Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Multiple Autoimmune Disease(MAS)


  • Please log in to reply
5 replies to this topic

#1 SuzanneL

SuzanneL

    Newbie

  • Members
  • Pip
  • 8 posts

Posted 24 August 2010 - 04:51 AM

Hi all,

First thank you so much for all your replies to my concern and fear of having gotten a surprise SCL-70 positive test (surprised because my doctor and I were not looking for it at all!). I have scheduled a second opinion appointment at Johns Hopkins with Dr. Hummers there - very excited for that - and I just had an echocardiogram yesterday - my rheumatologist wanted it as a baseline since I tested twice positive for SCL-70. He expects it to be normal, that is my hope, too.

A topic I just heard of/learned about that intrigued me...Multiple Autoimmune Disease(MAS)? Is this a frequent occurrence?

I wonder because here is where I am at: have had Vitiligo since I am 10 years old - I am now 45. As you have read, I just tested low positive for SCL-70, and also had a high Thyroid antibody count this test as well (high Thyroid Peroxidase antibody, but normal TSH). I have no symptoms of Scleroderma or Thyroid Disease at all - no Raynaud's , no skin issues, no fatigue, no weight loss or gain, etc.. I actually feel really good and the tests were a shock as I have mentioned. The rheumatologist actually said it was the last thing he was even looking for.

Right now, my rheumatologist feels it is a fluke that I tested positive for SCL-70. I mentioned the echo has been done, and my lungs are clear (had a CT scan in June right before I saw the rheumatologist for something else, and they were clear).

But I see from googling MAS - certain conditions may run in partnership...and one thing I saw is there is usually a dermatologic autoimmune disease like vitiligo as usually the first condition diagnosed, and then there seem to be others that go along together. There are different categories - MAS 1, MAS 2, MAS 3 - where by appearances certain autoimmune diseases keep company with others.

I am curious if your rheumatologist has discussed MAS with you? And I know I am splitting hairs here - but is it a tendency or a coincidence that these occur together, or is having one mean you are more likely to have another? And if you do have one and get another - do they tend to be mild in form or more aggressive? My vitiligo I think is pretty mild considering that I have seen others completely de-pigment. Mine has - in 35 years time - taken over my hands and is on my feet and face, but has not taken over entire limbs, etc., as I have seen on others.

I just wonder (and know there are no crystal balls), but my rheumatologist feels the SCL-70 will come to nothing - that is my hope, too. But then lumping in my vitiligo with the positive thyroid antibody into the equation- makes me scared the SCL-70 does mean something here (then again, my rheumatologist knows I have these things, too.)

#2 kipcakes

kipcakes

    Newbie

  • Members
  • Pip
  • 9 posts
  • Location:hew jersey

Posted 25 August 2010 - 02:43 AM

HI Suzanne, I know nothing about multiple autoimmune syndrome (MAS), however I am diagnosed with mixed connective tissue disease (MCTD) which is otherwise known as an overlap disease. Basically a combination of scleroderma, lupus and polymyositis.

You may want to check the symptoms of each of those to see if better fit for you. Good luck with your testing and hopefully your doctor is correct.

#3 Sandy B

Sandy B

    Silver Member

  • Members
  • PipPipPipPip
  • 113 posts
  • Location:Abingdon, Oxfordshire, UK

Posted 25 August 2010 - 02:55 AM

Hi Suzanne,

Like you, I am wondering if my symptoms come under multiple autoimmune syndrome (M.A.S.), as I have Limited Scleroderma, Raynauds, had Graves disease in my twenties but now have hypothyroidism, pernicious anemia and most recently diagnosed with left adrenal hyperplasia, along with GERD, S.I.B.O. and gastro intestinal problems, skin thickening and scarring on the lungs, not to mention weight loss and fatigue. (I sound like a walking disaster, but I am still walking and working and living!!!) Also had a spell in my mid twenties of having optic neuritis and uveitis which doctors thought may have been caused by sarcoidosis but all tests came back negative at the time. As yet I have not been labelled as having M.A.S, but it is my understanding if you have three different autoimmune diseases then it is classified as M.A.S (but I am not a doctor and I do not have any medical background.) I am due to see my general practitioner in a couple of weeks regarding the hyperplasia, so if I remember, I will ask him about it.

It must be very difficult for you to have a positive SCL-70 result. You have obviously done a bit of research and must now feel like you are sitting on a ticking time bomb, but it may never happen. Make the most of and enjoy your good health, what will be will be, I don't think there is anything you can do to change the course of your future as regards to scleroderma, but know if your health issues do change, there is always somebody here to lend an ear or offer helpful and friendly advice, you will never be alone with it and there is life despite scleroderma. In case you are wondering, I have never tested positive for SCL-70 so as you can see there are no hard and fast rules with scleroderma.

Take care and all the best

Sandy B

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 25 August 2010 - 04:19 AM

Hi Suzanne

Sorry to read that you've been so worried over the positive SCL-70 result. Perhaps your rheumatologist will be right and it may not come to anything.

I have Systemic Limited Sclero but did not have a positive SCL-70; I did, however, have positive Anti-Pm/Scl antibodies but thankfully so far I don't appear to have any of the wasting muscle symptoms of Polymyositis. :VeryHappy:

Although I love to tell my long suffering doctor her job :rolleyes: I don't actually have any medical training. However I think, as the others have said, that it doesn't always follow that you'll get full blown Sclero and hopefully you'll still be able to have a very good quality of life. :)

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#5 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 25 August 2010 - 11:54 AM

Hi Suzanne,

I was interested to see your post. I hadn't logged onto the forum in ages, and it appeared at the top of the page as if I was meant to see it.

I have multiple autoimmune syndrome (MAS3), as my immune system has been attacking bits of me all my life, and only since my latest diagnosis of systemic sclero, I have been put on the correct immune suppressant drugs.

I have type 1 diabetes since I was 4, (in 1965) and autoimmune hypothyroid since age 11. Also diagnosed with sarcoidosis in 1996, autoimmune hepatitis in 2000, systemic Lupus in 2003, and now scleroderma. It seems my immune system has gone into meltdown, as I also have the usual accompaniments to sclero of Raynauds, Sjogren's, skin and gastro problems.

My doctors just say Ive been unlucky, and they don't know why I have so many overlapping conditions. One doctor used the term of Multiple Autoimmune Syndrome 3, but I don't care what they want to call it, another name doesn't change how I am.

Although the diseases are now under control, as each one has arrived, I have been quite unwell, but now reasonably settled unless I have flare-ups. And I hope I don't have more than one condition flare up at a time, then I can cope. I lead a very full and active life.

Good luck with your results.

#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 25 August 2010 - 02:24 PM

Hi Suzanne,

I have multiple autoimmune syndrome (MAS) (plus) and for those who aren't aware of it, MAS is similar to but different than mixed connective tissue disease (MCTD). To quote from those pages on our sclero.org site:

Multiple Autoimmune Syndrome (MAS) is the coexistence of three or more autoimmune diseases. At least one of them is usually a skin disease, such as psoriasis or scleroderma.

Then sometimes MAS is broken down into 3 different subcategories, and typically, scleroderma is in category #2.

There is another similar grouping of ailments called polyglandular autoimmune syndrome (PAS), and in some reckonings PAS2 symptoms are basically listed as MAS3. I have what is usually categorized as MAS2; my mother had PAS2 (or, in other words, quite similar to MAS3) and more severely than me (or is it I? grammar fails me on that score.)

Mixed Connective Tissue Disease is an overlap of clinical features of systemic lupus ertythematosus, systemic sclerosis, and polymyositis, along with very high ribonucleoprotein autoantibodies, but without antibodies for other specific autoimmune diseases.

As I understand it, and keep in mind I have no medical training at all, and this is just "in general" info, typically the more autoimmune diseases a person has, the less severe each manifestation of it is and the better the long term outlook. Well, in terms of longevity, that is. I must say, having more than a few autoimmune diseases poses a lot of necessity for symptom managing and juggling, for whenever one thing settles down, another tends to pop up, and sometimes they all decide to raise havoc at once. Not only that, but the more autoimmune diseases a person has, the greater the risk for developing yet another one, so developing a very hardy and flexible attitude is essential.

I found that it helped me enormously once the MAS designation was established. Then, as various doctors tossed out even more diagnostic possibilities, I found that I was no longer thrown for a loop. There's a certain way that our illness(es) tie in with our self-image and it is disconcerting, for those with multiple diseases, to have the label changed frequently. So now I'm very comfortable that no matter what is added or subtracted in defining or grouping my ailments, over time, that my primary diagnosis (MAS) will remain stable.

Okay, call me a silly goose, but it's a lame form of stability that I find comforting, when everything is always subjected to a state of so much flux (for better or for worse). And it is pleasant to hold fast to the idea that "more is better" in the field of autoimmune diseases, in that more quite often means a bit milder overall, with a bit rosier prognosis, overall.
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.