← Return to Anyone here dealing with peripheral neuropathy?

rabbit10 (@rabbit10)

Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Aug 16 7:39am | Replies (2543)

Comment receiving replies

Thanks for the info. No I have not heard of anything my doctor (an internist) thinks I am making it all up so I am now looking on my own. Do you have any though doctors I could see in the phx metro area (my surgeon died 10 yrs ago). I am thinking of I should have an MRI is this a waste of $?

Jump to this post

Replies to "Thanks for the info. No I have not heard of anything my doctor (an internist) thinks..."

I think since you mentioned Phoenix area if it were me I would try to get an appointment at Mayo Clinic Arizona, especially if there is a possibility of a compressed nerve from a previous surgery causing the nerve pain and other symptoms.

If you would like to seek help at Mayo Clinic Arizona, the contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

In my quest for answers, I wanted an MRI just like everyone else seemed to get as they were trying to be diagnosed. My first Neurologist (I lived in a different state then) wanted to do one, but I had an implanted defibrillator with metal that prohibited one. So last year, after my ICD finally died after an extraordinary battery life, I asked for new wiring to go with the replacement so it could be up to modern standards and be MRI friendly.
However, I was with a different Neurologist then and he wouldn’t do it, said that it wouldn’t tell us anything. He said we already knew I had idiopathic severe loss axonal nerve PN, and MRI would be a waste. I was in the process of changing Neurologists, and my new Neurologist concurs with the other one. My first impression of this Neurologist is very very good, especially since he replaced one that’s beyond words to describe how awful he was; so I want to trust the new doc. The seedling of doubt I have is that the two of them work for the same medical department, and I just think I’d have closure if I had an MRI to be “positive “ nothing else is going on.
So I’m working on trying to get over not being able to get an MRI. 19 years ago I was having strange heart rate increases, and near-fainting episodes and wanted a stress test, but my doctor laughed it off, saying I was a physically fit marathon runner, and it’s normal for a professional 39 yr old woman to be anxious or stressed, and a happy pill would help (took 1, then threw the bottle away). Three weeks later I found out I had dropped dead (Sudden Cardiac Death) while on an exercise run; woke up after being on life support several days, with a good diagnosis of my heart issue and my new life started with an ICD. My doctor visited me in the hospital daily (back then they did that!). He cried, he felt worse than I did for not ordering the cardiac tests.
I survived and started advocating more for my health then. A couple of years ago, my new/first ever ENT wanted to watch a growth on my neck, since I was a new patient. A medical university had actually found the lump in a scan 10 months earlier but failed to share the scan results with anyone, so I found out only because it was in the records I requested when I was moving out of state. This ENT hadn’t received my official reports from this terrible hospital yet, but took my word and paper copy of the test I had, and did the biopsy instead of waiting 4 more months until a next appointment. Sure enough, it was cancer. So I have had success in stepping up my advocacy, I just can’t get this MRI though. So I’ve been using some positive thinking and coping strategies recommended by folks here, and trying remove that little doubt I have of an MRI being worthless for me.
Good luck with your decision, if you’re given an option. For me, I’d like the closure of knowing for sure it does or doesn’t add value, as several other things in my medical life have been the exception to the rule. But it’s a personal choice if offered.