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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Ronda & Deb,

The jolts you're experiencing may be L'Hermitte Sign. I have them from time to time; two have dropped me to my knees. What to do? I try not to put my chin to my chest and that seems to be reducing my jolts, or 'zaps' as I've described them. During a visit my neuro induced a jolt (gee, thanks doc!) and then offered meds for pain. Because it is such a fleeting sensation I declined, but its nice to know there's something I can request should I ever feel the need.

As for the frustrations you're experiencing trying to get a dx, the following is a response I posted to some people in another board who were going thru situations similar to yours. I thought it might help you to see how I dealt with the frustration you're both experiencing. Keep us posted on your progress.

Dear ______,

I hear you all! Hang in there! Follow your instincts - you know your body and you know when things aren't as they should be.

I went thru exactly what you're all experiencing for approximately 3 years. I did just what every specialist prescribed: blood & urine tests to eliminate lyme, lupus, etc., had numerous MRI's (looking for brain or eye tumors), 3 LP's, examined by two different neuro-opthamalic surgeons, a neurologist, two endocrynologists, another neurologist, dermatologist (for the skin crawly feeling-AKA tingles), yet another neurolgist, a psychologist, and finally in frustration I just gave up. I quit doctoring, stop all meds, and figured this pain and all accompanying symptoms were all in my head. I trudged on for nearly a year until, in the midst of a severely painful ON attack I was sent to ANOTHER neurologist. Dragged along all my records, test results, MRI'S, etc., because I was just not up to going thru them all again. This man, 'Dr. Godsend' as far as I'm concerned, studied everything, kept a close eye on me, ordered another round of MRI, and in short order was able to dx MS.

Now, don't get me wrong; I was not thrilled at all to hear those two ugly letters. But I was so grateful to actually have a diagnosis. I felt like I'd finally ended a long, arduous journey. Really, just the beginning of another, but knowing I had a legitimate reason for feeling so bad and finally getting on a course of treatment made such a difference in my mental well being, that I was better able to handle the physical aspects. Sure, I still have those MeSsy days, but knowing what I'm dealing with and addressing it gives me a tremendous sense of empowerment.

Your doctor may not be able to give you answers just yet, but you can demand action: tests, MRI, LP. If this doctor won't listen, find one who will. And if that next one won't listen, move on. I went to three other neurologists before I found one who'd work with me, listen to me, delve into my concerns. Yes, it is a lot of work, especially when you're feeling lousy to begin with, but persevere! It is your right and your responsibility to yourself to get answers.

Good Luck,
Dee





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