[lailavia]

Hi eveyone...I am being sent to John's Hopkin's for further evaluation by my local neuro...due to increased fatigue in arms (esp with repetative activities) and at night....I have to prop a book up on my pillow and notice it the most...there have also been a change on mri in past 5 months.....some new lesions....he did the emg and ncs and doppler on major arteries, but then said something about a spinal tap and backed off and said lets see what they say...
I want to make sure they at least do the bare minimum of tests....heading for PN testing it looks like, what about eeg and evoked potential? They are putting me with the same doc, unless he changes his mind after reviewing my notes, who I saw for a shaking disorder in April...he called in somatic and possibly related to my pots....didn't offer any help at all or even a different type doctor....that is why I don't really want to see him...I was so dissapointed I cried....at the appt....

I have been looking for help for that problem (I wake up shaking and weak) everyday for so long I thought I was probly going to get some real help......he make me feel so unspecial...like there are so many people coming there looking for miracles, etc....and so many unanswered dx...I mean I haven't even had a sleep study and I wake up to this everyday! I feel like I am jinxed, but hopefully my new records will at least have them test me correctly...

.I have thus far been dx with fibro and cfs since 1995 with only one old lesion that couldve been migraine consistent. The new mri also listed possiblity of vascular disease.....and I have a drooppy left lid and a dent on my nose I am supposed to see rhemy for..I am being hit all at once.....seems unreal that there are all these tests but no one can give me one...Well my appt is Aug 22 i can only pray I get some help here....or I guess its on to another doc after Hopkins????

Sorry for all this ramble but I have never found out what the morning problem is or anyone else who seems to have it....and I am on beta blockers, anti anxiety meds,,,,i have been thru the mill......maybe it is cardiac...I do need to find a new cardiac doc re: POTS as mine left if I can just come up with the will power....

ANY ideas would be appreciated I will make sure to be more collected this time Hopefully he will put me with another doc....!!!