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Re: Looking for someone that shares my symptoms...please read!

Re: Looking for someone that shares my symptoms...please read!

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Posted by Linda on November 08, 2000 at 14:40:33:

In Reply to: Re: Looking for someone that shares my symptoms...please read! posted by Dee on November 08, 2000 at 09:41:13:

: : : :
: : : : : I am 39, used to be very active. Aerobics instructor, I own my own fitness ctr. I started having problems 8 years ago. Neck pain, lightheaded, dizzy, headaches in the back of my head. I mostly went to a chiro. 3 years ago my chiro said get an mri, it showed a disc hernation at c5-c6. Did PT but things just got worse. I had a couple bad falls and got hit in head with a heavy ladder. Two years ago I gotten woken up with a very strong, electric shock feeling in the back of my head. I only get it when I lay down flat. I now also get vertigo, the room gently turns when I lay down flat and turn my head left. I also have muscle movement on the right side of my face 24/7. My arms and hands fatique quickly and my hands have begun to atrophy. I have been looking for answers for two years. I have had ear tests and surgery. The only thing found is a disc herniation with a large bone spur at the c5-c6 level. It is moderetely compressing the cervical cord. My neuro thinks that I should have surgery to remove the bone spur and disc but does not seem quite convinced that is causing all these problems. I have had all the blood tests, head MRI and Auditory Brainstem test. All neg. Because of the constant neck spasms, I am told I am only using my eyes for balance. I have been looking on the net for years to find someone with similar symptoms who may have gotten a dx. If you are out there please respond. Thank you this message board has been very helpful.

: : : : : Linda

: : : : Howdy!! Some of your symptoms in your hands and arms sound like they could be well related to the problems at C5-6. The head problems sound more like you have had severe head trauma. I have had similar experiences. I am now 51. When I was 9, I was hit by a car and sustained severe concusion and fracture on my head. Back then, all they did was shoot me full of Tetnus and ice up my head. They did not find out that I had crushed C4-5-6. After several really rough years in school, I pretty well recovered. Years later I had lots of headaches and bee sting sensations all over. It got better with using Dylanton. A few years later, I started having spells of numbness and tinglling alover. It got better with Nueronton. Recently my right arn has been going completely dead, and several times this has happened to my legs. Now, finally, they have found the problem at C4-5-6. I get surgury next Monday. If I am lucky, it will fix about half of my symptoms. I ccan certainly live with that. I feel that I have been very lucky. For 41 years, I have been very active, in my ignorance of the fact that my spinal cord is 75% pinched closed at C5. I have water and snow skied, skated, mountain climbed, driven crazy, played football, etc. etc. but I have never done any more damage to my spine. Monday, the surgury will eliminate the fear and the risk that I have been aware of for only a month since my neck was first diagnosed. I would suggest going for the spinal surgury first, and then see what, if any symptoms remain. Then start looking for some other problem. Go one step at a time. Eliminate one factor from the equaison of pain and suffering, and then see what else needs to be delt with. I will post the results of my surgury late next week. Good luck and get better!! JoHn

: : : Hey,
: : : Although you both have had traums to the neck area, was just wondering have you been checked for MS or ALSo?

: : : Dee

: : Dee: Thanks for responding. My neuro said my head MRI was neg. so no MS. He also said I show no signs of strength loss. I have been worried about als because I also get fasciculations. It's so scary, I try not to worry about it. My hands are starting to atrophy around my knuckles. If my new neuro says my neck is not the problem, then I will have to ask for an EMG and rule out als. I just havn't wanted to go there yet. Thanks again for your help. Linda

: Dear Linda,

: I know it is so scary. Did you know that sometimes lesions from MS don't always show right away? Well, you should get the EMG. Something is going on. Atrophy, but no strength loss? What is fasciculations? Never heard that before.
: I know it is so hard to go through all the tests and to get a diagnosis, but don't stop. I also wouldn't recommend surgery, yet, until you have had the emg and maybe more of a Neuro workup. Although you do have a bone spur and herniation, surgery might be an option, but the Doctor isn't convinced. How about a spinal tap and evoked potentials and blood work? Any possibility of Connective Tissue Disorders? Sorry I can't be of more help. Just a few ideas. Good luck and keep us posted.


Hi Dee: Fasciculations are involuntary muscle movement. I had been having it for a long time before I even told a doctor. I didn't know it meant something could be wrong until one day I was standing next to a friend who is a PT and I could feel my shoulder moving. I asked her and she told me my brain was sending the wrong info to my muslces. I have seen a rhuematologist who did a lot of blood work that came back neg. My sister has lupus. You are right, I will not have surgery unless the surgeon is sure it's the cause of these strange symptoms. I'll keep you posted. Thanks for your support. This board has been very helpful. Linda


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