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Old 07-05-2015, 02:28 AM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
Question

Quote:
Originally Posted by en bloc View Post
One would think with all your negative tests, that SFN would be excluded...but I DON'T think this is always the case. One of the things often not looked at during biopsy is the morphology, condition of the fibers. Just because you have normal fiber density, doesn't mean that the fibers them selves are in good condition and damage fibers can (and will) cause symptoms of SFN. Sadly, many pathologists don't check the condition of fibers, especially once they see density is normal. My first biopsy at Johns Hopkins showed exactly this...normal density yet segmented, tortuous, and swollen fibers, along with very patchy distribution. A year later another biopsy was done and the condition was worse. Let me also add that your symptoms are relatively new and therefore, you may not have noticeable findings (in regards to density) at this early stage. Did they give you the percentile of density? This is important as you may be on the low end (yet still in normal range) which would explain your symptoms at early stage.m

So other then finding a pathologist to review your samples (which are typically saved/preserved) and assess the condition, I think you might also consider an MRI of the spine (thoracic and lumbar). Compression issues are a very common cause of neuropathy and it doesn't appear you have had this ruled out yet in the most common area that it occurs.

As for the face, is it possible you have candida? You have had numerous antibiotics, if I remember correctly (from the pneumonia) and candida is a very common cause of your facial symptoms, even on the tongue.

Otherwise, I still think the SVID could possibly be causing your facial symptoms...especially since I have experienced it myself and know those very findings on your MRI (just like mine) can cause those same symptoms. Those small nerve fibers in the face are greatly effected by those tiny vessels being ischemic...and you don't have to have lesions. At least it shouldn't be ruled out as the cause. of course, it could be an extension of the neuropathy, but I think it would be a bit more odd to see this much progression to the face when you don't even have positive findings on biopsy anywhere else (yet---but that may change in time). A consult with a vascular doctor would be helpful in regards to your facial issues.

Go slow on the Prednisone taper...it is not going to be fun coming off it and can take some time. Patience and going at your own pace is best.
Definitely not candida Enbloc. Nothing oral wrong at all in fact I'm told apart from a class 2 oblation which would only account for a bit of mild TMJ - and this is from three dentists, an oral surgeon and my GP - who all looked for oral thrush straight away as the most obvious candidate. It's all phantom trouble as it were and goes up into my nose, left cheek and eye. It feels tight and swollen but really isn't to the naked eye at all.

I'm not that confident in the skin biopsy results but will get them printed off as you suggest because I've only been told by go and neuro that they were fine - don't have the break down I can study or investigate. Good idea to get it printed off though you are right. My lack of confidence is mainly because my GP conducted it himself to save money and the hassle of flights when I was pretty unwell and also to notch up points for his professional practice of course. So he took both samples from my calves but I thought this was odd because surely he should have taken two on each leg to measure length dependency? Also I don't know quite where the results then went or who analysed these samples. The neurologist did say that something in the results had shown up that could mean either infection or autoimmunity. I thought at the time he explained this that he was referring to my blood results - but looking at these I think it must have been the skin biopsy actually. I'm not sure that he would otherwise have said he wanted to speak to my rheumatologist about me.

The area we are set to move to in mid October has a multidisciplinary approach to both rheumatology and neurology and a nearby large hospital they can refer patients to for rare diseases such as Scleroderma and some types of Vasculitis. My rheumatologist has mentioned Scleroderma as an often slowly evolving connective tissue disease which might possibly explain my SFN symptoms and many others such as tight mouth and circulation problems.

There is no real evidence of this yet but he said it's very difficult to diagnose in the early stages and with my signs and symptoms to date, including a large irregular cyst on one kidney - he would advise my new team to watch for this particular disease in my case.

I don't think lumbar/ spinal compression would account for the very diffuse nature of my parasthesia - at least that's what the neurologist told me. I do have arthritis in my neck and my physio and the doctor conducting my disastrous lumbar puncture back in January have both confirmed that I have wear and tear arthritis in my L4 and L5. But not severe enough to cause the problems I'm having in my peripheries they felt - as hands wouldn't be affected in this way. I think they all feel it's systemic rather than mechanical with me. I would like to have an MRI of my pituitary gland, my thyroid and also of my lower back but MRIs are terribly expensive and I can't afford to pay for these myself - and NHS won't offer them unless they feel there is sufficient reason. So there's air of guesswork going on in my case I feel!

I'm not sure that this is all that new really. My parasthesia symptoms started before the RA about six years ago but I dismissed it as probably menopausal stuff - hear surges in my wrists and repetive strain type pain in one arm. The burning soles started with the bilateral joint pain and flared with the polyarthritis so I assumed all were part of the RA for ages. Then the RA symptoms died away as methotrexate kicked in but when I had to come off tgis for intolerance reasons the pins and needles became my main symptom and this was three years ago now. They have never gone and have progressed to burning pain and icy cold sensations and a feeling as though I've wet myself often - so right up into my groin and shoulders and now my face. No real joint pain for a long time now - maybe 18 months. Is this still counted as a new-ish symptom?

The Prednisolone helps only with the pain, throbbing and dizziness - it doesn't calm the parasthesia/ icy toes, wet numb feeling in my legs during the days or the pins and needles in my face. Although I guess it could all be relative and worsen significantly as I taper off.

Thanks for your help anyway. Perhaps the anaesthetist will be able to tell me more when my heart and oxygen levels have been monitored closely while I'm under general anaesthetic on Tuesday for my gallbladder surgery? They do know about my rogue version of RA with SFN and the anaesthetist did seem curious.

Or maybe even the removal (and analisys of tissue) of my gallbladder might reveal something useful - or all my symptoms miraculously depart with this long defunct little organ and its inhabitants? Here's hoping but not expecting! Thanks for explaining more about the small nerve fibers - I will report back when I get the print outs of skin biopsy anyhow. Mat
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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