Quote:
Originally Posted by IH8PN
I emailed my neurologist yesterday stating that while we were waiting for the Nerve Conduction Study that I'd like to proceed with more lab testing. I stated that at this point I'm leaning towards an autoimmune or hereditary disorder and asked if there was any more tests he could order. Here was his response.
"At this time I do no not have any additional blood tests in mind. We have done some autoimmune testing including ANA and ESR tests.
I would like to wait for the nerve conduction test to get done first before proceeding with more blood tests. If it shows any particular pattern, it would help direct our attention to specific testing. As you have pointed it, the nerve test could come back normal, but we don't know for sure until we have the test.
As we have discussed, peripheral neuropathy can be a frustrating condition. Up to 25% of peripheral neuropathy are "idiopathic," meaning there is no clear cause despite exhaustive testing. So far we have tested for almost all of the "treatable" kinds of peripheral neuropathy."
Keep in mind here are the tests run so far:
B12>1000
D 25-Hydroxy 26
TSH = normal
Fasting Glucose 91
A1c 5.1
Rheumatoid factor = normal
ESR = normal
Negative for Lyme, HIV, Hep C
I guess I'm just not sure how to respond and I'd like advice on how t proceed. I'm 4 months in to PN symptoms and the pain in my feet is pretty brutal. I'm anxious and eager to get this under control or at least find out what is going on. Low dose Notriprtyline and Gabapentin have done little if anything for my pain so I'm not eager to just keep bumping those up. I'm ready to ask for a pain management doctor so I can at least be on my feet a few hours a day without being in excruciating pain. I'm only 33! I'm worried now I'll have to go out on my own and try expensive testing my insurance wont cover. On top of that I fear I'll lose my job and health insurance. It's alot to deal with on top of the pain.
Sorry if I've been so repetitive in my posts. I'm slowly watching my life fall apart and the pain has me feeling suicidal at times. If it wasn't for this board I'd truly feel hopeless at this point, but I'm trying to be strong. Thanks for listening and any advice.
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I feel your pain! This sucks! I took in Liza Jane's checklist and told my neurologist I wasn't going to be satisfied until every single thing was crossed out. So she went down the list and finished up what was left on the list and guess what, they said everything came back (you guessed it my most hated word) NORMAL! I am about your same age and feel as though my life is slipping through my hands and I want something done. I don't know how long I can live feeling like this, people shouldn't feel like this until your 80. I have had 230 blood and urine test. Brain MRI, full body CT, ultrasound of my abdomen, neck and heart, 3 chest x rays. I came to the realization that doctors are taught a certain thing and that’s what they go by. If it’s not simple or something they don't see every day than they just don't know. The best things you can do is to try and bring things to their attention to search for. Find a doctor that just doesn't have a clue but is willing to try. My family doctor didn't have a clue but would entertain directions I would go to and would allow me to be tested for it most time without even being seen by him. I am very humble by the fact that I found some hope for me and am waiting a surgery that will hopefully fix me. Until then I suffer (unless I starve myself and my neuropathy is lots better). Anyways what supplements are you taking? I got more help from supplements than anything. I started going down the list finding what supplements helped with what type of neuropathy and would try them to see if they helped. It was $$ but I didn't care (if you find some that you might want to try but don't want to buy I may have it that I bought and made things worse that I could pass along). I said I would eat dog poop if it made it better. Come to find out all I have to do is starve myself and the pain goes away. Also boosting your antioxidants (if you need some reading on it I can send you some links) and vitamin levels (I stay away from supplemented b6 even in breakfast cereals as it inflames my nerves) is a good start and won't hurt. I also tried changing my diet cutting out gluten and sugar. Both helped me, it was hard but not as sucky as feeling like I am being poked with needles all over. Also just remember, it can always get worse and there is someone out there that is dealing with this that is worse off than you. I didn't think it could until it started affecting my heart. It went from sucking to scary sucking.