I think i may have the dreaded MS

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Parosysmal Dyskinesia as diagnosis

Postby scotty » Sat Jul 25, 2009 4:08 pm

Hi JL,
Thanks for your post. I have now been to 3 neurologists, seen 3 or 4 Physicians, had 2 MRI's and a lumber puncture, an EEG a video Telemetry (an EEG with video recording over 2.5days including nights) god only knows how many bloods, etc. etc. Anyhow we finally have got a tentative diagnosis based on the evidence. The last Neuro believes it to be Paroxysmal Dyskinesia with some episodes of Dystonia. From what i can gather people with MS that have tremors, numbness and balance problems and even the MS Hug actually have PD as a secondary to their MS so that explains why i was drawn to TIMS but have not been showing on the MRI's (YET). I am hoping like hell that i only have the PD and not MS, we are just so glad to be finally close to a diagnosis. anyhow thanks for the links i will have a look at them, i am sure there will be some useful information.
Cheers Scotty.
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Postby LR1234 » Sat Jul 25, 2009 4:26 pm

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Last edited by LR1234 on Tue Mar 06, 2012 1:29 am, edited 1 time in total.
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Postby scotty » Sat Jul 25, 2009 10:18 pm

Hey LR,
Thanks for your post. Yes i read on a different thread, I think it was Jules's (who i have also been in contact with) where you said you had heaps of MRI's and LPs and finally something showed. I was tempted to butt in and ask about all that, what symptoms and over what time frame etc. as it is obvious that in many cases people are going through the same thing and coming up with negative results. 14 years is certainly a long time to go and finally get the diagnosis, you must have been going out of your mind, i know we were starting to get pretty cheesed off and it is only 10 months that we have been actively seeking answers. You mentioned that you feel the tests are flawed but perhaps the Dr's don't know enough about MS and the criteria for diagnosis is insufficient. When i was in hospital last time i mentioned to the Physician that i thought i may have MS but he straight away dismissed that as his touchy feely tests revealed nothing. It now looks like i was at least half on the right track it is just that they couldn't put 2 and 2 together and come up with PD instead of MS (at least for the moment). Yes you are right that i had a good shrink, i think he is one of the best Dr's i have been to, at least he listened and explained things. At least now i can tell them yes the problem is in my head, but i am not imagining things. I don't know if you know what PD is but basically it is a block in the sodium ion channels where the messages don't get relayed properly.

Anyhow i hope you can get some relief for your symptoms and thanks again for your post.
Scotty.
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