I would get a second opinion

August 16, 2008 at 5:58 am

I think I would get a second opinion. Did this doctor run other test on you and is he a specialist from a good hospital? Reason asking is they told me in 1990 that they thought I had MS. Then it was not MS. Then they did a nerve biopsy that only showed Neuropathy. The same as yours. They called mine Heriditary. Mine turned out to be caused by Systemic Lupus after going to the University of PA Hospital. Now I have CIDP of unknown etology but been seeing local doctors in my area that are not equiped for rare problems. They do not have the labs or equipment in my area to diagnose me properly. Even had one doctor mess my records up saying I no longer had Lupus anymore. But a skin biopsy is telling them I still have Lupus. Sometimes if a disease is laying dormant not showing positive labs, it can cause Neuropathy and then the disease finally comes out of the woodwork like it did with me. So if the doctors are not sure they will call it Heriditary. Not alway’s meaning Heriditary…could be a disease not yet showing positive labs. Any other symptoms besides the nerve damage going on? I had no idea what Lupus was in my late 20’s. Never heard of the disease or the symptoms. And the symptoms were there the entire time. But did not realize they were all connected. Would get migraines but thought it was just a headache. Broke out in rash and thought it was an allergy at first. Upset stomachs that I thought I ate something bad. Write down every little symptom you have even if it’s mild. Joint pain, write it down. Keep a log and then let your doctors know. If they can’t give you answers, then get seen by a top notch specialist. MDA/Clinics will also be able to tell if this is Heriditary or not! Like I said! You might be in the beginning stages of a disease process and will need treatment later on when it becomes active. But making sure is the best bet. The last neurologist I saw in June was good. After suffering for quite a while because of the one doctor that did not take the time he should have with me. He thinks I have CIDP that is being caused by Systemic Lupus. Rare but it happens. So when I hear that Heriditary Neuropathy word. I know different now because of what I went through. Wish you my best and hope all goes well!