Quote:
Originally Posted by en bloc
You have mentioned the fear of it coming back negative before. This isn't a bad thing if it does. I don't think they will dismiss anything...I think they will just confirm that your spine is the problem, not SFN. You really need to know which it is. If biopsy is positive, it is both. If negative, it's just the spine...how is that bad? Frankly, that tells you how bad the cervical spine really is. Hanging on to the 'presumed' SFN with no confirmation at all, is only adding to the problem of no answers. If it IS the cervical spine, instead of SFN, then something at least may be done to fix it. They never looked beyond the 'presumption'...so they could have dealt with this a couple years ago had someone not presumed anything and stuck with facts and proof of a proper biopsy.
I bet you have both...at the very least, damage to the nerves...even if density is within normal range. But I doubt it is...and I think yours is non-length dependent (which requires at least 2 sites to confirm).
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As always, Anita, you’ve galvanised me. My wonderful GP thinks along similar lines, although she is careful not to let on how badly she thinks neurology is letting me down. But she was the one who referred me for a second opinion and thought it “extremely rude” that I have never received a response from the other neurologist from my very eloquent letter of complaint. I have previously told her that I’m not happy with the SFN being presumed rather than diagnosed by skin biopsy.
This time she studied the two MRI reports and says she really doesn’t think these correlate much with my bilateral SFN symptoms. She says they could well be making me feel that these are progressing when in fact the spinal issues are just adding a bit to my existing SFN. She explained that there’s no nerve entrapment yet. Although it could well degenerate to nerve entrapment soon.
Equally she thinks the awful groin and genital pain is actually the SFN progressing rather than any form of cystitis - and thinks the blood in my pee is unrelated although it could be that the SFN (I suspect she’s thinking of pudendal Neuralgia which symptoms correspond more with my pain than Interstitial Cystitis) is likely. She’s therefore very firmly asked me to start Pregabalin (Lyrica), building slowly up to a high dose, to see if it helps. If it does then it’s highly likely to be neurological rather than infection/ cystitis related.
Other thing - she is very annoyed that I’m only down to see a neuro registrar. So she says I must insist on seeing a consultant (a fully qualified neurologist) and say I won’t leave until I do. Second opinions have to be undertaken by soneoneone if equivalent rank apparently and she fears it could take a three - six month wait to see a neurologist if I don’t see one in a month.
Now got to drive the length of my county to see a neuroPT for first time. I’m feeling rather anxious about this too as my bowels are taking turns to be very sluggish or very overactive. And I get barely any wanting either way so nosy mornings I stay near toilet at all times to avoid mishaps. I think chronic constipation and the SFN/ Pudendal Neuralgia are very much linked for me. I’m on maximum dose of Linacloctide and this helps but I have to be very careful about what and when I eat!