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Old 06-16-2016, 06:09 PM #1
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
Default Rheumatology appointment - mast cell disorders or Multiple Myeloma

I'm back to update and say hello. Things have progressed a little for me because I'm under one large teaching hospital for everything now. I had an appointment with my new rheumatologist on Tuesday - only it was actually with one of his juniors. This didn't matter as he was thorough and perfectly polite. We started from scratch and I felt he was getting ready to give up on me when the arthritis line of questioning was getting nowhere and my examination was wholly normal.

However he got as far as asking me if I had any pins and needles and I laughed drily and told him I certainly do and have done for four years or so. He asked where and I said almost everywhere except my trunk. Thankfully he couldn't find my old neurologist's letters which start off diagnosing a clinicical SFN and then, latterly say that at least part of this is "functional" in his view.

So I told him about the paired ologloclonal bands in spinal fluid and fluctuating inflammation levels in my blood and then he really sat up a bit. He said he felt I didn't have Sjogrens, Scleroderma, active RA or Lupus. He felt my RA might have been post viral arthritis. But all of these would apparently have progressed over five years whereas mine is apparently much the same as it was a year ago. Unless the nerves have died off so pain has been replaced by numbness? So I asked him what could be causing the fluctuating inflammatory markers and paired o bands. He is repeating my Bence Jones early morning urine test next week and took loads of bloods - thinks Vasculitis is a possibility still as it can be very hard to diagnose.

I asked him about possible mast cell disorders, bearing in mind my very long history of allergies and my mum's anaphylactic response to bee act wasp stings. I've never yet been stung but not keen to experiment just for a diagnosis either! He said this would come under immunology and haematology - I think he might refer me on to them which I would be ready pleased about.

Meanwhile I'm struggling a bit with my Hashimoto's hypothyroidism because of doctors treating my blood rather than treating my symptoms. I'm having a colonoscopy in ten days because of chronic constipation and rectal bleeding. I've been put on HRT pessaries for serious trouble below and I feel really sore and bloated. I had an ultrasound which showed womb lining to be fine but ovaries obscured by gas. So I asked for a blood test to exclude ovarian cancer. I've also organised a private test next week for Coeliacs Disease - having stuck to the gluten challenge for three months. Can't wait to dump gluten again in the hope that I become less bloated and tender again, Coeliacs or not. I'm fairly sure nothing will show up in any tests but the rheumatologist will see me in two months time with all test results, including a pelvic X-ray.

I do feel a bit doomed still but really hoping that this new hospital will get to the bottom of my SFN and I won't be in the shadowlands for too much longer.
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If you get lemons, make lemonade

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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glenntaj (06-17-2016), ShaggyChic_1201 (06-29-2016)
 

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