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Is It Sclero?


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#1 KristaRN

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Posted 19 October 2006 - 09:56 PM

I just can't decide if the symptoms I'm having are sclero or not. Sometimes I think definitely, sometimes I think maybe something else. I can't get in to see a rheumatologist until Nov 21, so of course I'm resorted to self-diagnosis. Sometimes I think it's more along the lines of scleroderma sans scleroderma - where the skin involvement is not all that profound. I'll try to keep this "brief."

I've been having terrible muscle aches and spasms for about 2 years, chalked it up to working so hard until the last 6 months and finally decided to see a doctor about a month ago. He ran tests and found my ANA to be positive at 1:160, speckled. The only thing he told me was to get in to a rheumatologist and take naprosyn. Since researching, I have to wonder if other symptoms I'm having are due to this. Like my hands, especially my dominant one, are almost always really dry, red, scaly and hard. Now I am a nurse, and I wash my hands like 50 million times a day, so I've always chalked it up to that. But then I recall how my skin started getting really dry and "flying" off when I undress quite a few years ago, which I started taking high dose Vitamin E for and has seemed to help until recently. Makes me wonder if my skin wouldn't be more pronounced if I hadn't started taking Vit E at that time. The skin on my uppers arms and neck have been rough for a while, but didn't think anything about it till now. Even the backs of my ears are rough. I didn't associate alot of other things until now either. Like how my left shoulder has been really stiff and have lost full range of motion for a long time. I had a tubal pregnancy and had surgery, to which I developed adhesions in like 3 months time. And how my scalp itches! I'm constantly asking my husband to check for lice!! (Thank goodness it's never been there, but I did treat it like it was once anyway I was just so sure!)

But then there are neurological things too, more and more lately. I used to laugh and joke about how I couldn't remember things - looking at a phone and couldn't say the word phone. I even couldn't come up with my own husband's name once - been married 21 years! When I'm really tired, I just can't spit out what I want to say, which is really bad if hubby and I are arguing. I just have to shut down and finish the argument later - which is probably for the best anyway! LOL! I find myself tripping alot lately and getting real bad weak and numb briefly in one limb or another. Almost makes me think MS.

So with all your experiences, what do you think?
Thanks for input and sorry for long message.

Krista

#2 Heidi

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Posted 20 October 2006 - 03:00 AM

Hi Krista,

Welcome to the board! I am glad you were finally able to get on and post.

Wow! Your question is a very difficult one to answer. It sounds like what you are describing might be scleroderma, but it also sounds like it could be other things. I have been diagnosed with undifferentiated connective tissue disease for 5 years and sometimes my rheumatologist is convinced that it is scleroderma and sometimes not. His latest comment was, "Your disease has been all over the board". I have 3 of the CREST symptoms (Raynaud's--but mild, Esophageal dysmotility, and telangieactasia) but my rheumatologist says he doesn't use the CREST designation. I gave up trying to get a definitive diagnosis years ago and, instead, started focusing on the specific symptoms (fatigue, joint pain, GI issues, neuropathy, etc.) and whether or not I was getting proper treatment for them. And, my rheumatologist is VERY good about making sure my symptoms are being treated.

Given what you described, it is possible that you will not come away with a definitive diagnosis when you see the rheumatologist, but do make sure you take a list of questions and that you get all of your questions answered and that your symptoms are being treated in some manner.

You have probably read the information on scleroderma on our site, but in case you haven't, here is a link that describe all the likely symptoms of it: http://www.sclero.or...oms/a-to-z.html

And here is another: http://www.sclero.or...rma/a-to-z.html

I hope you find this information helpful.

Warm wishes,
Heidi

#3 Patty

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Posted 20 October 2006 - 03:23 AM

Hi Krista,

Gee you sound so much like me. My head or I should say scapl itches so much I seem to always be itching it. As for your dry skin, it also sounds like me. I have limited sclero and I also have Dermatomyositis. Now I am no dr or nurse or anything but a woman who has MCTD. I tried to post you a couple links but I could not so e-mail me and I will send them to you. Obnr of the links is the A-Z dermatomyositis info and the other was ninds site info.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#4 janey

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Posted 20 October 2006 - 05:11 AM

Krista,
Welcome to the board! I'm sorry you are here due to your symptoms, but I'm glad that you have found us. As with scleroderma and so many of the other autoimmune diseases the disease is different for everyone. Your positive ANA does indicate a strong possiblilty that sometime autoimmune is going on and where many doctors go from there is by your symptoms. So as Heidi suggested, write stuff down. Write down all your symptoms, when they started, how they have progress - even those crazy little things that you really don't associate as a symptom - like the occasional heartburn or a swollen joint. Bloodtest are used to point the doctor in a direction, but in many cases, it's the symptoms that they use to make a diagnosis. Patty wanted to give you a link to Dermatomyositis, so here's a couple, both from our ISN site. Dermatomysositis and then the research information http://www.sclero.or...tis/a-to-z.html

I found your use of Vitamin E to be familiar. Before diagnosis when I saw the skin on my hands gettting rough and my finger swelling up, I too started taking Vit E. It certainly seemed to help me as well. My skin hardening never progressed passed my hands and even that has softened now. Like Patty I too have MCTD (diffuse sclero and polymyositis).

I hope you have a successful visit in November and get some of your questions answered. Just be prepared that you might not get a diagnosis on the first visit. There are so many autoimmune diseases. Some are easy and some are not. Please let us know how your visit goes and feel free to ask for more information. Even though this is a scleroderma site, we do have some information on other diseases.

BTW - To email someone directly you can use the "send a personal email" button in the bottom left of the message.

Again, Welcome.

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)

#5 Heidi

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Posted 20 October 2006 - 05:46 AM

Hi again,

I forgot to mention something in my last post. My scalp will get like that sometimes too and it drives me crazy! I had the doctor prescribe several things. The first is a medicated shampoo (Ketoconazole 2% shampoo). My scalp was really bad this past weekend and I used the shampoo three days in a row and it is SOOO much better! The doctor also prescribed Ketoconazole Cream, 2% and I rub that on my scalp where it really itches and burns. You might want to consider asking your doctor about either/both of these options. They sure work for me!

Warm wishes,
Heidi

#6 Sweet

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Posted 20 October 2006 - 07:01 AM

Hi Krista,

Reading your post was like listening to you talk about ME. I was diagnosed the end of 1999 with Lupus, then blood work and symptoms started changing, and was given the label of CREST. I only have the R, E, T right now, but my hands are changing, so on comes the S I guess. I think even for the rheumatologist that speciliazes in Sclero it's hard. When I read my chart, I see all kinds of diagnosis, there's Lupus, CREST, Connective Tissue Disease, Cutanouus something or another (lol) and Sjogrens. So many of the symptoms are so interelated it makes it tough.

Like Heidi, I don't even worry about what the 'name' of it is now, I just make sure he knows about all of my symptoms, so we can check into them, or treat them. Keeping a list and being prepared for your first visit is a terrific idea.

Symptoms I have are: Raynauds (not severe), joint pain, severe fatigue at times, lower back, upper back and left shouder pain, brain fog horribly!!! I know just what you mean when you can't think of a certain word when speaking. Sometimes, I just stand there and can't even remember what I was trying to say. It's getting worse and I'm embarrassed. I don't sleep well, because I can't get comfortable. In the past 3 weeks I have had thickening feeling and tingling in my forearms, that is new for me and I'll my doctor know next month when I see him. Lets see what else. lol ummmm I have to balance my energy carefully. It's been a year since I've worked full time, I just couldn't do it anymore. I am self employed now and work only a little bit. If I over due it everything shuts down, I can't think, I can't focus, I ache all over like I have the flu and I have to lay down and rest. At times my skin itches so badly I think I'll scratch myself raw.

Not sure if any of this was helpful, but I wanted you to know you are not alone. autoimmune diseases affect people differently, but they share a lot of similar components.

We're here for you!!!

Love Sweet
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 Hailee

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Posted 20 October 2006 - 11:04 AM

Hello Krista,

I hope that you can find some answers. Part of the puzzle seems to be neurological problems. You said you have experienced some numbness? I don't know if this could be significant in your case or not but perhaps you could ask to be checked for anticardiolipin or other antiphospholipid antibodies.

I have learned that some people have actually been falsely diagnosed with MS when in fact they had these antibodies in there system which were causing a syndrome that also has been linked to neurological problems.

When you see your doctor, make sure you write things down so that you don't forget.

Take Care,

Hailee

#8 Jemnibabe

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Posted 20 October 2006 - 11:54 AM

[b] Hello everyone. I have been reading posts on the old forum for weeks now and have been trying to keep up on this lovely new forum. The title of this thread is similar to some questions/comments I wanted to share so here goes. I have had tight/hard thighs for 6 or 7 years, gradually getting harder and progressing down my legs and up my back. Had an EMG and was told it definitely is not muscle or nerve-related. So began my search for some answers. My primary care physician sent me to every type of doctor in vain and she was totally baffled. A gentleman at work had Scleroderma and he seemed to have many of the same symptoms as I did so I began my research into Scleroderma. After waiting several weeks for an appt. with a very good dermatologist. doctor, I went to my appt. and she was also baffled but felt something was definitely going on under my skin. She attempted and was successful in getting me admitted to "Grand Rounds" at Johns Hopkins, (right here in my city) and after being evaluated by about 40 doctors and students the almost positive consensus was that I have SCLEREDEMA.........not to be confused with SCLERODERMA. Apparently it is somewhat related to Scleroderma but only/mostly in the problem with mucin deposits and extra collagen thickening and hardening under the skin. I don't fit perfectly into that diagnosis either but I am scheduled to get a skin biopsy soon which should totally confirm it. There is very little info on line concerning Scleredema but it is another autoimmune disease caused normally from Diabetes, which I have as well as Thyroid disease. Yes, I too, am a mess. LOL

Question is, has anyone here had any experience with this similar, but different disease? I also felt my experiences with coming up with a diagnosis might just help someone else who is experiencing the tight, hardened skin but not a lot of other symptoms of Sclero. I do have slight Raynauds and other similar symptoms of Sclero myself but the JH doctors all felt very sure I fit into a seperate category of CTD.

I hope it is all right with everyone if I hang out in this forum a bit and share some of my experiences with everyone. There is so little information on Scleredema and certainly no forums for me to be involved with.

I hope everyone is having a pleasant day and I really love this new forum.

#9 Heidi

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Posted 20 October 2006 - 12:07 PM

Hi!

And, welcome to the message board! I am glad you found us, but sorry it is because of your diagnosis of scleredema. I am not sure if you have seen it, but here is a link to a page we have on the Sclero A to Z web page on diseases similar to scleroderma. Scleredema is listed there:
Diseases Similar to Scleroderma

I hope that you do hang around here and post often! I am sure you will find everyone here very warm, encouraging and supportive...like one big family! So, welcome!

Warm wishes,
Heidi

#10 Jemnibabe

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Posted 25 October 2006 - 11:53 AM

Thanks Heidi, for such a warm welcome. I love this forum and have already gained much information as well as hope and faith from the different posts. I am very interested in finding other people that have had a problem with tight skin, collagen-thickening and hardening, causing a loss of motion. I also have a lot of hair loss, presumably due to the collagen-thickening. Hair loss not only on my head but on my legs and underarms, which I guess could be considered a good thing. LOL Have you discovered any safe treatments to stop the thickening or at least, soften it and slow it down? Thanks for your warm welcome and anyone who can give me any advise or hope for this collagen problem will be much appreciated. Have a good day. Judy

#11 Piper

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Posted 28 October 2006 - 05:47 AM

Hi Krista, I just wanted to chime in here and say that I've had symptoms like you describe for the past 5 years. I was diagnosed with fibromyalgia/cfs 3 years ago and I have new symptoms occuring all the time. I, like Heidi have given up trying to get a diagnosis ( other than fibro) and just concentrate on the symptoms being addressed. I've had a positive ana 1:160 speckled for 5 years now. I also have developed raynauds, Gerd, occasional difficulty swallowing, Ibs, hypertension, very dry eyes & mouth, swollen parotid glands, carpal tunnel, arthritis in hands and sacroiliac joints, alopecia,fatigue & terrible brain fog. I have symptoms of electricity running through my legs and lately a burning feeling. Many of these things come and go which has made me wonder about M.S as well. Lately my palms have become very hard and tight. My Dr. assures me that the S in CREST starts at the tips and works it way up the hand. Now I'm wondering if I haven't inherited duputryen's from my father. It sometimes takes a long time for the pieces of the puzzle to be fit together. Sometimes they never are. We can just treat the symptoms.
I find a great deal of information & support from the members of this site with the symptoms that I share. I hope you have a positive appointment with the rheumatologist and don't forget to record all of your symptoms.
Take care,
Hugs, Piper