Quote:
Originally Posted by zygopetalum
Brenda I feel so bad for you. Mine is still there but seems to have improved to some extent with COPD med changes, before that it absolutely destroyed my quality of life for a couple of years.
We've probably been looking at some of the same sites, did you find the Norwegian Study and the Erythromelalgia Foundation? The latter has a forum, it costs a little bit to join and I don't know if the info would be worth it but you might want to look at it. (sorry, newbie hasn't gotten around to learning how to link yet)
Some of the things I've come across stated that EM may not be as rare as has been thought and incidence has been increasing, they said it was probably not recognized and under reported. It can occur with diabetic neuropathy and I saw some mention of it with co-existing Reynauds. I can only imagine the pain you must be in with your blood vessels alternately dialating and constricting.
I'm not an expert but I think it matters if you have Em as a componant of PN because some of the actual pain is due to vascular changes. I'm not sure your Neuro is doing the best job possible (?), some of the replies I got in 'no neurologist' thread pointed out that many of them are focused on stroke victims, etc. and I think that is likely true. Atlanta is a big city, do they have any large neuro centers? If you are serious about flying up Norah's Dr. might be the best but there is also a neuro center in Oregon. My niece moved back home (also Wn state but the dry side) after years in Augusta, her son is still in Georgia and she flew him up for some medical testing because she felt our area was better. I don't know if that's really true.
I know you are in too much pain to be told to "hang in there", keep looking for answers and help.
Zygo
|
Zygo, your kind words and information have cheered me immensely. Thank you so much. I believe there is a large neurology dept at Emory Hospital - I will check into that. Re: visiting a dr. in WA, I'm always looking for a chance to see family in OR. Wow, just love that Columbia River Gorge!
The sympathy, empathy and concern I have found here amazes me...
These last few months have been horrendous. 8 dental surgeries - 5 abcesses/infections, a double hernia operation, and then on Jan 4th, 2011 I went in to have a pedicure and went through the roof with the pain. Podiatrist thought I had plantar fasciitis, had 4 cortizone shots, and a nerve block, plus had my feet bound for 2 weeks. Then had skin biopsy which showed neuropathy on 2/15. Been juggling medicines since then, as the neuropathy has worsened dramatically.
I was a fairly active person and my passion was golf. Now I sit most days with my feet up in the recliner or laying in bed. I have my own business but can't work with my feet down for more than a couple hours.
My husband is the most patient and understanding person, who is now helping me out with my company. He takes me to all my appts and is so wonderful (most of the time, like the rest of us!). My friends avoid me because they don't know what to say or do. I used to be the most positive, outgoing person and now I've become a dang Debbie Downer!
Anyway, things might be looking up - my dr. changed my meds to Lyrica (I'm titrating up right now) and it seems to be helping some.
Wow, this being able to vent sure is nice. People understand that I'm venting and not complaining.