There’s times I feel like I have dealt with this. Other times very frustrated by the lack of care and then I have the days I just cry. I had a really bad night last night between muscle spasms and nerve pain. I listened to a doctor two days ago on a lecture about neuropathy and becoming complacent in your treatment. For me since my neurologist died in 2022 I have been pushed off to the side and have gotten progressively worse.
I can’t believe I spent money to fly to Boston to see a research neurologist to be told she can’t treat me because I live in Texas. The food very expensive 30.00 for one sandwich.
She did all these recommendations and promises just to be lied to.
Yesterday when she told us ( my husband and I) she would help us excited then lied to. Truthfully, I do not know where to go from here. So accepting this is difficult when you can’t get treatment. I have severe axonal sensorimotor polyneuropathy and small fiber neuropathy. Then you’re told it’s in your heart and the doctors can’t control blood pressure and arrhythmias. The electrophsiologist gave me seven years to live. I am sitting hear thinking only God knows when you are dying. So I really don’t believe you can 100% accept this disease when it keeps progressing and you get worse. Falling stinks over balance issues. To me it’s just some days are worse than others.