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Originally Posted by Liftyourhands7
Hi everyone...
On Dec. 26th I have an appointment to see a new neurologist, I am hoping he will take a fresh new look at my case, this full body SFN is really severe and now I am having problems with a dry and burning mouth.
Glenn I am particularly interested in your point of view, I have already had tons of blood work done all with negative results, could you possibly point me in a direction of what other possible blood work I should have done, for that matter what other tests I should ask this new neurologist for. I have also been looking into having a body scan done for the simple reason of maybe it can tell me if a tumor might be causing this full body SFN, I see there are places in my community that offer EBT and CT scans as well as MRI scans...do you guys see any value at all in having one of these body scans done? What are the risks? What might be the value of one of these? Of course I appreciate anyone and everyone's thoughts, you guys are a blessing, thanks, Jan
Luke 1:37 For NOTHING is impossible with God!!
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I also have full body SFN. The thing is that in the first couple years it was living hell. Then somehow I got used to it, and there was an ebb and flow to the pain and madness. By the time I got used to it, it abated almost entirely for 3 years. A MV accident shook all my nerves up again and set off a bad flare. Lasted 6 months and abated again. As far as your scans, I don't believe that all the radiation exposure in a full body CT scan would be healthy. Alot of these SFN full body presentations are self limiting. I am not an expert but having had it for 8 years now, I can tell you that I have read thousands of posts on many sites including here in OZ & NZ over 8 years and most people say they eventually have enough recovery to lead normal lives again. Whats really important is to remember what was happening to you health-wise the weeks/months leading up to your symptoms as a clue to diagnosis.
Aussie