Navydad, have they done the hereditary neuropathy tests on you? Also Rob, it may be worth a try to see if your issues are in anyway a genetically caused situation.
I do understand your feelings about pain clinics....I am not fond of them either. My last appt. I left after sitting 3 hours in the waiting room!
Yes, it is frustrating NOT to have a 'disease' when you NEED disability payments. This is really a dilemma. I think that things should be more based on FUNCTION not on the name of the disease. The legal system which doles out disability is old and does not work. This is one reason, I haven't filed....and also that I timed out....I haven't worked for 10 quarters there by losing the ability to file.
Anyway, I was thinking they could put in a morphine pump? I think a pain clinic has to do that.
I think anger is part of grieving....it is a process and we all go thru it to one extent or another....when we get stuck, we need a counselor or some person, maybe a minister or professional to help us get beyond this. If we get stuck in anger, we get bitter and that hurts no one but us.
I dont know if they have or not Inga,, (hereditary),,, as far as I know from my family history,, I dont believe any of my relatives have this type of neuropathy or any neuropathy,, now they may have and didnt know what it was,, My Aunt is 88 today,, her sister,, (my mom),, is 82,,, but I guess its possible a handed down neuropathy might skip a generation,, but I dont know that as fact,, I do kow there are some infectious neuropathys,,, some of which I have had or still have,, in addition to the pain cllinic I see a infectious disease doctor soon,, shes nice and I think we can get on the same page to see if its a infectious thing doing this,,, immunology might be next,, one I was seeing was good at treating hay fever,, not much good for anything else