no one knows!

Hello all, It has been awhile since I posted here. Not sure where to turn & you all were SO VERY informative so thought I would run this by you all. !st neruo doc at mayo said she really thought I had CIDP the axol (sp) form & had LOTS of tests run & then told me she wanted me to go to her collegue, the head of the neruo dept at mayo so I waited for appt. you know the routine. I just knew I was finally after YEARS going to have an answer from him & we finally could start some kind of meds routine that would HELP! My husband & I went in to the appt. and this guy came out of no where with……don’t know! I’m like at a loss of words & husband is like trying to find questions to shoot @ him & I finally just said…your collegue said she really was sure it was CIDP & that is why I’m here based on all of her tests & you are telling me that I don’t have this? He was like yes that is what I’m saying. So at that point I had tears running down my face & I just said so what the hell do I have? He said I have no idea. I said well then could it have anything to do with my lyme that I had for YEARS before it was finally dignoised & treated? He is like maybe. So then I said so where do I go from here since I seem to be right back friggin where I started & that I had to have some kind of relief for these INTENSE leg spasms & he said well I will give your primary doc some medicine ideas – there is this seizure medicine that sometimes can block the nerve pathway & help. What he basically was saying don’t come back since I don’t know what you have & there is no other tests to run! Back to my primary & he told me originally not to go to mayo but to try mayo in rochester & or duke anyway he looked up the med because he said hell this is not even a med I usually or have ever given out. So now I am on oxcarbazepine in the a.m. & p.m. Of course about a month after the appt. I get the neurology consult report and here is where my question come in. This is what he said in part of the report. EMG examination here recently showed chronic lower extremity motor denervative changes With relation potential stent the left anterior and posterior leg. What the heck does all that mean? It does also mention the possibility of fasciculations syndrome which I know about & have been tried on MANY different drugs for this & nothing worked & its just seems to progress. The research I did on fasciculations back when this was what they thought I had was that it does not seem to cause as much pain as I have or the severity of the spasms that I experience. Does anyone have any input to this? I did talk with a gal here a few months ago that also had chronic lyme and I would love to get her input if anyone knows who that may be or could pass this info. too, I would greatly appreciate it since us lyme people seem to be in a class all of our own. Thank you.
A very frustrated Kathi 🙂