Originally Posted by Idiopathic PN
Hi everyone. I am new in this group. So, kindly bear with me... i hope to get some insights from member of the same condition as mine.
Last July 2011, I was diagnosed of Peripheral Neuropathy due to my feet pain (which I thought was just a result of my regular walking). When my neuro said that I have PN, I told him that I have no diabetes (which I thought was the only cause of PN). He said that mine is idiopathic neuropathy. I thought that it was just one of those "passing conditions" that will go away with rest knowing that I was not given any prescription or any follow-ups. My rheumatologist put me on Plaquenil (due to my osteoarthritis) mid September 2011 and by October 20, I experienced this severe itching all over my body: arms, legs, neck and torso (but mostly in my legs and arms). I thought it was due to Plaquenil. My rheumatologist asked me to stopped and gave me Vistaril. I was on Vistaril for 2 weeks but nothing improved. By this time, the itchiness became a deep, stabbing pins and needles and burning sensations. I went back to my neurologist and gave me several tests: 1. thyroid antibodies, 2. Lyme Disease, 3. Sedementation Rate, 4.Cyclic Citrullinated Peptide, 5. CRP Standard, 6. Rheumatoid Factor, 7. Anti-Hm Antibodies, 8. Immunofixation Serum, 9. RPR, 10. Urine test - to find heavy metal and 11. Brain MRI, 11. Vit B12 (normal). All results came back negative.
I would have been happy of the negative results but it makes me sad because no underlying condition will be treated to stop the neuropathy.
I am now on Gabapentin 100mg 3caps 3x a day. My neuro said that i can play around my dosage for as long that I dont exceed 12 caps. I have been trying to experiment what dosage works for me but so far I am still in the process.
I tried a number of acupuncture sessions, unfortunately, it did not work for me.
I am so frustrated with this horrible pain. Even the touch of my clothes is giving me so pain. I am using Capsaicin cream, it gives me burning sensation but the burning sensation. For 2 weeks, the burning sensation masked the stabbing pain but it does not do anything for the pain in my feet.
It gives me hope reading one of the members sharing that his/her neuropathy improves through the years and with teh help of vitamins.
Thank you in advance for your thoughts.
Hi there. Welcome.
I see that Mrs. D has asked the same question about B-12 that I did. And just so you know you have lots of company in the Idiopathic Peripheral Neuropathy Department. My husband was diagnosed with the exact same thing 20 years ago. He had all the same tests that you had. In his case they do not know why. They think it's this and they think it's that, but no definite diagnosis.
My husband tried Neurontin and Lyrica but they both made him sick. What worked with the severe pain in his feet was that 10 years ago he was put on the Fentanyl patch. That was the only thing that made his life tolerable. But they had to up the dose every few months until he was put on the maximum dosage. Then he had to go into detox to get off of the stuff.
This doesn't happen with everyone but it happened to my husband.
I really do wish you well on your journey.
If you do know your B-12 levels, kindly post here.
I have diabetic neuropathy (completely symptom free) because I take a special form of B-12. It's called Methyl B-12. I take 5000 every other day (I started with 1000 every day, then after one week, I started the 5000. Now I store it well. My last blood test had be at a level of 2000.
So I only need to take it two or three times a week now.
Look into it. There's all kinds of info on the internet about Methyl B-12 and neuropathy.
All the best