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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS). |
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06-05-2008, 02:19 PM | #1 | ||
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Hello Everyone
This is my first post here. I am waiting for results from some blood work and just hopped on internet once again looking for info. My biggest problem is balance. I cant go up or down stairs w/out holding the railing. Doesnt sound like much of a problem but it is. Also cant stand on a chair to change lightbulb or anything get the feeling Im falling. Just found out I have nerve damage in my left hand. It is weak and kind of numb which lead to some kind of nerve test that showed damage. Had blood taken to test for diabetes, lyme disease, autoimmune dsyfunction, and some other stuff. Have had mri's. eeg, vestibular testing, hearing and eye tests. Nothing comes up. Only thing I have been diagnosed w/ is RLS. Just wondering if anyone else has similiar experience. Also cant see at night to drive. |
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06-05-2008, 02:30 PM | #2 | |||
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Co-Administrator
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Hello,
Do you have any other odd symptoms even if you think it's not related? What kind of work have you done? Any accidents, falls or whiplash type injuries, ever? Any Neck or shoulder pain or discomfort? If so have you had an xray or MRI of your Cervical spine?
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06-05-2008, 02:41 PM | #3 | ||
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Quote:
Thanks for your response. No falls or injury of any kind. No pain or discomfort either. I have been going to the doctors for about 2 years. I have had mri of my head and neck not cervical area? Sometimes I get the sensation I am falling when Im not. Like when you are just starting to fall asleep. Only when Im still. I also get some kind of clonic jerks (forget the name its been so long) when Im still also. I cant really think of anything else. I havent been pursuing this for a while but the nerve damage kind of started my curiousness up again. Waiting for the blood tests then they said maybe doing a lumbar puncture to test spinal fluid. That doesnt sound like much fun. |
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06-05-2008, 04:46 PM | #4 | ||
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the lumbar puncture to test spinal fluid is not too bad. I have had one done by my neurologist, and it was painless. The last one, also done by a doctor, was a machine guided puncture...that one was more painful, but nothing worse than a needle type pain. It also failed to seal, so I had to return to the hospital to have a "blood patch"...in which the same doctor injected blood back into the original site, to stop the leaking, and to stop the headache. And that went very well.
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06-14-2008, 02:06 PM | #5 | |||
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experiences can vary so much!
I'd had 3-4 over the past 20 years, right in the doc's office and had no problems at all. Then, I'd had one recently, done by a neuroradiologist (her needle guided by a picture of my spine) and had problems for over two weeks. I'd had daily severe headaches, pain at the site the needle was inserted, etc. (I did not need a "blood patch.") Theoretically, the "guided" LP should be less problematic than the non-guided ones? However, I had read an article recently that had asserted the cause of ongoing pain is they type of a needle chosen by the doctor to do the LP? Who knows, for sure? (The article had said neuroradiologists tend to use the needle design that creates the least amount of ongoing pain? I'd had this type of a specialist do the procedure I'd had the most pain from. ) There are likely many variables as to why somene does/does not have any additional problems with headache, etc. There's a lot of info. on the net about all of this, for sure. However, I am also older now and have much more arthritis in my spine, etc. So maybe this is the cause of my more recent experience with ongoing pain from the procedure? Many have this procedure withoiut ongoing problems though. It's great you are asking questions as you anticipate various testing procedures, so you will have some idea of what to expect. So many people have many different experiences with this procedure. It would be impossible to accurately predict yur own response to this procedure, as the same person can have a different experience at a different time. Good luck with your testing! I hope you can find some help soon! |
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06-27-2008, 12:18 PM | #6 | ||
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Have you had any news on your diagnosis? I am also suffering from dizziness like you describe. I don't feel like I'm going to pass out and I have no spinning, but I feel like I am going to fall down. Dr.s seem to be confused by that. I guess b/c it doesn't fit "dizziness" as in leading to fainting or "vertigo" as in feeling that you or your surroundings are moving when you/they are not. Just wondering if you have any explanation.
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07-17-2008, 10:04 AM | #7 | ||
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started having dizziness 5 years ago. My balance is really bad. I went to many doctors with no resolve. I finally went to Duke in 1/08 and was diagnose wih cerebellum atrophy-Ataxia. I have been doing my my research on Ataxia. It is caused by a vitamin E diffcient, cancer, genetic, or infection. The test for vitamin E and genitics came back normal. I do have cancer but it is in remission. So the infection is the only thing left. So then I search on Ataxia and infection. It said that a CSF Protein should be doneto rule out infection. It is done from a spinal tap. I went back and reviewed all my test that i had done. Back in 09/05 I had this test and the result was 46. Normal range is 15-45. Someone had written on report to call pateint. Noone ever call me. I never knew this. The report said it should run a low number and high number could mean infection. Not only was my high but out of range. just discover this a few weeks ago. What all this means is DON'T TRUST YOUR DOCTORS TOTALLY. i am now totolly disable. If treated with antibiotic in 05 this could have been prevented. I have now started to know my test better. I would suggest a CSF test.to rule out infection. Hope this helps.
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"Thanks for this!" says: | dizzie lizzy (07-28-2008) |
09-01-2008, 05:13 AM | #8 | ||
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[QUOTE=diagnose?;293618]
Hi Just new to this site and read your symptoms. I have had condition for 4 years couple od MRI's, CT scans and Spinal Tap revealed nothing much except for shinkage in the cerebellar. Went to the gym strenghened legs and co-ordination. Can't write but trying with Occuptional Therapist help still literate and Dr's don't know! Makes me mad don't feel sick or look unwell but I see Neurologist every 6 months. I need to work and divorced 3 years ago. I don't know the answer but to keep on be strong. I too would like to communicate with other sufferers. Sandy |
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07-13-2009, 04:54 AM | #9 | |||
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Quote:
Malabsorption of vitaminE can cause those problems with balance and vision. |
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10-22-2009, 01:28 PM | #10 | |||
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I have to climb up and down holding on to rail. But have a fear of going down since I have fell quite a few times going down.
off balance a lot of times,walking I weave so I am not walking straight at times my first doctor called it as meds & equilibrium. have a new neurology doctor and seems very good, and said I have ataxia the very first day and cannot stand up on a chair without falling. |
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