Thanks so much for your feedback.

The thing is ... I feel so discounted even (and perhaps especially) by medical professionals. I have gotten the whole "oh, this was all so stressful for you ... maybe it's just depression" bullcrap so many times that I have started to feel like I'm losing it!

When I met with the neurologist on Friday, he reiterated that Chemotherapy related neuropathy goes away within a year and so it can't be that. When I told him that my oncologist suggested that sometimes there are rare occurrences of off-treatment worsening and that I have an appt. at a big U and their late-effects clinic for evaluation he looked at me skeptically.

He said that the sensory neuropathy in my hands/feet was mild ... and frankly, I didn't even know that I was experiencing a difference in cold perception (for example) ... that isn't even my complaint. It is the burning and pain ... and the facial/tongue issues.

He told me point blank that he had "never in 30 years heard of a patient with this clustering of symptoms". Another thing he told me is that neuropathy does NOT cause fatigue and that my fatigue has to be from something else. Well, OK.

He did, however, suggest small fiber neuropathy and we will be doing a repeat EMG and punch biopsy.

I felt ok about the appt. until later. My husband is also a physician and the two of them work together. He actually called my husband later and asked if it could be psychological. My husband told him that we have been married 17 years and he knows me and ... no ... he doesn't feel it is.

This just makes me feel irate. I feel completely blamed for my symptoms. I wasn't depressed before all of this started, but I do feel depressed now.

As far as my test results:

I had a normal MRI of the head. I have a slight bulging disk in my thoracic spine that was evaluated by a neurosurgeon as being non-surgical.

My EMG was normal with the exception of my lower legs (it was felt that this change could be consistent with a vincristine associated neuropathy).

My B12 was 161 a year ago. It is now in the 300 range with monthly injections. My vitamin D was low and one measure was "undetectable". I was told the D was related to living in the north. The neurologist that I saw last week indicated that 161 is "not low" for B12. My internist a year ago had be on a week of daily injections and then monthly ... whatever ...

I get so tired of hearing so many different things. I'm also extremely frustrated by the attitude of medical professionals. I feel so isolated.

Thanks for hearing me out.

Kris