> my knuckle joints. Also a NEW test has them sending me to a lung guy

> because there is a restrictive disease in my lungs, so now there is a

> new way to stress out so I dont have to...also they have kept the

> fibro in there: my understanding is with these connective tissue deals

> it is part of the package. I am 44 and worked for 17 years then tried

> part time because I couldnt seem to get my act together. After 4 years

> part time i just could not do it anymore...I applied for SS 4 years

> ago and my hearing is set for April 19....my lawyer seems to think it

> is a done deal...I could tell you gobs more but I bet at this time you

> are thinking Boy am I sorry I asked.Thanks for asking...I have been

> reading all your posts in hopes of trying to help my SIL, but I see so

> many common areas , that it has helped me also....I think you have a

> great group here and dont tell the scleroderma group I said this but

> you are much warmer and friendlier. I am trying to get my SIL to join,

> but she is a new computer user and just learning the ropes....once

> again Thank you for making a newbie feel welcome and I hope I didnt

> bore you to much...Kathi in OK

[Guest guest]

--- <Matsumura_Clan@...> wrote:

> Oh dear, Kathi! That's some story. And I'm sure that

> was the

> : I think you are a sweetie...you must be to

have read all I wrote and ask more questions. I

promise I will keep the answers short this time and

not write another novel....I want to ask you something

how do you feel about not having a positive

diagnosis...that was the one that drove me crazy...I

felt relieved that i finally got an answer..to me that

was the hardest part...the rest i can deal

with..(usually).

Your friends case is not unusual MS plaques and CNS

lupus lok exactly the same on MRI of the brain....or

so they tell me, usually the follow up with spinal

tap, and evoked responce tests.....the spinal tap is

not fun...i had one hoping it would rule out MS...then

they tell me just because it doesnt show anything the

next time you flare....well do another....Ill

pass....the rheumy was the one that said NO

MS.....it is CNS lupus...OK now to answer your

questions...my diagnosis

is systemic scleroderma...it has so far hit esphogeus,

skin,maybe lungs(docs think so) my breast are full of

calcium deposits that freak out radiology everytime I

have a mammo, but after they took a good chunk of

breast doing a biopsy...(I really needed every bit I

have there) my rheumy said NO MORE it is being caused

by the scleroderma....the rash I get is like these

huge hives and I am not kidding they are huge...I also

have the telangiectasias that come with scleroderma

they are all over my arms and a few on my face....I

always tease

the doc and said i got bored so was setting up a dot

to dot game with a red magic marker..yes I have severe

raynauds....just stress me out or get me cold and you

dont need a flag....i also have liverdo reticularis

which looks pretty funky at times...I just tell people

it is a new fashion statement in hose...I have had the

lupus dignose 4 years and the scleroderma 2...but for

5 years i have had doctore telling me your skin is

really strange , but im not sure what it is....now I

get and quite often except for my rhuemy you are the

first patient I ever had with scleroderma..I think I

answered everything you asked....now you have to tell

me all about you....do you have the funky skin? If so

I didnt think that was part of RA, I know reynauds can

go with RA, also with Lupus....please tell me about

you...and Thanks for asking about me...I try not to

talk about my problems to much,when I was first

diagnosed I was pretty upset and a friend asked me...I

started to tell the story and she said " But you dont

look sick " so now I keep it pretty much to

myself....

it has been great reading all your posts and getting

to reply to your questions...you all seem to be great

to and for each other.....you really do have a great

group..and yes I am still working on my SIL...she has

so many questions and is so depressed...her RA titer

was 600 her pcp says RA and sent her to a Rheumy who

says i dont think you have RA i think it is

fibromyalgia...she hadnt been sick at all, and last

year contracted parvo-virus B19 at the school she

teaches at.....she has never felt good since and now 3

months in a row she has this high RA test...so I dont

know...I told her to get a second opinion....maybe you

have some ideas...

Well looks like I did it again and wrote you a novel''

to you and everyone in thr group heres hoping tommorow

is a better day...........Kathi in OK

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