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Scleroderma Symptoms


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#1 debimum

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Posted 06 January 2007 - 06:25 AM

I am struggling with my rheumetologist and other doctors. I read something on this forum and I thought I would post.

My symptoms are:
SHORTNESS OF BREATH main concern
weak muscles - thighs arms CHEST MUSCLE and neck
fatigue every day
receeding gums
esophagus issues found a fluid sac or something mid way - and gerd.
enlarged thyroid on the right side along with a cyst on that side also.
I get crusty spots not very big but then they turn into like small birth marks
I have lumps under my skin, it started on my thighs, then went to my arms and now my abdomain.
Glands also are poped out and feel like they are going to pop sometimes.

I need to get a book to read, but maybe everyone is different. My family doctor suspected sclero all along or lupus. But now with all I am reading I think it's pointing to sclero. I have also read up on polymositis and some of those symptoms are on my list.
My rheumatologist is not really concerned about helping to follow through with this. also the ENT isn't either. he won't check into why my thyroid is enlarged on the one side. And he won't make an appt with the endocrinologist. so I am going to have to talk to my family doctor and ask him to make one. The endo needs a referal. My insurance doesn't.
Any help would be greatly appreciated.
Deb

#2 Elehos

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Posted 06 January 2007 - 11:17 AM

Hi Deb,

It's good to do a lot of reading, but at first I found that there was such an overlap of certain symptoms that it became impossible to tell from the reading alone what was going on. It's also possible to have an overlap of CTD's, and I have osteoarthritis, lupus, and sclero with a possible change or addition of diagnosis after the next round of bloodwork comes back, and most people here on the board have quite a mix themselves. Last month was the first time a doctor ran a CPK test to check for muscle damage, so I'm quite curious what the numbers might be when I see him on Wednesday. I think Janey was also diagnosis'ed with polymyositis, so she might be able to fill you in more on that.

The symptoms you do have certainly sound like sclero, but it's usually through the bloodwork that you eventually sort out what's happening, and sometimes the numbers take a while to to clearly pinpoint anything. Does your shortness of breath occur only during activity, or do you also get it while sitting still? It was bizarre when it started since I got winded laying in bed, and that seems to be a common problem mentioned on the board.

The deciding factors on the sclero for me was the calcinosis and mild skin changes, although the ANA (initially 1:320 nucleolar pattern) was the first clue to my general practitioner--almost all of my symptoms are internal, and some doctors don't want to be bothered with figuring out anything, just give them a pre-diagnosed case. The palms of my hands and soles of my feet now look like they were laminated and the skin is thicker, but I've also had tightening on my back for several months. The calcinosis had been going on for several years, but only started popping through the skin in recent months, so I didn't know I had it, but now that there is more external evidence, a good rheumatologist is more likely to see me.


If your rheumatologist isn't all that concerned about what's happening, stick with your general practitioner in the meantime, which is what I have had to do, and he's absolutely wonderful. Some know more than they let on to, and I see it as a good way to get more "fire power" when a good rheumatologist is available; the more medical evidence you have, the more they are willing to take a look. Yours just sounds apathetic, which is beyond me! We've all run into knuckleheads somewhere, so please don't give up looking for another one to help you just because of the one you're seeing. I hope you get a diagnosis quickly, and keep on with reading too!

Best wishes to you,
Elehos

#3 scleroguy

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Posted 06 January 2007 - 02:47 PM

Hi Deb,

I have Mixed Connective Tissue Disease (MCTD) which for me is Scleroderma and Dermatomyositis (Polymyositis with skin involvement). My doctors had me starting to believe that I was depressed or crazy until my Anti-RNP came back positive. That was enough, along with my symptoms, to get my diagnosis.

You may want to see if your doctor is willing to order this test for you.

According to one of the makers of the Anti-RNP Test Kit:

"RNP antibodies are ENA (extractable nuclear antigen) antibodies, present with high frequency in the sera of patients with collagen diseases such as SLE (30 - 40%) and mixed connective tissue disease (MCTD) (95 - 100%). Mixed connective tissue disease is a clinical disease combining features of SLE, Progressive Systemic
Sclerosis (PSS) and Polymyositis/Dermatomyositis (PM/DM). The presence of RNP antibodies in the sera of patients is essential for diagnosis of MCTD. RNP antibodies, when present alone at high levels, are diagnostic of MCTD. Lower levels of anti-RNP, in conjunction with other autoantibodies may be observed in PSS, Sjögren’s Syndrome (SS) and Rheumatoid Arthritis (RA)."

Best wishes,
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#4 debimum

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Posted 06 January 2007 - 05:25 PM

Thank you all. My symptoms are mostly internal. I have to get my lab reports and come back on. Two of my blood tests were marked at high. I also read what one of them meant and it was some kind of anemia. The only thing is the rheumatologist I have been seeing doesn't seem to be looking at all the tests. I feel a good doctor will refer you to someone who has more knowledge if they themselves can't come up with a diagnosis.
My back muscles seem to be the worst. I get cramps in them when I lay down. When I sit and work or typing here, I can feel them being extremely tight. I had severe spasams in my chest into my back in Oct. I couldn't move without it taking my breath away. I could not function. And then the ER doctor wanted to send me home because the few blood tests he did were negative. Luckily my daugther met me at the hospital and told him I can't go home the way I am, I can't function. I had to be put on IV meds for it. My thigh muscle get so tired and weak.
As for the laying and being short of breath, I can feel short of breath while laying down. but it's doing simple little things that gives problems. I can't lift things like four dinner plates without feeling the weakness in my chest muscles. It was almost like one day I woke up and couldn't walk up my stairs without going to use my nebulizer right after. My inhalers don't seem to be working very good anymore. I can use my rescue inhaler and a half hour later I feel like I need it again. I had a lung function test Friday and I will find out the results this week. I have a new young pulmonary doctor, female and she seems to be understanding. Sadly all these tests seem to be drawn out so long. And I feel like my life is drifting away.
I had to stop bowling with my husband because of the smoke in the building. I have never smoked nor my husband and we have been married for 31 years since age 18.
I have major discomfort in my torso around my stomach and esophagus. I had a chest CT at the hospital where I work and then had one done at another hospital where the pulmonary doctor is linked to and the first radiologist didn't mention the enlarged esophagus, where the other radiologist did. My pulmonary doctor saw this on the chest CT scan. Now why didn't the radiolosit who is trained in this see that. GRRR. My sister had a similar experience. She had a lower GI scan and on the report it said about a mass. The gastro doctor never told her about the mass and that it should be checked into. It was a few months after when she went to her general practitioner that he said what it being done about this mass that was found on your GI report. She said what mass.
I am going to write a letter to the hospital where I work and let them know the radiologists are missing medical problems.

Deb

#5 janey

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Posted 07 January 2007 - 09:32 AM

Deb,
Sorry to read about all the problems you are having with doctors! How frustrating! I went through that for about 8 months - two doctors that refused to give me bloodtests and attributing all my symptoms to age and weight. Yes, I was overweight at the time, but only 49 years of age!!! The experience you are having with muscle weakness, SOB with small tasks and laying down, stairs, etc - all sound extremely familiar. I have dSSc and polymyositis (PM). The PM affects the muscles between the knees and the chin so any weakness there could be due to muscle inflammation. The rheumatologist explained to me that the SOB was due to the chest muscles being too weak to help work the lungs and when I laid down it was worse because gravity kicked it. He confirmed the PM with a simple bloodtest - CPK of CK. It measures the muscle enzymes in the blood. The higher the inflammation the more enzymes. Below 200 is normal. Originally mine was at 3000, but I've seen others with a lot higher than that. So I would definitely request that bloodtest.

From my experience and that of others - if you don't get satisfaction from a doctor, then switch. You need to find a good rheumatologist that is knowledgeable about connective tissue disease; otherwise it could become just a guessing game and not one you want to play. Hang in there Darling and keep working to get some answers! Please keep us informed.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 debimum

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Posted 07 January 2007 - 10:34 AM

thanks janey, I will check my reports out that I had done the other month. I know two of them were high.
My muscles that are weak are the thigh muscles, arms, chest and I have problems with my neck and back.
yes I am sure I will be calling the general practitioner to make an appt with the rheumatologist at the teaching hospital. I am very weary of the one I have been seeing. After I get a diagnosis from another doctor I will write her a letter telling her how I feel about her doctor skills and making me feel like I am just another woman with aches and pains.
Janey, I too am 49 all but 50 and I know it's not all my hormones. And I get so tried of watching doctors give better care to the elderly and men then they do women. I am also going to ask the general practitioner to make an appt with the endocrinologist too. Even if my labs say it's normal, there is a reason why my thyroid is enlarged and I have a cyst on that side too. But then I have nodules on my right lung and my ovary on that side too. Strange how all the nodules are on the right side. And I have most of my pain in my body on the left.
Thanks again.
Deb