[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!!

[Aussie99]

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!!

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

[glenntaj]

--might be indicated if serological tests indicated a possibility of cancer; otherwise it probably wouldn't reveal anything that one wouldn't already know.
There are some cases of neuropathy due to such "paraneoplastic syndromes", but they are not common and they usually are traceable to a definite cancerous process.

An exception may be neuronopathy due to Anti-hu antibodies, which are associated with lung cancers for the most part (especially small cell lung cancers), and which may show up well before a tumor is discovered; have you had that serological test?

In general, I still recommend the Liza Jaen spreadsheets as a pretty exhaustive guide to testing for neurological conditions--www.lizajane.org--you should look that over to see what testing you've had and not had. (It's also a good way to track tests results over time to discern patterns.)

[heb1212]

Hi, Jan.... Oh, I so feel for you, emotionally and physically. I imagine you're reaching out to another neurologist because you're just desperate for answers and relief. I face each day wondering how I'll ever carry on with this, and then somehow I do. Life completely altered, though. I have the SFN everywhere too, including my mouth and face. Absolutely cruel. I know your story, and it's hard to believe that a rather ordinary illness followed by your vaccination could have spawned all this, but I'm here to tell you that something quite similar happened to me. There are times that I look down at my skin and think how can I not be on fire? Why can't anybody SEE this? It's a lonely experience, too. You look fine and healthy, except if someone looks in your eyes they may see anguish or the look of exhaustion from the never ending pain. Ughh... I've always hated drama and been a steady ship amidst storms; but this one has truly rocked me to the core. The search for answers allows hope, I think, that there will be that moment of Ah-hah by that one doctor who can figure it all out. It's such a mystery, isn't it? How/why did my body betray me? And why can't the best medical doctors figure it out? After all, they're successfully dealing with people a lot sicker than me, right? Then, there's our shared faith in God. Why is He so silent when we are reaching for Him, so desperately, for so long? This most bizarre illness has taken so much; if refuse to allow it to take "the gift." Be strong in the Lord, Jan, and allow His grace to help you through another day. If He guides you to another doctor, I truly hope it gives you an answer that gives you peace.

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!!

[Liftyourhands7]

You guys are so awesome! Aussie99 was your neuropathy ever diagnosed as to what was causing it, or did they call it idiopathic? Glenn, I do believe I did have the blood test you were speaking of, I also just had a CT scan of my chest and lungs with contrast and it did not show anything. This burning mouth syndrome is driving me crazy, I have to chew gum almost all of the time because my mouth is so dry, who knows what is causing this, is it the SFSN or is it something else? So many questions. I know what you mean heb1212 I look at my skin often and wonder the same thing, how can I be burning this bad and not be on fire! My Doctor wants to start me on a new medication, Lyrica, I filled the prescription a couple of weeks ago but I haven't started on it yet, I'm still taking Gabapentin, I can't believe how expensive the Lyrica is! oh my Gosh! Heb1212 I sent you a private message, did you get it yet? Anyway friends I will keep you posted as to my progress, I have many more questions I want to ask, but don't have time to post them today. For those of you who pray will you please ask the Lord to send me to the right Doctor so I can at least get the help I need to treat all these symptoms, this is all pretty depressing. I know the Lord has sent me you wonderful group of people, thank you for all your help and your patience with me. I will continue to pray for each one of you! Blessings, Jan