What are the tests for EDS and Tethered Cord Sydrome?

February 4, 2008

So far I have not had a lot of very informed decisions with the

medical professionals I have. My doctor sent me to the neurologist a

few months back to be tested for EDS and the neurologist said he has

no clue how to test for it. I had told the doctor that I thought I

needed to see a Rheumatologist but he said no, it was a neurologist

who tests for that. This neurologist also claimed he knew nothing

about ACM.

I also seem to have all the signs of the Tethered Cord Sydrome. I am

tired of feeling this way. I have been diagnosed for about 9 years

with ACM which was a 12 but now has gone down to a 5 but I had

symptoms of all this as a kid even. Doctors were perplexed that I had

so many nerve problem issues, headaches and were constantly amazed at

my poor reflexes even then. I have been told I have Degenerative

arthritis, spinal stenosis, ACM. and a score of other things. Had

two doctors say they thought I had MS. ( We know better then that!)

Oh and just a few months ago I was told I have fibromyalgia. Good

grief, I am not going to knock any doctors but you would think that

they could at the very least look up the symptoms for ACM right?

I was having drop attacks but have not had any in a few years but I

feel I am on the decline again and all I get is a smile and more BS

from the doctors who claim at least that " they do not know. "

I am not here to bash doctors but how long can a person go on this

way? I have help come into my home to get things done like vaccuming

etc. cause I can not do it. I would MUCH prefer to be well enough to

do it myself!

OK, I am kind of down but not defeated yet but would like some more

info from everyone on the next steps here. Not sure I even want

surgery any more. There has to be consistancy in their oppinions

before I will feel safe enough to let them do more surgery and I

already have had one neurosurgeon say I do not need it two days

before a neurologist said I do. The neurosurgeon also said he would

send me to another neurosurgeon who would do the surgery if I wanted.

Sheesh, I love to deal with people who are sure of themselves!

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