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#1 jnttdvs

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Posted 11 September 2013 - 08:03 AM

Hi everyone,

This is my first post here, so looking for some answers and/or advice. I have been tested for over 10 years now for some type of autoimmune disease. I have never been able to get an answer about exactly what I might have. I have been to a rheumatolgist, but quit going several years ago because it seemed like a waste of time since I wasn't having symptoms of anything, just an abnormal ANA with a range of 1:2560 or higher speckled. Within the past few months though, I have started to feel extremely fatigued and have various other things going on like extreme night sweats, leg and foot cramps, heart running away with itself, lightheaded,  trembling hands, and episodes of diarrhea and constipation that alternate. I had lab work this past week, and the ANA is still positive as usual. The results show positive RNP antibodies 1.0, Sjogren's Anti-SS-B 2.6, and Anti-Centromere B antibodies 1.4. All of these results were higher in some of my past labs. Does anyone out there have similar symptoms, or have any idea what this may sound like? I feel terrible, and the earliest Rheumatologist appt. I can get is in January, and I don't know if I should wait that long. Any advice?



#2 Joelf

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Posted 11 September 2013 - 11:37 AM

Hi Jnttdvs,

 

Welcome to these forums!

 

I'm sorry that you're experiencing some worrying health problems. I'm afraid I have no formal medical training and unfortunately it's extremely difficult to pinpoint the exact cause of your symptoms, as they could relate to any number of illnesses. It is quite possible to have positive antibodies and yet never go on to develop the full blown autoimmune diseases and vice versa, as many of our members can testify.

 

Perhaps it may be possible for you to see your doctor again, with a view to bringing forward your rheumatologist's appointment?

 

Kind regards,


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#3 Shelley Ensz

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Posted 17 September 2013 - 06:17 PM

Hi Jnt,

 

Welcome to Sclero Forums!  I'm sorry that you have possible concerns about autoimmune disease(s) and send my best wishes to you.

 

Please keep in mind that I have no medical training and verify everything with a reliable medical source.  Did your doctor also check you for the basics, like dehydration, thyroid disturbances, hypoglycemia, panic attack, menopause, medication side effects, infection, heat exhaustion, or mineral imbalances, etc.?  One thing to look at is causes of night sweats, and go over that list of possibilities with your primary care doctor.  To the best of my knowledge, neither scleroderma nor Sjogren's cause night sweats, so that should be a clue to investigate.

 

Now, you will certainly find people with scleroderma and probably even Sjogren's who have gotten night sweats. I certainly have! But for me they have been caused by other underlying disorders, and my doctors would never write them off to just autoimmune disease(s).  See another thread on our forums about night sweats.

 

Even with scleroderma or Sjogren's, these would not be typical symptoms nor anything that would "count" towards a diagnosis.  So, let's say you were already diagnosed with scleroderma or Sjogren's, these symptoms would very likely be adding up to something else. If it were me, I'd ask my primary doctor to ignore the fancy antibody stuff and see what else is going on, which could and probably should be treated right now -- and most certainly not sit on all those perplexing symptoms until January!  I'd just be beside myself if I were as sick as that and had to wait that long.

 

If it were me, the very first thing I would do is go over all of my medications with a fine tooth comb.  That might turn up a culprit medication for some of your symptoms, and help narrow the playing field for your doctor.

 

In any event, we aren't doctors, of course, so we are very interested in hearing what you find out about each of the symptoms, or the overall combination, and how you are faring along the way. It's bothersome to be concerned about potential autoimmune diseases, and no way for us to tell whether what you are experiencing now is related to them, or not.  So I am sending some extra warm hugs your way!

 

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Warm Hugs,

Shelley Ensz
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#4 Amanda Thorpe

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Posted 18 September 2013 - 09:02 AM

Hello Jnttdvs

 

Have a look at our videos about symptoms of scleroderma, diagnosis of scleroderma and difficult diagnosis of scleroderma. What's most important when it comes to achieving a scleroderma diagnosis is a combination of clinical examination, symptoms and medical history, any test results would be used to support the results of this.

 

As already said night sweats is not a scleroderma symptom and having positive blood work is not sufficient in itself to merit a scleroderma diagnosis. It is very frustrating to have a collection of symptoms and not know the cause, a cause which could be serious or not, most of us here know this all too well and unfortunately for most of us here the cause turned out to be serious, I hope this is not the case for you.

 

Take care.


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#5 Kathy D

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Posted 30 September 2013 - 09:16 PM

Hi everyone,

This is my first post here, so looking for some answers and/or advice. I have been tested for over 10 years now for some type of autoimmune disease. I have never been able to get an answer about exactly what I might have. I have been to a rheumatolgist, but quit going several years ago because it seemed like a waste of time since I wasn't having symptoms of anything, just an abnormal ANA with a range of 1:2560 or higher speckled. Within the past few months though, I have started to feel extremely fatigued and have various other things going on like extreme night sweats, leg and foot cramps, heart running away with itself, lightheaded,  trembling hands, and episodes of diarrhea and constipation that alternate. I had lab work this past week, and the ANA is still positive as usual. The results show positive RNP antibodies 1.0, Sjogren's Anti-SS-B 2.6, and Anti-Centromere B antibodies 1.4. All of these results were higher in some of my past labs. Does anyone out there have similar symptoms, or have any idea what this may sound like? I feel terrible, and the earliest Rheumatologist appt. I can get is in January, and I don't know if I should wait that long. Any advice?

 

 

I had MANY similar symptoms, this years after being diagnosed with scleroderma.  The cause was my thyroid went hyper.  Ask for a thyroid panel from your doctor to rule it out.  The fatigue, racing heart, trembling and diarrhea are too similar to my hyperthyroid symptoms.  Simple blood test will tell.  Good luck to you,

 

Kathy


Diffuse Scleroderma Diagnosed March 2009

#6 Shelley Ensz

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Posted 06 October 2013 - 05:48 PM

Hi Jnt,

 

Have you made any progress yet with your primary care doctor?  I hope that you are hanging in there okay. We are all thinking of you!

 

:emoticons-group-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.