Quote:
Originally Posted by en bloc
Mat,
It is SO hard to find the cause of neuropathy in some cases. They could literally run tests weekly for a couple years and not be finished checking every possibility. You have to have someone that is committed to helping you, and that, my friend, is hard to come by in today's world. They are so overworked, they just don't have the time to give that sort of attention to every patient. They do what they can in the limited amount of time they are given. It's NOT the way it should be...but it's just the way it is.
I had forgotten about a previous thread of yours that I meant to follow-up...until just now seeing this thread. We were talking about vascular issues, if you remember. I really think this should be given some attention. There are several vascular conditions that can cause (directly or indirectly) neuropathy. Vasculitis for one, and there is another autoimmune condition that comes to mind based upon your 'neurological events' that have taken place. This is APS (antiphospholipid syndrome). Have you ever been tested for this? It's just a matter of a few blood tests (nothing costly or rare). The main one is aCl (anticardiolipin). Other tests are Lupus anticoagulant and Beta-2 Glyco-protein 1 antibody (B2GP1). APS is a clotting disorder and I believe you have mentioned some odd 'neurological events' that may have been some sort of TIA for clotting event. APS is tied to several vascular issues that cause neuropathy. So I think it's worth looking into. But back to the vasculitis itself...has anyone looked into this as well?
I have profound proprioception issues, and I can tell you that typical neuropathy medications will NOT help proprioception. Those drugs are designed to alleviate the pain and some will help with the tingling/buzzing/etc...but that is about it. And they DON'T cure the problem...just help make the patient have a better quality of life. Masking the pain may not seem like the thing to do, but when a cause cannot be found, one must consider every option to at least increase their function and meds that give them some manageability to their life.
|
My new rheumatologist suggested APS at my first consultation and we were both quite excited that at last something might emerge which fitted perfectly - I even get livido on my legs he observed. But all three blood tests have drawn a blank. Same with Vasculitis - ANCA negative and also Cryoglobulins normal. I did have photos of what he considered to be a vasculitic rash but I think it was just a follicular rash as yet another drug allergy. I'm increasingly convinced I have a neurological type of seronegative Sjogren's having doctor googled my symptoms along with paired Oligloclonal bands. But finding a doctor who will recognise this won't be easy because it's not a very well understood disease here. I'm sure you will have read this page but just in case it's useful to others;
http://www.hopkinssjogrens.org/disea...complications/
Thanks as usual Enbloc for your help. Funnily enough steroids really helped almost straight away with the dizziness more than any other symptom. The oral surgeon felt this was very significant. The dizziness vanished after six months on steroids and only recently returned. The steroids didn't help the neuropathy much although I would flare up each time I dropped a dose. This makes me wonder if the cause is proprioception or perhaps some kind of autoimmune vestibular problem or something MS like?
02-11-2016, 12:00 AM
Reply With Quote
Similar Threads
Threaded Mode