many tests, many doctors, no diagnosis
 

Hello,

I am new and hoping for information, guidance, support, and some hope, if possible.

Four years ago after successful treatment for throat cancer I began having difficulty walking. Neurologists twice have said it was neuropathy and myelopathy from the treatment and would resolve in one to two years. Well, it's only become worse and I now use a walker full-time for fear of falling.

I've had many MRIs and blood work that have ruled out some of the scariest diseases, but I've heard the word "puzzled" many times now.

I've been referred to a neuro-oncologist and that's pretty scary - brain tumor!!!?

I despair of ever having a diagnosis and if not then how will I cope with the progressing symptoms both emotionally and physically?

Anyone out there like me?

Thanks.

Hi bamboo123

Welcome to NeuroTalk :).

I am sorry to read about your problems.

Often neuropathy can be hard to diagnose; sometimes it has no known cause (it is idiopathic).

The PN forum (https://www.neurotalk.org/forum20/) is very active so if you describe what you have experienced there other members may be able to make helpful suggestions.

All the best.

Good day, Bamboo123. That's great that your cancer was successfully treated. But not so great that you now have other issues.

Do you have copies of any tests that have been run?

Have you had any basic testing done, such as vitamin B12, metabolic panel, CBC (complete blood count), TSH, etc?

Mayo Clinic did a study years ago that showed vitamin B12 going in to any areas of cancer, possibly in an attempt to heal cells. That might result in a deficiency.

Did you have radiation or chemotherapy?

Sometimes you have to see more than one kind of doctor, so that you can get "fresh eyes" on new health issues. What kind of doctors have you been seeing?

I think it's good that they are trying to rule out a spread of cancer, which I assume is why they are sending you to the neuro-oncologist. I think it's a good idea to have an internist see you, to rule other basic things out.

Please do get ALL of your test results. Sometimes doctors don't tell patients everything. Don't despair!!! Treat yourself with lots of love and care. Stress isn't good for the body. Try to focus on what you love to do, and what makes you happy. Doctoring is exhausting. You need to shore yourself up.

The peripheral neuropathy forum is great. I'm on the MG (myasthenia gravis) forum. Lots of great people here to talk to! I hope you can find answers soon.

Annie