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Old 07-17-2012, 03:06 AM
BethO2L BethO2L is offline
Junior Member
 
Join Date: Dec 2007
Location: Illinois
Posts: 89
15 yr Member
BethO2L BethO2L is offline
Junior Member
 
Join Date: Dec 2007
Location: Illinois
Posts: 89
15 yr Member
Default ATypical Pain

So sorry to hear that you have been through do much with this,,,and being so young makes it even worse. I can understand the hard decision you are facing sine my daughter has CFS and because of misdiagnosis and trying to find someone who could treat her,, she too had to postpone her last year of college for about two years,,,

I can say very honestly that you are VERY lucky that you did not have the MVD. It would have only made it worse. I have Atypical TN and developed AD after having the MVD,,, you lucked out,,be grateful.

It may not be much help but don't give up hope,, it sounds SO easy when they give you the stats on the MVD and we ALL want a procedure or a pill that is going to make this horrible disorder go away,,,but it's just not that easy...

It may be a long shot but check out the thread on PNS,,,, I had mine implanted 6 months ago and it saved my life,, and I am completely serious about that.... perhaps since your pain is so difficult to treat you might be a candidate for it,,,, at least look into it.
Unluckily your regular MD or Neuro will not be able to advise you on this...this procedure is only (safely) being done at a few hospitals in the country....however you may be able to send your records to Cleveland and have them reviewed to see if you fit their profile..I would at least consider doing that,,,, and your insurance would cover the office visit because you are always allowed a second opinion...

Feel free to private message me if you would like and perhaps I can help a bit more,,I have been a support group leader for many years and might be able to help see if some lifestyle changes might help as well...I can also give you more info on the PNS since I have one....
the offer is there if you need me...Good Luck Beth
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