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#1 Terente

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Posted 20 July 2009 - 05:36 AM

Hi to everyone,

I have been reading this forum for 4 months now, and finally created an account. Here is my short story and the question I have for anybody who can help.

I'm a 38 years old male. I got chickenpox in December last year and then everything broke loose. After chickenpox was over I start to feel some goosebumps all over my body. Then a little sunburn sensation on my back and hands. Then I got mono in March! Along with mono axillary inflamed nodes came in but no throat involvement at all.

Now in March I went to dermatologist for my skin issue, not a big deal but kept bothering me.So he ordered blood work telling me that I have dermographism most likely. Blood test came back with positive ANA 1:80 nucleollar pattern. Right that day my mono started so I went to infectionist, mono diagnosed nobody cared about my ANA. Late April my mono seemed to settle a little and weird stuff starts to happen. Some weird inner tremor, muscle hurting mild here and there, some type of brain dizziness. I dont know how to describe it. Went back to dermatologist to follow up,he ordered complete ENA test and muscle type tests CK,CPK..etc. All came back negative. ENA complete negative (scl 70,jo-1 etc).

My palms are burning,my skin seems to me at least starts to change. Doctor does not agree, looked over and said
I probably have some fibromyalgia and some peripheral neuropathy left after those 2 viruses. My nodes under arm I can still feel them, my skin seems to burn mild on my back face sometimes on legs, and upper palms.

Still got that I don't know how to describe it dizziness,some mild pain on my left side under ribs. I feel like I,m being misdiagnosed here and I ask: is it possible with all those tests done to have sclero? I feel that ANA was mislooked and my symptoms are real. What are test should I require?

Thank you!

#2 Amanda Thorpe

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Posted 20 July 2009 - 08:57 AM

Hello Terente

Welcome to the forum. You've obviously had a lot going on of late and are understandably looking for an answer to your symptoms. Bear in mind I am not medicaly trained but it's my understanding that a diagnosis of scleroderma is best reached as a result of bloodwork, test results and symptoms rather than on just one factor such as bloodwork. Have a look at our page on autoantibodies.

It may be an idea to go back to your doctor to specifically ask what the relevance is to you personally of a positive ANA and to ask any other questions you may have about your symptoms. It's natural to want answers to these questions.

Please let us know how you get on and take care.
Amanda Thorpe
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#3 Terente

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Posted 20 July 2009 - 09:44 AM

Amanda thank you for your answer! The only specialist I've seen so far was the dermatologist. I have asked him why my ANA would be positive and after the whole set of bloodwork results came in, he said that 20% of population carry a positive ANA for no reason, and the titer is small. Also he said to stay away from sun (?).

As I understand a rheumatologist would be the one qualified to diagnose sclero, a dermatologist should at least see some stuff on the skin. The reason I'm 2% in doubt that it might not be sclero (98% I'm sure) is the fact that I've never had any Raynaud's as of yet and no other symptoms before chickenpox came into picture, as of muscle pain, joints, skin or other. And looks like 5 months from onset to where I am now is somehow too short, but as I know scleroderma affects individuals differently I would not be surprised. Anybody has deltoids muscle stiff and neurological involvement?
So I guess I should demand full tests based on symptoms, even if bloodwork does not show much.

I will update.

#4 Shelley Ensz

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Posted 20 July 2009 - 11:43 AM

Dear Terente,

I'd like to give you a warm hug to welcome you to Sclero Forums. I'm sorry you've been so sick and that you are in search of answers. I know it is certainly puzzling.

Please keep in mind that I'm not a doctor; in fact, I have no medical training at all. However, I have perused the first aid kits at our local drugstore and I did read an incredibly boring medical magazine, pages 20-25 while waiting for my last doctor's visit. :blink:

I may be wrong (I often am!) but it sounds to me like you are experiencing some sort of neuropathy. Sometimes people suffer from that as a post-inflammatory reaction, although there can be many causes. I would strongly suggest that you see your primary care doctor about this (preferably an Internist) and ask for a referral to a neurologist.

There are treatments for neuropathy that might ease your pain (the burning sensations). I think this is way too early in the game to focus in on any single diagnosis, including scleroderma. The reason I say that is because this would be a very unusual start for scleroderma but perhaps much more typical of neuropathies.

The neurologist can help determine whether the underyling cause of this is benign (maybe just the virus still working its way out) or something more serious like diabetes or multiple sclerosis.

I don't say that to alarm or upset you, but just to point out that there is a wide variance between causes of neuropathy that are relatively harmless or that will clear up on their own, given enough time, and those that are serious and sometimes even life-threatening.

So, bear with us, will you? I think I see a neurological exam in your future. Will you at least read up on it, and see if it is worth your while to explore that idea?
Warm Hugs,

Shelley Ensz
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#5 Jeannie McClelland

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Posted 21 July 2009 - 03:07 AM

Hi Terente,

I'd also like to welcome you to the Forum! I'd give you a big hug, but it sounds like you are too sore to want one.

I'm not a doctor either and most of my medical education has come from those pamphlets they hand out in the doctor's offices~ :huh:

However, a thought did occur to me that might explain some of your symptoms. Has anyone suggested what you might have is postherpetic neuralgia? It's caused by the virus that causes chickenpox. I've given you a link to one of our trusted sites, the Mayo Clinic, that explains more about it. It's usually considered to be a complication of shingles, which happens after you've had chickenpox the first time, but sometimes either the initial chickenpox or the shingles is so mild, the person doesn't realize they've had it.

I hope you soon get some answers and more importantly, some relief from the pain and soreness. I'm going to give you that hug anyhow - it's a mother thing to do! (Makes me feel better, anyhow! ;) )

Best wishes,
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#6 debonair susie

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Posted 21 July 2009 - 12:16 PM

Terente, my heart goes out to you, as all you have described sounds miserable trying to cope with the pain.

Both Shelley and Jeannie have provided some great support and information, given your symptoms.

I also thought about postherpetic neuralgia, the more I read your thread! To me, it would be a flag, particularly after the chickenpox.

I hope you are able to get treatment so you can begin to feel better.

Please keep us posted?
Special Hugs,

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#7 Peggy

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Posted 21 July 2009 - 02:47 PM

I just thought I'd share with you that my first health problem that started was peripheral neuropathy of my hands and feet. They first tingled like they kept falling asleep. Then from that it progressed to where they went numb. After a year of going from doctor to doctor I finally got in front of a neurologist whose specialty was peripheral neuropathy. By the time I saw him I also had muscle pain that started as jabs of shooting pain that would hit me at random areas of my legs and arms and weird intervals and then went to constant muscle pain. He diagnosed the neuropathy and determined that it had damaged my muscles permanently up to my knees and so far it hasn't progressed past that. He wasn't happy with other things that were going on so he had me see a colleague at the clinic who was a rheumatologist to "put the puzzle pieces together" and she was the one who diagnosed the Raynaud's, Diffuse Systemic Scleroderma, Polymyositis, and Sjogren's.

So I for one would highly recommend that you get in front of a neurologist whose specialty is peripheral neuropathy and also in front of a rheumatologist who knows Scleroderma. Not all rheumatologist's know what sclero is and how it can be different from patient to patient. There are a great number of people that I have seen post on different boards who haven't had the positive blood work but have had other tests that came back positive for this disease.

I wish you good luck and do not give up until you are satisfied with what's going on with you medically. I had so many doctors who didn't take me seriously at all and I knew there was something wrong and thank heavens followed my inner voice and kept on until I got the answers. Granted they aren't the best answers in what I finally found I have but at least now I know what I'm up against and I can try and fight what it's doing to me.

Warm hugs,

Peggy