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Going through testing for MS with Questions - Please Help
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MichelleBaker76 posted:
Thank you for this discussion forum, I am grateful to have found and been able to read up a bit.
For the last several months I have been undergoing testing for MS.
Here are my symptoms:
Nystagmus, Numbness and weakness in full right foot traveling up to my knee, and numbness in half of left foot, vision tracking issues combined with blurred vision, balance issues (do okay most of the time walking will occasionally have to catch myself, but when stopping and turning I have to always catch myself, intimacy issues, emotional outbursts, severe exhaustion, hypersensitivity in all lower extremeties.
Here are the tests I've had done:
XRay followed with Steroid Pac; Physical Therapy; Femaile Exam; B12 Lab - Good; Neurological Exam; MRI Brain - Lumbar (2 Lesions one on lower left Tspine, and one on left cerebellum); Lumbar Puncutre - Negative; Lord knows how many labs I've had done - all in normal.

Starting to feel like I'm crazy... Neuro says it's like a needle in a haystack and that he may just need to recheck me in 3-6 months. I understand I"m being impatient, but 3 months (I know people suffer years ), and I just want answers, whether MS or not, the diagnosis doesn't matter to me. My symptoms grow with each day, minimal relief from neurotin.
Not sure if should wait the 3-6 months or seek 2nd opinion. I hate to waste another drs' time without an official dx. I do live in an area where there are several MS institutes...
Any help would be greatly appreciated. As I said not sure where this is going, only light my dr has given me is that I have representing symptoms of MS and has not said what or if any else it could be, however with lumbar puncture negative there's not much more they can do right now...
Thank you so much in advance...
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hackwriter responded:
Dear Michelle,

As you mentioned, it is a waiting game, there's just no getting around that. You could wait the 3-6 months and get retested--and then if your neuro is still undecided or rules out MS, you could seek out that second opinion.

If you decide to seek that second opinion now, you might have to wait 3-6 months to see the new doctor, get new tests scheduled and then wait for the results. Either way, you'll have a wait.

As far as the negative LP goes, some neuros will not put a lot of emphasis on the LP and will dx you based on your history, clinical exams, and MRIs. The LP is part of the overall diagnostic criteria and helps confirm a suspicion of MS, but no single test is definitive. Most of us have a positive LP, but approximately ten percent of MS cases never test positive for O-bands. The disease is indeed very hard to diagnose.

What you decide to do is your call, and keep in mind that there is no wrong decision, merely a choice. Eventually you will get some answers.

Kim


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