Symptoms Updated

This video is a very good display of Carol's technique and the skill she uses with all her clients. Short clips have been added to the original to illustrate how difficult it is for Bill to perform mundane tasks. A DVD disc of this video is used to display Bill's symptoms to doctors who examine him. Since Bill does not always display the same symptoms during an office visit, Carol captured them on a day when they were clearly visible. Most doctors really appreciate having the video, as a picture tells them so much more than a few minutes in the examination room.

Category:

People & Blogs

Tags:

• health
• care
• issues
• symptoms
• twitches
• tremors
• dystonia
• fasciculation

[TheUndiagnosed]

I think this is a great idea to speed up the process (or at least increase the chances) of getting a diagnosis. I have been getting really strange neurological-like symptoms myself for the last 6 months (different and very mild compared to Bill's but still quite worrisome).

Have seen 2 neuros and 2 GPs so far and still nothing....

How is Bill doing now? did he get a diagnosis? Does it also affect cognition(concentration, problems solving, memory)?

How long has he been having these symptoms?

[H1gh3rP0w3r]

Here's hoping you have better luck than we did!

Bill has been out of work on medical disability for two years now, and his symptoms have not abated. Three or four times a day he struggles in the throes of dystonia attacks. Mentally he is as alert and hopeful as ever, and his optimism and cheerful demeanor serve as a great example for anyone going through similar issues to stay hopeful and enjoy life every moment....no matter what the future may bring.

[kaazoom]

Thank you for this. I too have a neurological condition that is yet to be diagnosed. I know how frustating it is being ill yet no one being able to get ny answers. I too find that my symptoms are not always visible when I see consultants. Perhaps I should do the same and record them on video. I hope you get an answer soon.

[H1gh3rP0w3r]

Thank you so much! If I have helped a single person avoid the pitfalls I've gone through with this traumatic experience of mine, then I consider it worth some of the pain!

Taking the video with me to every doctor's visit has been "worth a thousand words" many, many times over! Every doctor says that they would have guessed something entirely different if they had just seen me walk into the office without the video!

-=b=-

[H1gh3rP0w3r]

Based on medical history, MRI films, EEG, EMG, and other test results, more than a half-dozen specialists have reviewed the case with more than a half-dozen widely varying opinions. A specialist in dystonia will be reviewing the case in late September. It is possible that he may recommend a(nother) cervical fusion to reduce the pressure on the spinal cord at the C4-5 level where the herniated disc is poking in to the dural tube .... meanwhile, the dance goes on and we remain optimistic.

[eyedea81]

Stiff person syndrome?

[HylianFury]

wow this is creepy did it start like this ? or did it start small ?

[tambluetigger32]

it can take long time to get a dx. of dystonia need to find a good doctor. knows about dystonia

[NeneLindo13]

cervical dystonia 8 yrs now and i can relate to what is happening.

one thing though

never lose faith in your higher power

your friend

Nene Lindo

[bineuralboy]

Have you considered that it could spasmottic torticollis? Aka cervical dystonia, his ticks augmented by the fact that he has both resting and action tremor would be a good indication that the basal ganglia could be the culprit.

[CATZscamp]

Prayers for Bill..is it a variation of Parkinson's?? There are many.

[cross10ksu]

did it start very small, like in the back of the legs and knees. then move to the upper body. because i have twitch in my theighs, calfs, shoulders, and arms. but they are really small and last for maybe 4 - 5 seconds. i have not seen a doctor yet, but i am kinda worried... i feel really bad for him, and hope it will stop. its painful for me to watch this =(