Quote:
Originally Posted by en bloc
Mat,
There are several posters that report pain subsiding and numbness taking over. I agree with Glenn, that it can be a sign of severe damage or dying of the nerves. This needs to be reported to your neurologist at the end of the month and a new skin biopsy taken or follow-up NCS. If there nerves are this damaged, then something would show on biopsy.
I think it's times for a full autonomic battery to be done including tilt table, echo, holter, 24 hour BP, QSART, etc. They need to get to the bottom of this for you.
|
Sorry for delay responding - I never receivec e-notifications for these comments. I agree with all you say and hope that the new neurologist in new hospital will undertake further tests now that the pain has gone but been replaced by a degree of numbness. I don't think the dizziness is caused by proprioception issues entirely - because I had it many years ago and as you know my last skin biopsies taken by my GP in April last year came back negative.
The dizziness has affected me for two years now apart from when I took steroids and it disapeared within a day. This makes me think it's an inner ear/ vestibular problem. Both my sisters are profoundly deaf from birth and one of them gets something similar when certain frequencies are being played in music. Also both sisters have hypertension and my dad had severe peripheral neuropathy, hypertension, often fainted and always carried a walking stick. He also had Atherosclosis as did my mum (Atherosclosis killed both of them, both aged 73 and both suddenly). I too have mildly diseased carotid arteries and am wondering if all this is more urgent than the doctors realise for me. My dad had a massive silent heart attack when he was only a little older than me - he and my grandad (also died of heart attack at my age) were both diabetic so it's all in the genes I suppose.
On the very plus side I saw a new GP yesterday in our new health board area. She was really good and she's referring me to rheumatology at the new hospital. I explained about the other doctor saying my problems were psychological/ functional. Unprompted by me she said that functional disorders aren't usually characterised by high inflammatory markers or paired oligloclonal bands. She wanted to know what my rheumatologist says about me still having these when my RA has gone away.
I gave her a copy of my letter of formal complaint so it can sit with the relevant notes re psychological functional - also showing that this doctor ignored the fact that I was there to speak about my tummy issues and ongoing constipation and marked stool changes.
Also I have found that my immunoglobulin A has been raised both times it has been tested but I'm not sure yet if this means anything or why my doctors have said that all my immunlogy panels were negative. They are only slightly raised but I feel this may be significant nonetheless? Research research!!