no one knows!

    • Anonymous
      July 14, 2009 at 8:58 pm

      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 🙂

    • Anonymous
      July 14, 2009 at 9:34 pm

      You had fasiculations on your needle EMG?

      From what I know I don’t think CIDP has them.. but a condition called ALS does.

      However, ALS kills.. so I’d be darn surprised that Mayo wouldn’t take an interest in that.

    • Anonymous
      July 14, 2009 at 9:39 pm

      Site on EMG’s and ALS
      Please note.. other things have fasiculations I’m sure I just can’t pull anything out of my head.


    • Anonymous
      July 14, 2009 at 10:37 pm

      I found something.. and its not so grim.

      Its called Multifocal Motor Neuropathy (MMN).

      With your EMG showing motor loss, and fasiculations, I’m thinking that may be your best bet.

      Although, I’m a bit confused.. is your EMG showing you to be a primarily axonal loss?
      Why would anyone say you have CIDP with a primary axonal loss in the first place?

      With an axonal loss here are some things you can have, but it changes it up a lot:

      Sorry, I should really go to bed.. and I spend way too much time reading these sites.

    • Anonymous
      July 15, 2009 at 5:01 pm


      CIDP usually affects both extremeties somewhat evenly. You mentioned problems on one side, are there problems with both left and right?

    • Anonymous
      July 15, 2009 at 7:58 pm

      Hi Dick & dignosense (cool name) – I CAN RELATE TO IT! Dick, I have just as much trouble with both legs but that is what this doc said on his very short & sweet report. I wanted them to do the emg BEFORE I had my total knee replacement which by the way was on the left leg which is of course why most of the problems showed up on that leg, HELLO!!! Dignosense, the 1st neuro at mayo was the one that gave me that verbal dignosis as to what she really thought I had by her findings on the EMG but then this guy comes out from left field with what he said which was really nothing! I could not tell you if the EMG showed any of the twitching, I don’t know why it wouldn’t have since it goes on 24/7, it never stops! At first way back when I could not feel it, my husband was the one that noticed it laying next to me in bed. When I woke he asked me about it & I had no idea it was going on. Then over time I could feel it. At this point I’m so use to it, sometime I think to myself, oh cool it has stopped & then I will look at the legs & its like something is inside trying to get out, kind of funny actually & then I’m like oh ya I can feel it. I think it is just that I am so use to it!! Hey, there are worse things in life! Well thanks for trying you two but if anyone can tell me the gal that had been on here awhile back that has chronic lyme, I would love to hook up with her & compare notes. Thank you so very much.

    • Anonymous
      July 16, 2009 at 12:17 pm

      Hi Kathi, Her name is SaraChamp, she’s in Florida. You can either click on her name up under members list and send her a private message or you can put chronic lyme disease in the above search box and it will take you to her postings. Hope you can get some answers to help you get relief soon. Take care.