Re: i need everyones help with this one please!!

[Guest guest]

I have left side cotortions of my left hand and foot.. not when i am doing what you said .. but i get the same things..

I hope this helps

Many blessings and a pain free day Please support Neurosarcoidosis society

[Guest guest]

Barb, I do have some twitching, from time to time.  Here's a test my doctor did and failed, and still fail to this day, close your eyes and touch your nose with your index finger, I can't do it, I can't find my nose, I told my doc that was a silly test and

asked him to do it, and he did it no problem,  That's when he said I had to see a Neuro, my NeuroSarc is dx based on symptoms, most, just about all my tests are neg, yet I can barely walk, I can't lift myself out of a chair, I can't lift my legs

up when lying down, heck or even sitting down.  My Neuro said I had multiple granulomas from the Sarc in my brain and spinal cord, based on my symptoms, yet my MRI's show nothing.  That is why this disease is so hard to dx and so hard to

treat, most doctors want something they can see!  but it doesn't always work that way. so show your doc what you can't do, not what you can do, and see if that helps? Good luck, Marla

 

ok if i take one finger and touch my right side of my neck or face , my face will spasm on one side. my right hand will curl, and all my muscles on my right side will tighten! could you check to see that this is part of neurosarcoid? just touch your face or neck and let me know.

all my tests are coming back normal so not sure what is going on! any thoughts?

[Guest guest]

Barb I have a lot of jerking and twitching, I have noticed over the years it happens to me the most when I'm slightly to moderatley dehydrated.. I think it is called kinestis not sure of the spelling.. It's a really bad feeling and sometimes it can hurt like an electrical shock..

Hugs,

Re: i need everyones help with this one please!!

Barb, I do have some twitching, from time to time. Here's a test my doctor did and failed, and still fail to this day, close your eyes and touch your nose with your index finger, I can't do it, I can't find my nose, I told my doc that was a silly test and asked him to do it, and he did it no problem, That's when he said I had to see a Neuro, my NeuroSarc is dx based on symptoms, most, just about all my tests are neg, yet I can barely walk, I can't lift myself out of a chair, I can't lift my legs up when lying down, heck or even sitting down. My Neuro said I had multiple granulomas from the Sarc in my brain and spinal cord, based on my symptoms, yet my MRI's show nothing. That is why this disease is so hard to dx and so hard to treat, most doctors want something they can see! but it doesn't always work that way. so show your doc what you can't do, not what you can do, and see if that helps? Good luck, Marla

On Thu, Jan 21, 2010 at 7:09 AM, BarbaraW <beautybarnweber (AT) yahoo (DOT) com> wrote:

ok if i take one finger and touch my right side of my neck or face , my face will spasm on one side. my right hand will curl, and all my muscles on my right side will tighten! could you check to see that this is part of neurosarcoid? just touch your face or neck and let me know.all my tests are coming back normal so not sure what is going on! any thoughts?

[Guest guest]

Barb, I also have a lot of jerking and twitching....... and I agree with ....

I have noticed that when it is the worst, I am a little dehydrated...........I am not

a real water drinker, so I have to force myself to drink it and I know I do not get

enough...........

Hugs,DarleneNS Co-Owner/Moderator

Re: i need everyones help with this one please!!

Barb I have a lot of jerking and twitching, I have noticed over the years it happens to me the most when I'm slightly to moderatley dehydrated.. I think it is called kinestis not sure of the spelling.. It's a really bad feeling and sometimes it can hurt like an electrical shock..

Hugs,

[Guest guest]

Re: i need everyones help with this one please!!

Barb I have a lot of jerking and twitching, I have noticed over the years it happens to me the most when I'm slightly to moderatley dehydrated.. I think it is called kinestis not sure of the spelling.. It's a really bad feeling and sometimes it can hurt like an electrical shock..

Hugs,

[Guest guest]

Darlene, Caffine is a major cause for my dehydration.. I know Tracie is "SCREAMING" Water, Water and more Water! I can't hardly bring myself to doing that myself.. However, if I must have a soft drink its the decaffinated kind, taste is the same.. but I try to Drink, decaffinated packets of Peach Tea, no sugar or caffine.. then I'm big on unsweetened, decaffinated tea.. There are ways to get some type of fluids down without caffine.. I just can't tolerate them.. So good luck and happy decaffineated drinking..

Hugs,

NS MODERATOR

Re: i need everyones help with this one please!!

Barb I have a lot of jerking and twitching, I have noticed over the years it happens to me the most when I'm slightly to moderatley dehydrated.. I think it is called kinestis not sure of the spelling.. It's a really bad feeling and sometimes it can hurt like an electrical shock..

Hugs,