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May this book reach many and touch their lives in a wonderful way!! I hope to order one soon!
Blessings
Ramona
There are studies being done at UAB, the medical center where I had DBS, with some interesting possible applications, too. The head of the research department spoke at a Dystonia Support Group meeting in Birmingham, and I personally found his work f…
This is interesting, as I was correctly diagnosed by a MDS who works with Dr. Watts, after having been misdiagnosed by two other MDS's as having psychogenic illnesses. They found that I was partially dopamine responsive and I had DBS almost three ye…
Be aware that Dr. J "specializes" in diagnosing psychogenic illnesses. I read (really need to find that again...) somewhere that he considered that patients who were referred to him had already basically been through the wringer as far as diagnostic…
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 episodes…
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 in…
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
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
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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