Quote:
Originally Posted by amike
Hello SFNgirl.
I'm sorry to hear about all the pain and crap you are experiencing. The face incident sounds really sore. As I understand it, anything close to a diagnosis of "trigeminal neuralgia" is about as bad as it gets.
The typical portrayal of symptoms in cases of SFN begins with a "glove or stocking" pattern, meaning the symptoms typically begin in the hands or the feet (or both). The progression over time includes further symptoms going from these peripheral areas up the arms or legs towards the "trunk" of the body. In other words there is a natural progression which follows a systematic "length dependent" pattern.
The "non-length dependent" SFN diagnosis does not follow the typical progression noted above. One way of figuring out if you have non-length dependent version is to systematically review the presentation of your symptoms--did they start in other places on your body before they started in your hands and/or feet? Did they jump to your torso/face before they worked up your arms and/or legs?
There is a good possibility that the nerve biopsy you had done during earlier testing will confirm your diagnoses of NLD SFN/G. You should ask your doctors. The word "idiopathic" in your diagnosis likely refers to either: a) an unknown etiology of your SFN, b) aytpical progression of your SFN without confirmatory evidence of NLD SFN/G; or c) NLD SFN/G as confirmed by the biopsy.
Most physicians don't have an understanding of NLD SFN/G because this is a rare diagnosis. I can't remember the specifics but I seem to recall that it affects only about 5% of the population of those referred to specialized neurology clinics. Most regular MDs just never run into it, even those who specialize in diabetes where SFN is unfortunately fairly common. Where did you have your testing done? I know that UC has the Center for Peripheral Neuropathy which might be good for a second opinion, etc. I'm sure there are other great clinics in your area but I was just reading about this one.
Anyway, hang in there. Which reminds me that the primary treatment for NLD SFN/G is pain management and trying to live a healthy lifestyle. For pain management people often end up having to go with time-release tramadol or time-release morphine (Avinza) or time-release Oxycodone (OxyContin). Hopefully you don't have to go there, but if you do, I hope it helps.
I'd be happy to talk more if you need a friendly sounding board,
Mike
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Thanks for the very helpful reply. It sounds as though you have nld SFN, and is the /g for ganglionopathy? Since I posted my question, I had a follow up w my neurologist and it seems in his notes he now defined mine as nld SFN. So I guess thats sort of official. I am considering going for second opinion, but thinking mayo or Hopkins which my primary doc recommends.
In my case, it's hard to tell based on your explanation of nld pattern. Everything all started in my low back, and as I am (was) a runner, I assumed and my primary doc assumed it was a disc issue. After a while, I started having weird pains and freezing sensations down my left leg and then more significantly in my left foot. The strange freezing feeling then was going across my low back, felt like I had used Ben gay or icy hot cream, like a cold burning feeling. I then can't say the exact order as to upper back, right leg and foot and hands beginning to go numb. But it certainly did not follow a systematic pattern. In the midst of testing and meeting a neurologist, I had the face thing, still a mystery as my neuro does not know how it could be connected. It seems to me it must either be related to SFN or was actually a fluke jaw thing, because during the attack my bite was actually off and then settled back to normal after the attack subsided. Was absolutely the most pain I have felt in my life.
In your case, is it idiopathic or have they determined a cause? My neuro has ordered a few last tests, CT scan of chest and abdomen (looking for malignincies which he said he does not believe will be the case thankfully), but he ordered paraneoplastic panel and another autoantibody panel. He said he is now looking for very rare things, but most likely going to be a focus on pain management as you suggest. I am taking time release Tramadol and it helps a bit but not nearly enough. I have just weened off gabapentin (from 2700). And about to try lyrica to see if better results w less side effects. Have you had luck w any particular pain mgt strategy?
Thanks for the info