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Old 02-12-2016, 05:31 PM #22
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
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MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
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Quote:
Originally Posted by Starburst View Post
I have to admit that my knowledge of neuro stuff is incredibly limited, I suspect you know more than me. I only know the basics, mostly about the common diseases that I come across at work; MS and MND.

All I was saying is that AN can be conclusively tested for, so it's something that your neurologist can rule in or out. Also, that there won't be one overall treatment, it is symptom management e.g. laxatives for constipation. It's not like other more complex conditions like SLE where diagnosis can be long and erm, what's the term, subject to change and according to opinion. You know what I mean; in that some rheums say seronegative SLE cannot exist, some disagree.

I hope you find the answers you are looking for with new neurologist.

I come here sometimes for the expertise S - it's amazing how much some people know about the various causes of PN - people like Enbloc , Bluesfan, Kiwi and MrsD. The reason it's much more complicated than you perhaps realise is because AN and constipation can be part of diseases such as SLE or Sjogrens or sometimes diseases such as Parkinson's, Multiple Myeloma or Amyloidosis and MS and MND - to name but a few. There are also the rare types of inflammatory neuropathy such as Guillain Barre - on the news a lot just now and CIDP and AIDS - which also list AN as part of the disease process. If you find the underlying disease that is causing the AN then you might be able to slow down the progress.

I'm not sure how easy AN is to diagnose if it's not affecting the blood pressure orthostatically or the heart..yet? I think you might just be assuming AN is the type associated with OH or Gastroparesis - the type you have? Or part of CNS diseases you have mentioned.

I believe it's possible to do a sweat test and several other nerve related tests but I did ask a neurophysiologist about this and the skin/ sweat test certainly isn't available in Scotland she explained. Small fibre neuropathy and the neurological features of some diseases are still not always recognised or understood in many places. It's only from coming here and from finding a link to an article about Sjogrens with neuro complications written by Enbloc's rheumatologist at John Hopkins, that I started wondering about my constipation and itchy scalp (no dandruff or dry skin).

I'm on high doses of Laxido already but it hasn't returned me to anything like my normal yet - every three days something occurs (!) but this is certainly nothing like my normal. And also I'm troubled at having to live on large quantities of laxatives long term, especially when I'm already eating lots of fibre and drinking lots of water. No abdominal pain, no wind, no diarrhoea - just occasional vomiting after meals and some nausea. Otherwise it's just a case of pooing pebbles most days and feeling very tired, bloated and uncomfortable.

Re grey areas in rheumatology as opposed to AN - my rheum is adamant that there is no such thing as a seronegative connective tissue disease and says this is in accordance with EULAR criteria (and ACR too I believe). This has taken me by surprise and this link below was extra helpful for this reason re seronegative Sjogren's. Mat x
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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

Last edited by MAT52; 02-12-2016 at 11:22 PM.
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