Questions

March 16, 2001

Michele,

First, what's this talk about being " on the computer too much " ? I must take

the position that there is no such thing! LOL!

I know that you are upset about how you are feeling, but try not to worry.

Just take one day at a time, keep reading, and make the most out of those

upcoming appointments with the rheumatologist and endocrinologist.

Try not to believe you may have scleroderma yet. First, you don't have any

skin changes and your other symptoms can be explained by other diseases or

syndromes. Scleroderma is quite rare. Its incidence is somewhere between 1

and 25 people per million, depending on which study you consult. A diagnosis

of scleroderma is not an automatic death sentence, as many people mistakenly

believe. Like SLE, scleroderma is a rheumatic disease that has several forms

and ranges from a very mild affliction to a serious and life-threatening

condition. I have read Dr. Maureen Mayes' " Scleroderma Book " (which is

excellent, by the way) in which she describes a patient of hers who is in

her 90s and doing well.

The sore throat you describe is not typically associated with scleroderma,

whereas heartburn and difficulty swallowing is.

In chronic fatigue syndrome (CFS), a persistent sore throat is a hallmark

sign. A CFS/fibromyalgia overlap syndrome can explain many of your symptoms,

even the Raynaud's. But are you very sure you have Raynaud's? Do you ever

have signs of what is happening to your feet in your hands? Have you ever

had any ulcers on your toes or fingers? You aren't a smoker, are you? Make

sure you discuss Raynaud's with your rheumatologist.

Your hypothyroidism may also be responsible for a quite a few of your

symptoms. It's best to discuss that aspect with your endocrinologist.

Medications can cause problems with your throat or other areas of your GI

tract, too.

Naproxen is an anti-inflammatory drug very similar to ibuprofen. I'm not

sure of its efficacy in the treatment of Raynaud's.

What treatment you receive from any of the physicians you consult depends

(or should) on what diagnosis they give you. If they can't give you a

diagnosis yet, then they will try to figure out a safe way of treating your

symptoms.

Hope this info helps you, Michele.

----- Original Message -----

From: <ggrimes911@...>

< >

Sent: Friday, March 16, 2001 7:10 AM

Subject: [ ] questions

> Hi. When I have been sick, I stay home and probably sit on the

> computer too much. I have yet to be diagnosed, but this pain in my

> throat is driving me crazy along with all the other symptoms,so I am

> frantically searching for more information. Well, the one disease

> which mirrors most of my symptoms is scleroderma. (which is so scary

> to me). I have Raynauds-which I take Naproxen to keep it under

> control. (If it responds to this medicine does it mean that it not a

> severe case? I don't have nodules, just redness on my toes, numbness

> in my feet and toes.) I can tell the raynauds has been progressing.

> My skin has not become shiny though. The other symtom I have is this

> chronic sore throat (unlike a sore throat from a cold). I've had

> this for about a year now. That semed to be how my breathing pain

> flare up started too. I have a constant tightness in my chest and an

> iil feeling all the time. I am positive what I have is systemic. I

> have little joint involvement. Is scleroderma one of the more

> progressive autoimmune diseases, compared to RA or SLE? How long can

> people live with this disease? I also have hypothyroidism. I think

> somewhere I read that hypothyroidism can be a imitator of other

> diseases. Does this make sense? I go to my first visit with a

> rhuemy next week. My results last Feb. were ANA 160, RA <10. If my

> test come back inconclusive, do they usually start you on meds. with

> these symptoms? Thanks for your help. Michele G

March 18, 2001

,

Thank you for responding to my questions. You are a wealth of

information and calmed me down with these awful thoughts. What is

happpening to my body is happening so quickly and it is quite

shocking. Last night, I woke up in the middle of the night and my

legs were red and my knees felt like they were on fire. I slept on my

stomach. My knees have been achy all day. Does RA couse the back of

your knees to swell? Mine are a little swollen. I stopped taking

the Naproxen for 2 days so i could go to the Rhuemy tommorrow with my

symptoms unmasked. I don't have nodules, but my toes turn numb,

blue, purple, white, hurt and then swollen and red when they warm

up. My hands are staring to react also. No, I don't smoke. Thank

you so much for your help and support. You seem to be one of many

angels in this group. Michele G

> Michele,

>

> First, what's this talk about being " on the computer too much " ? I

must take

> the position that there is no such thing! LOL!

>

> I know that you are upset about how you are feeling, but try not to

worry.

> Just take one day at a time, keep reading, and make the most out of

those

> upcoming appointments with the rheumatologist and endocrinologist.

>

> Try not to believe you may have scleroderma yet. First, you don't

have any

> skin changes and your other symptoms can be explained by other

diseases or

> syndromes. Scleroderma is quite rare. Its incidence is somewhere

between 1

> and 25 people per million, depending on which study you consult. A

diagnosis

> of scleroderma is not an automatic death sentence, as many people

mistakenly

> believe. Like SLE, scleroderma is a rheumatic disease that has

several forms

> and ranges from a very mild affliction to a serious and life-

threatening

> condition. I have read Dr. Maureen Mayes' " Scleroderma Book " (which

is

> excellent, by the way) in which she describes a patient of hers who

is in

> her 90s and doing well.

>

> The sore throat you describe is not typically associated with

scleroderma,

> whereas heartburn and difficulty swallowing is.

>

> In chronic fatigue syndrome (CFS), a persistent sore throat is a

hallmark

> sign. A CFS/fibromyalgia overlap syndrome can explain many of your

symptoms,

> even the Raynaud's. But are you very sure you have Raynaud's? Do

you ever

> have signs of what is happening to your feet in your hands? Have

you ever

> had any ulcers on your toes or fingers? You aren't a smoker, are

you? Make

> sure you discuss Raynaud's with your rheumatologist.

>

> Your hypothyroidism may also be responsible for a quite a few of

your

> symptoms. It's best to discuss that aspect with your

endocrinologist.

>

> Medications can cause problems with your throat or other areas of

your GI

> tract, too.

>

> Naproxen is an anti-inflammatory drug very similar to ibuprofen.

I'm not

> sure of its efficacy in the treatment of Raynaud's.

>

> What treatment you receive from any of the physicians you consult

depends

> (or should) on what diagnosis they give you. If they can't give you

a

> diagnosis yet, then they will try to figure out a safe way of

treating your

> symptoms.

>

> Hope this info helps you, Michele.

>

> ----- Original Message -----

> From: <ggrimes911@y...>

> < @y...>

> Sent: Friday, March 16, 2001 7:10 AM

> Subject: [ ] questions

>

> > Hi. When I have been sick, I stay home and probably sit on the

> > computer too much. I have yet to be diagnosed, but this pain in

my

> > throat is driving me crazy along with all the other symptoms,so I

am

> > frantically searching for more information. Well, the one disease

> > which mirrors most of my symptoms is scleroderma. (which is so

scary

> > to me). I have Raynauds-which I take Naproxen to keep it under

> > control. (If it responds to this medicine does it mean that it

not a

> > severe case? I don't have nodules, just redness on my toes,

numbness

> > in my feet and toes.) I can tell the raynauds has been

progressing.

> > My skin has not become shiny though. The other symtom I have is

this

> > chronic sore throat (unlike a sore throat from a cold). I've had

> > this for about a year now. That semed to be how my breathing pain

> > flare up started too. I have a constant tightness in my chest and

an

> > iil feeling all the time. I am positive what I have is systemic. I

> > have little joint involvement. Is scleroderma one of the more

> > progressive autoimmune diseases, compared to RA or SLE? How long

can

> > people live with this disease? I also have hypothyroidism. I

think

> > somewhere I read that hypothyroidism can be a imitator of other

> > diseases. Does this make sense? I go to my first visit with a

> > rhuemy next week. My results last Feb. were ANA 160, RA <10. If

my

> > test come back inconclusive, do they usually start you on meds.

with

> > these symptoms? Thanks for your help. Michele G

March 19, 2001

Michele,

did a great job of addressing your questions but I need to make a

couple of comments because your sore throat caught my attention. You have

my sympathy - I know what you feel like and I suspect that a constant sore

throat can drive you crazy. I had a sore throat for two years - lab tests

were ok, it was not red or swollen - there was no explanation and my

doctors could not figure out why. My Ra was getting worse and they started

me on gold injections. One of the first improvements was that my sore

throat went away. The sore throat was part of the RA flare. Since taking

the gold shots, I have not had the mysterious sore throat again. Maybe,

just maybe when they are successful in treating your disease, the sore

throat will go away.

A couple of months ago when I had my first round of pneumonia, my throat

was sore again but not red or swollen. My doctor suspected it was the RA

because I had been off Enbrel for awhile although I was still taking the

gold shots. Even going back on the Enbrel did not help. I really did think

I was going to go crazy with it - I could not stand the thought of years of

this again. When they did the blocks for my cervical spine problems, the

sore throat stopped. We figured that it was just from the muscles

tightening in my neck because of the neck pain. Unless you have cervical

spine problems, that is probably not the cause of the sore throat but don't

get discouraged - there is a reason for it and once they find out the

cause, they will fix it.

Scleroderma is scary but many people who have it live normal lives. Please,

don't worry about it at this point. If you do face it in the future, we

will be here to help you through it and encourage you along the way.

Another possibility from your symptoms is CREST syndrome. Patients with

CREST have symptoms of some or all of the following: Calcium deposits,

Raynaud's phenomenon, Esophageal swallowing problems, Scleroderma

involvement of the fingers and little red spots called Telangiectasia.

CREST does not ususally involve the internal organs and most people with it

do very well.

Good luck with your next doctor's appt. We will be anxious to hear what the

decisions are.

Pat

March 19, 2001

Michele,

Any inflammatory arthritis in the knees can result in the swelling you describe.

My knees became grossly inflamed and had to be drained on many occasions to

relieve the pressure. Now that I am on meds that work, my inflammation is

controlled. I still have swelling, but not as bad as I used to.

Good luck at the doctors. I hope you get answers and relief.

I have to agree with you that is an angel!

a

----- Original Message -----

From: ggrimes911@...

Sent: Sunday, March 18, 2001 5:32 PM

Subject: [ ] Re: questions