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Kimberly,
I very much understand the frustration with psychogenic and conversion disorder diagnoses, as I have been handed both of those myself, before being diagnosed with Generalized Dystonia and later having had DBS. One of our sons has episode...
Monica,
Many movement disorders are quite sensitive to stimuli such as startling, lights, noises, etc. In my own case, high pitched noises, bright and flashing lights, and being startled can all trigger intense dystonic spasms, usually temporary i...
I was concerned that you might be heading to a "top MDS" who actually specializes in psychogenic research, and that is the last thing you need right now! If you are going to a doc in LA, it is not the doc I was thinking of.
Ramona
Just checking - you are not in Texas, are you? Will tell you why IF you are...
Ramona
There is a group specific for those who have dystonia, too. It is DBSforDystonia.
Blessings
Ramona
Hey Beka, House used it, so it MUST be a valid therapy, right?! :-)
Hmmm, there sure doesn't seem to be much information here regarding dystonia. Am I missing something? Is that the point - are you trying to have folks make comments to help them understand? Wonder which post it would be more applicable on?
Ramona
Yes, I have been diagnosed with RLS and it eventually began to fall into the "severe" category. I finally broke down and started taking Mirapex for it and that was one of the best decisions I ever made - I finally began to get some sleep. I am als...
Comment Wall (2 comments)
- At 9:32am on July 9, 2009,
Canary3 said… - hi ramoma, I'm new to the grp,think it's great. Waiting for upcoming MDS appt. for a revised dx. Was dx. prev with DRD for the last 2 yrs.,just got DNA results of neg. Assume new dx will be gen tardive dystonia. On Sin.CR,x5 feel it needs to be increased once again. You said you where becoming resistant to Siniment? Earlier last yr. was consid. bad candid. for D.B.S. Now with a diff dx. poss. this will change. Would you recomm. going through with D.B.S.? @ this time going through testing with Urologist for neurogenic bladder. Ativan, Baclof ect. stop me from urin. altogether. Lft. shoulder is contract. Can walk but not far ,hips feel like they pop,along with my shoulders. Should use a w/c @ times I guess but I just don't go far. Can set off Dystonic Episodes,very painful,just by closing a cupboard the wrong way. Set to have a mammagram soon,how I don't know how.Can't raise arm more than a couple of inches. Any advice on how you cope? I have no support @ home,husband just dx. with kidney dis. Any adv. on quest. to ask my Neuro? Feel overwhelmed and negl. by the health system. A family member insisting on me havivg D.B.S. but afraid. I'm 52,not in great health now I assume, last ECG was borderline a couple of years ago. Well, thanks for letting me vent. Canary
- At 12:36pm on August 13, 2008,
karen said… - hi ramona..i have posted with you on the dmrf and dystonia friends bb and just wanted to stop by and say hi..hope all is going well with you and your family!!
karen ;0)
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