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krassau

Is this pre-scleroderma?

10 posts in this topic

Hello,

 

I have suffered from a multitude of symptoms for 11 years and I believe I am suffering from some sort-of autoimmune disease but what exactly I am not sure. It all started right after my son was born and I was 30 years old. I began having joint pain and stiffness but not redness or swelling. Then 8 years ago I developed Raynaud's and high blood pressure. About the same time I noticed small round bumps under my skin- like bb's. Alot are around my elbows but also my arm pit and back of my thighs. I have fatigue quite often. Some days I wake up and I feel great but more often than not I wake up tired and achy. In the winter I can get so cold that I have to take a hot bath to warm up. I have had acid reflux for about 20 years. I went to the rheumatologist 3 years ago and he ran some blood work. My ANA came back positive in a speckled pattern. He ran some more blood work but didn't find anything else unusual. He diagnosed me with fibromyalgia but said I could have early scleroderma. I thought that was ironic because my mother-in-law has diffuse scleroderma. Last year I my right hand began shaking. I thought I had Parkinson's! But the neurologist said it was just anxiety and after I quit my second job and cut down on my stress the shaking went away. It sometimes returns when I'm nervous. I've been having a lot of pain and stiffness in my joints. Also, I run low-grade fevers which bring on the chills. I noticed this summer when I spend the day at the beach that night I will develop a fever and chills along with a headache and body aches. Maybe Lupus or Mixed Connective Tissue disease? I just feel like something more is going on other than fibromyalgia. Any opinions would be appreciated!

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Krassau,

Welcome to the Sclero Forums! It sounds like you been dealing with a lot of various symptoms over the years. It's interesting that your rheumatologist says that it may be early scleroderma. Did he give you any indication of where to go from here? I'm not a doctor and have no medical experience, so I'm not qualified to suggest whether or not you have scleroderma based on your symptoms. Many of your symptoms can be caused by so many other things, that I can see why your rheumatologist can't be sure. As you probably already know, scleroderma is a very difficult diagnosis. As a result it is advised to see a scleroderma specialist. Do you know of any, or does your rheumaologist have one that he could recommend? Here is a link to a couple of abstracts on scleroderma criteria. Scleroderma is so different for everyone, so I don't know if anyone actually meets all of the criteria. For example, I don't have skin involvement nor joint pain, but I do have Raynaud's heartburn, lung involvement and heart involvement. So keep pursuing a diagnosis of some kind, especially if you feel that it's not fibro. It's only fair that you know what's really going on. Please keep us informed as to how you are doing and if you have any more questions.

 

Again, welcome!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Krassau

 

Welcome to the forums! If you want to see a scleroderma expert we have a list of them for you. As Janey's already said the road to a sclero diagnosis can be a long one and even when you have one that can be the only thing you have in common with other people with sclero because everyone has their own version of the disease. I have skin, joint, gastrointestinal and heart involvement but my ANA is negative and always has been.

 

Keep pursuing the matter and keep posting.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Krassau,

 

I'm just popping in to welcome you to the forum. We're a friendly bunch and many of us went a long time before we were diagnosed, so we know how unnerving it can be. I think I'd probably make another rheumatology appointment and definitely point out the small lumps under your skin. Here's hoping you get some relief soon.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Krassau

 

And welcome to the forum.

 

I have Diffuse Scleroderma which showed first signs last May and developed pretty quickly.

 

My initial symptoms were numbness, pins and needles and Raynauds accompanied by a texture of small lumps, not unlike cottage cheese, in fleshy areas such as under my arms, thighs etc. They have now gone.Is this the kind of thing you have?

 

Also my fingers itched, swelled and stiffened but I had no blood indicators.

 

The rheumatologist suggested possible Scleroderma and when I looked it up on the internet, after my first forays into horror filled sites, I found this one. An invaluable piece of advice (among many others) that I picked up here was to get myself referred to a specialist centre. This has made a world of difference.

 

Take care.

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Hi Krassau,

 

Welcome to the forums. I'm glad you've joined us. Sounds like you definitely have something going on, and I have the say the first thing that popped into my head is Lupus due to the symptoms and the speckled pattern ANA. However autoimmune disease can mimic each other so closely that sometimes it takes awhile for everything to play out, and the proper diagnosis be made. From the symptoms you described, I don't see Fibromyalgia in there anywhere other than fatigue, so it's strange to me he chose that label.

 

Again welcome! :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Krassau,

 

I can't really add to what others have said, but I want to give you a hearty welcome to Sclero Forums. And a nice warm hug, too! :emoticon-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Thank you for all the support and information. I found it interesting the reference to a texture of small lumps, not unlike cottage cheese, in fleshy areas such as under my arms, thighs etc. because that is what I have. Some lumps are bigger than others but they are found under in the fleshy areas but also a few on my arm below the elbow and in the arm pit. I also do not find the fibro diagnosis fits all of my symptoms. I do not know why the rheumatologist ruled out Lupus but said perhaps early sclero. I think it's time to go to another rheumatologist for a second opinion.

 

Sincerely,

 

Linda Krassau

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Hi,

 

For my first post it would be great not to start every sentence with "I" but it seems hard not to.

 

I found this thread by searching sclero.org for anyone with experience of tender, lumpy, subcutaneous nodules, that feel a bit like cottage cheese. And firstly, to those posters here with these exact things described, I really would love to find out how you are faring.

 

Because I have the same...they were a feature within months of becoming ill, and are quite slowly spreading through my tissues, but starting in upper arms, armpits, torso, back of thighs (where they give me most grief).

 

Finally a new rheumatologist palpated these carefully last visit (other doctors just say 'ah, interesting') and noted they were cord-like and run along the tendons, she thinks.

 

I so far have no diagnosis for my 5 year illness, involving skin (electron microscopy positive for some abnormal structures/activity, but with no surface thickening); Raynauds; 'non-specific' nailfold capillaroscopy abnormalities; numbness; nausea; GI dysmotility; weight loss of 50 pounds; proximal muscle fatigue; general fatigue; puffy, stiff hands and feet, in the mornings; carpal tunnel syndrome; tinnitus; glaucoma; 'wasted' muscles in calves, forearms and hands; muscle twitching; muscle pain/stinging; stinging skin as well. I can walk okay, but any time or distance gives me numb, 'dead' feet and legs and I need to use my walking stick. The list goes on.

 

The worst thing really is the pain, so unspecific I describe it as every cell on fire. Thankfully my doctors acknowledge the pain I am in, and provide medication for that, which helps me function. But importantly, no autoantibodies are found, so official bottom line: no blood indicators/no thickened skin = no connective tissue disease.

 

I live in hope that a doctor will peruse my ridiculous list of symptoms and have an AHA moment. In the meantime, it is like a frustrating puzzle, and as more than one doctor has recommended, "We await developments."

 

So, my main reason for posting is to find out how those folk with tender little lumps are faring. Can you shed any light now on how these lumps fit into the bigger picture for you? Any info would be so very much appreciated.

 

Best wishes to all.

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Hi Carin,

 

Welcome to these forums!

 

I'm sorry that you've been suffering with so many unpleasant and worrying symptoms. Unfortunately Scleroderma is notoriously difficult to diagnose, not less because it presents itself in so many different forms. Also it is quite possible to have negative blood tests and yet still develop the full blown disease and vice versa, as Amanda has stated earlier in this thread and many of our members can testify.

 

I've included links to our medical pages on Autoantibodies which I hope you'll find interesting and also to our page on Skin Diseases Similar to Scleroderma to give you some more information.

 

It's quite possible that our other members will post again with more first hand experiences to help you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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