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#1 Ninagrrl

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Posted 18 September 2014 - 09:16 PM

I was recently diagnosed with Scleroderma but have had skin darkening and hardening symptoms for almost 10 years (I'm 32). I went to see a dermatologist in the beginning of August and they immediately did a skin biopsy of two of my lesions. 2 weeks later I got the diagnosis of Morphea. I was told that it seems to be only skin related even though I had expressed having GI issues. They gave me a prescription for calcipotriene.

Since then I have done some research and feel like I need to see a different doctor about whether there is more involvement than just skin deep. I have chronic fatigue but also have alternating insomnia and hypersomnia and also diabetes type 2 so it is hard to say what the fatigue comes from. I have had severe joint pain that I associated with possible fibromyalgia since both my mom and sister have been diagnosed. IBS malabsorption, and gastric dumping syndrome (once passed food I ate only 1 hour later at its extreme). I feel like I am only being treated for the skin portion and that I should be seeing someone else about this.

I do not trust doctors easily because I was neglected by my (ex) doctor previously with my diabetes and had a blood glucose level of 540 (which is potentially life threatening, for those who don't know) before they even tested me for diabetes to confirm a diagnosis despite having gone in for several severe symptoms. It is pretty bad when I came to the conclusion before my doctor did... especially since I had been diagnosed with gestational diabetes previously. There is so much more neglect that I endured long before my diabetes diagnosis and the mental and emotional abuse that I dealt with has created severe distrust and anxiety when dealing with most medical professionals.

Anyway, I feel like I should be seeing someone other than just a dermatologist and don't know where to start. I'm currently looking for an internal meds doctor instead of a Family Meds doctor since my health with both conditions (along with social anxiety disorder and seasonal affective disorder) makes me a bit complicated.

I know this post is long winded but it's kind of a rant as well as wanting some advice. Am I right to believe that saying that my scleroderma is likely only skin deep is a bit premature considering my other health issues? What kind of doctors should I be seeking referrals for from the internal meds doctor once I see one?



#2 Joelf

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Posted 21 September 2014 - 04:46 AM

Hi Ninagrrl,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with so many worrying health symptoms, as well as being diagnosed with Morphea, which would be enough to cope with on it's own! UVA1 phototherapy is now the recommended first line treatment for Morphea and I've also included a link to our medical page on Diabetes to give you some more information.

 

We do suggest that our members, if possible, consult a Scleroderma expert as this complex disease does require specialist knowledge and sadly some rheumatologists do lack the expertise to deal with it's many idiosyncrasies.

 

Kind regards,


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#3 Ninagrrl

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Posted 21 September 2014 - 07:05 AM

Right now my dermatologist is treating me with calcipotriene.  but other than helping with the insatiable itchiness, my plaques are currently rapidly spreading. For 10 years I had random spots and unexplained joint pain. The spots were few and new ones only came up when the old ones were on the out. Most of the time I'd have 1 spot for 2 - 3 years and then there would be overlap for a few months. Then during the end of my pregnancy, there were complications and I think the stress triggered it to ramp up. Now I have 3 spots from my wrist to my elbow that range from dime to half dollar size and no whiteness or depression, just the brownish halo, the spot on my shoulder is about 4 x 6 inches and spreading down my arm. This one has white spots but no depression and no pain. The worst one is on my foot and covers about 40% of my foot, is spreading, a large portion is a depressed white area and I'm fairly certain has affected the underlying muscle and bone due to lack of range of motion and some days severe pain that makes it hard to walk.

As far as worrying about systemic scleroderma, I've been reading and from what I understand a simple anti-centromere antibody test can rule out a higher risk for chances of overlap so I figure I'll have that done and just put that worry behind me. I have enough to worry about without adding to it. I have been diagnosed, specifically, with mixed localized scleroderma as I have linear morphea. My plaques are only on my left side. Something clicked and explains the rest of my symptoms. I fear that I have signs of muscle atrophy. I have been dealing with pain in my hamstring for 8 years now (started when I was still active so not due to disuse) that I used to think must have been some injury even though I couldn't recall one. I have also been dealing with lower lumbar pain for as long as I can remember. I went to see a physical therapist about 5 years ago who told me she believed my chronic pain was due to something systematic but could only compare it to her rheumatoid arthritis patients. I was told to correct my posture but never told anyone that doing so was painful. I have also always felt like I was heavy when walking like it takes more effort to walk and do tasks then everyone else. Another thing that I never talked about because I didn't want to be seen as being lazy. Just doing a load of dishes is nearly impossible without feeling physically exhausted beyond what I should be. That being said, I have read studies that suggest that some linear scleroderma patients experience neurogenic muscular atrophy but they are worded very medically so I'm only going by the general defenition of atrophy and not how it may present in scleroderma patients.

I have mixed feelings about atrophy as a possibility. On one hand it is a very disabling thing to go through but on the other hand at least then I would have a reason why I feel so weak and like I feel like a failure for not being able to work or do daily things like housework and caring for my young children. Sometimes I think people think I am lying about the pain I am going through but the only way to describe the feeling is that I feel like I'm old not in my early 30s and falling apart.



#4 Joelf

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Posted 21 September 2014 - 07:56 AM

Hi Ninagrrl,

 

Scleroderma is a very complex disease and also very difficult to diagnose correctly, as it affects everyone differently. I would point out that having a positive blood test for Scleroderma is by no means conclusive, as it is quite possible to have positive antibodies and yet never go on to develop the disease and vice versa, as many of our members can testify. We have a medical page on Localised Scleroderma which I hope will help to answer some of your queries.

 

As I advised in my previous post, it's important to consult a Scleroderma specialist; then perhaps more investigations can be made so that the clinical signs you present can be taken together to get a more complete picture and enable the correct treatment to be given to you.

 

Kind regards,


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#5 Kathy D

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Posted 21 September 2014 - 09:51 AM

I was recently diagnosed with Scleroderma but have had skin darkening and hardening symptoms for almost 10 years (I'm 32). I went to see a dermatologist in the beginning of August and they immediately did a skin biopsy of two of my leisions. 2 weeks later I got the diagnosis of Morphea. I was told that it seems to be only skin related even though I had expressed having GI issues. They gave me a prescription for calcipotriene.

Since then I have done some research and feel like I need to see a different doctor about whether there is more involvement than just skin deep. I have chronic fatigue but also have alternating insomnia and hypersomnia and also diabetes type 2 so it is hard to say what the fatigue comes from. I have had severe joint pain that I associated with possible fibromyalgia since both my mom and sister have been diagnosed. IBS malabsorption, and gastric dumping syndrome (once passed food I ate only 1 hour later at its extreme). I feel like I am only being treated for the skin portion and that I should be seeing someone else about this.

I do not trust doctors easily because I was neglected by my (ex) doctor previously with my diabetes and had a blood glucose level of 540 (which is potentially life threatening, for those who don't know) before they even tested me for diabetes to confirm a diagnosis despite having gone in for several severe symptoms. It is pretty bad when I came to the conclusion before my doctor did... especially since I had been diagnosed with gestational diabetes previously. There is so much more neglect that I endured long before my diabetes diagnosis and the mental and emotional abuse that I dealt with has created severe distrust and anxiety when dealing with most medical professionals.

Anyway, I feel like I should be seeing someone other than just a dermatologist and don't know where to start. I'm currently looking for an internal meds doctor instead of a Family Meds doctor since my health with both conditions (along with social anxiety disorder and seasonal affective disorder) makes me a bit complicated.

I know this post is long winded but it's kind of a rant as well as wanting some advice. Am I right to believe that saying that my scleroderma is likely only skin deep is a bit premature considering my other health issues? What kind of doctors should I be seeking referrals for from the internal meds doctor once I see one?

 

 

Nina, 

 

I understood that an ANA can detect if you have an autoimmune disease.  Find out about that first.  Then if its positive, they will test you for for the multitude of rheumatic diseases and possibly anti centromere and scl-70.  I hope you are negative :)  There are a few women that have Sine afflictions, but I heard that is not common.  Please update us.


Diffuse Scleroderma Diagnosed March 2009

#6 Amanda Thorpe

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Posted 23 September 2014 - 10:40 AM

Hello Nina

 

In 2003 a large study found that 25% of people with localised scleroderma also had at least one symptom outside of skin involvement and less than 4% of the people with morphea had more than two non cutaneous (non skin) symptoms.

 

Symptoms experienced

:

Osteoarticular, affecting bones and joints

Neurological causing epilepsy, headache, peripheral neuropathy

Vascular

Gastrointestinal causing heartburn

Respiratory

Cardiac

Renal

 

As these symptoms can all be caused by systemic scleroderma it's important to point out that the follow up of the study found that no one in it had developed systemic scleroderma. Although it is possible to have both systemic and localised scleroderma, as I do, they are two separate types of the disease.

 

Please bear in mind that any blood test results should only be used to support or rule out a diagnosis, they should not be the basis of either decision. It is possible to have scleroderma and negative blood test results, as I do, and it's also possible to have positive blood test results but no symptoms. Over the years we have had many a visitor in exactly that predicament, an antibody test, somewhat random given the lack of symptoms, has tested positive for scleroderma meanwhile the lack of symptoms continues. As good as that is, the person is left with the constant wonder and accompanying worry, would tomorrow be the day they wake up in bed with scleroderma?

 

Take care.


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#7 Ninagrrl

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Posted 24 September 2014 - 02:36 PM

Multiple autoimmune diseases run in my family. Psoriasis, Crohn's disease, ulcerative colitis, fibromyalgia, rheumatoid arthritis, juvenile arthritis, diabetes and possibly celiacs.

 

On top of all of that, my son has hypotonia (low muscle tone), skeletal dysmorphia (odd shape of the skeletal system), severe global delay (about a year, developmentally), and we are pretty sure he is somewhere on the spectrum. We were told he has a neurogenetic disorder but so far all tests have come back negative for anything.

 

My daughter had complications after she was born, combine that with my sons medical history they did a micro array and discovered she has a micro deletion that is linked with a rare genetic bone disoder called Multiple Hereditary Exostoses which causes abnormal bone growths. Since she is only 9 months she hasn't presented with any symptoms.

 

My mothers side has hormonal infertility and mental disorders like severe onset depression and bipolar disorder and my dad was exposed to agent orange in Vietnam and has psoriasis.

 

I guess it all just worries me that it's gotta be more severe due to winning the horrible genetics lottery. I plan to see a sclero specialist and have everything sorted but it sure doesn't slow me down from worrying about the worst case scenario. I know some of that is normal but I have a horrible family medical history and feel my fear is a bit more than the average.