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Old 07-02-2016, 09:03 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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Quote:
Originally Posted by en bloc View Post
Have they done the skeletal survey...basically an xray of every large bone? This is standard test for MM and what they did for me since I have MGUS and positive light chains in blood, and therefore at higher risk for multiple myeloma. Of course, there is also the bone marrow biopsy...that is a definitive test for MM.

I think if they thought it was MM they would be doing this tests (bone survey and biopsy ASAP).
I think they want to rule in or out Sjogrens first Enbloc. No I've had little imaging done to date, apart from two chest X-Ray's last year and hands and feet for signs of erosive damage from RA. But I did have pelvic X-Ray done at the rheumatology clinic three weeks ago but I think this just showed wear and tear arthritis in hips and lower back. My ribs are really sore but I think they would have been covered by the chest X-Ray. My knees and shins are the worst for this bone pain but have never been X-rayed. I think and hope you are right that they would have checked. I'm not that confident in doctors though - the NHS is very hard pressed and things can easily just slip by. The new hospital does seem very thorough though.

Most of the time I really don't think I have MM. I don't have the light chains in my pee - they've done two Bence Jones tests this year. My GP thinks I have a rheumatic disease but they just haven't tracked it down yet. I'm crossing everything that my lip biopsy flags up Sjogrens as that would really feel like I'd won the lottery - sad as this may sound. Otherwise I worry that slowly I will be devoured by this numbness. It's as if I have had a local anaesthetic everywhere but in my trunk - or like I'm turning painfully to stone. The pain feels as if it's deep in my bones and nerves - especially in my knees, shins ankles and feet - hands too - and only affects me when I'm resting - otherwise it's felt as loss of sensation. Does this sound familiar to you or anyone else? It's gone on for so long that I almost can't recall it not affecting me now. Maybe for five years. I thought it was RA and so did the neurologist but my new rheumatologist says most unlikely with seronegative RA. My lips and gums and left face feel so like they are half anaesthetised constantly.

One extra thing. My red blood cell count is always a bit above top of range. Do you know if this is significant re the SFN? I googled this but it just says dehydration - however I drink water like a fish!
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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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