JHi all, I’m sorry I have been away from this board. Just been busy trying to keep, keeping on!! I started back to work in September. I was seen at Mayo in June and they did a lot of testing that really found nothing. No neuropathy and they wouldn’t render me an EM diagnosis.
I am on lyrica, Cytotec and aspirin during the day along with amitryptoline, cymbalta and just started low dose naltrexone at night.
I have seen a Lyme doc who thinks I have Lyme despite negative tests. Ahhh, what to do?
I had the skin punch biopsy last December to check for small fiber neuropathy and it was normal.
Given that my thighs and toes burn, I want another biopsy to check only those areas. Maybe I have patchy SFN??
Living with this unknown frightens me.
I hope all is well!
Hey Amy,
Sorry to hear of your frustrations. It’s helpful to get a straight forward diagnosis. Keep strong & persevere.
Elis
Hi Amy,
Yes as Elis says keep persevering you will get there in the end someone will give you a proper diagnosis.
I must admit I nearly gave up as it took so long to find out I had EM and after that a long time to find the cause.
There is always a chance with tests that things might not have been done correctly. There was a time nothing to do with my EM that I was being tested for Cushing’s Syndrome. It involved two blood tests over 2 days. The first day was fine, but on the second the nurse that took my blood didn’t put the sample in ice, which it should have been. I questioned her at the time, but she got quite nasty and said she had been doing her job for over 20 years so she knew what she was doing. The results were negative and so I asked my consultant could it be repeated and why I thought it should. He agreed and hey presto this time it was positive! So, it just goes to show sometimes test results can be wrong for various reasons.
I hope you get your biopsy done again.
Sheltielife