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Old 02-08-2010, 03:51 PM   #4
jjm0019 jjm0019 is offline
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Join Date: Mar 2009
Location: san diego
Posts: 29
jjm0019 HB User
Re: I am new - neuropathy symptoms undiagnosed

Frustrated:

Has your neurologist conducted a "punch biopsy" on your leg to test for Small Fiber Neuropathy yet? If not I would have that done right away. The punch biopsy is really the only way to properly diagnosis SFN. I've been suffering with the disease since I was 18 years old. I'm 32 now. It's been a tough road to say the least. I wasn't diagnosis until I was 31. All the years prior my doctors told me the pain was in my head. They suggested cognitive therapy for "childhood trauma" even though I had two great parents and a terrific upbringing. My favorite one was when doctors would call me a drug addict because I would ask for meds to treat my pain. As Ruby stated, quickly deter your doctors from trying diagnosis your pain as a psychological condition. It's bogus and very unprofessional for doctors to assume your pain is psychological just because they can't fine a physical symptom. To answer your questions, I did go through a similar experience of not being diagnosed. All I can say is keep seeing different doctors and don't be afraid to tell them what you want and expect from them. Demand their time and make sure they hear your story before you leave their office. I suggest writing a letter stating your symptoms, history, date of onset, etc. Have the doctor read the letter before you see them so there is a good understanding of why they are seeing you. In my experience, if you throw too many symptoms at a doctor at one time, they usually start tuning you out at around number 2. So get it all on paper, that helped me. You also need to start treating your pain and give the meds time to work. Neuropathy is a painful disease that impacts people differently. Unfortunately taking a number of meds may be your only potential for relief. I take a few different medications that help a lot with my pain. Find a doctor that will treat your pain symptoms while you're trying to find a cause. There is no reason you should have to suffer from day to day. I'm taking the following:

20 MG Oxycotin 3 X a day
3-4 Norco 10/325 MG 3 x a day
Gabapentin 300 MG 3 x a day

I realize this may seem like a lot. But it let's me live my life in significantly less pain. The alternative is that I suffer. As long as you take everything as prescribed, you'll be ok. There was not an underlying reason for my SFN. It was categorized as "idiopathic." While the medicine seems like a lot I'm stuck knowing there is no reason or cure for my disease, and therefore, I do take some comfort in knowing the medicine does help me along my way.