first intro

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first intro

Postby janan » Wed Dec 09, 2009 5:28 am

new to this and still trying to find my way around he site...
54 years old, UK female. Have had neuroloical symptoms for around ten years now, steadily getting worse, but no definite diagnosis. Am finding it very difficult to find out how many others are in a similar situation??
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Postby jimmylegs » Wed Dec 09, 2009 6:03 am

welcome j, you are not alone in your circumstances by any means. what tests have you had done so far, and what were the results? what symptoms are you putting up with on a day to day basis?
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Postby janan » Wed Dec 09, 2009 7:07 am

had 2 lumbar punctures - no oligoclonal bands. Reluctant to have another 'cos headache after the last one meant lying flat for 3 months... Also had several MRIs over the years, the last one about a year ago, involved about 2 hours in the scanner. Results of these are "inconclusive" according to my neuro. He says there are some anomalies showing on the scan, but no real evidence of MS lesions & could just be vascular damage not unusual at my age (!) He sent me to see another neuro early this year for a second opinion. He suggested it could be a post viral syndrome or a variant of chronic fatigue syndrome... My regular neuro says he still hasn't ruled out MS even though after this amount of time with no evidence from scans or lumbar punctures its looking increasingly unlikely.
Long list of symptoms include muscle weakness and stiffness, pins and needles, numbness, pain, balance problems.These all come and go from days to day - the trend over the years being that the symptoms are increasing both in frequency and severity. The worst symptom that causes the most distress is my "foggy head" which makes me feel completely disorintated as though I have been drugged... I also have chronic fatigue virtually all the time now to some extent.
The frustrating thing is that without a diagnosis, even if new treatments become available, I'll not be considered for them.
Just realised how much I've written...
you did ask!
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Postby janan » Wed Dec 09, 2009 7:10 am

PS thanks for the links. Am already a member of MSRC so their site is familiar, but the others are new to me.
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Postby jimmylegs » Wed Dec 09, 2009 7:48 am

hi again janan, i imagine you have heard of CCSVI, or am i wrong?

vascular 'anomalies' and ms are being investigated as strongly related.
new studies are in the works. check out the 'stickies' in the ccsvi forum to learn more.

in the meantime, all those nutrition links in my signature hit on the basic things you can do to combat ms without a diagnosis. it's even better if you can get a doctor on board to help you get some unusual bloodwork done.

some things that can be useful to check with ms-type symptoms include:

vitamin b12
vitamin d3
uric acid

also good to look into:
vitamin e
polyunsaturated fatty acids

even when results come back 'normal' i can tell you in quite a few cases whether your levels are in the 'healthy control' part of the 'normal' range, or in the 'ms part'..

it's good stuff to know, with links to all kinds of different conditions, by no means just ms!

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Postby Mike56 » Sun Dec 13, 2009 12:07 pm

Hi Janan,
53 year old male here. I believe there are quite a few people in here who haven't got a definite diagnosis yet, myself included. I've been definitly diagnosed with a demyelinating disease, possibly MS, after multiple blood tests, ct and mri scans, a brain biopsy, etc, etc....but unlike you, my issues just started this past February.
Over the past 2 weeks I've had a spinal tap, more blood tests (11 vials taken) evoked potentials (optic, auditory and spinal cord), an opthomology appoinment, chest CT (I don't know why), and a Gallium scan. I'll get the results of this batch of tests next Friday from my GP.
If no definite diagnosis can be made, my next MRI is scheduled in March 2010, and Neuro appointment in May. This latest bunch of tests were orderred by my new Neuro at the UBC MS clinic in BC, Canada, so at least I'm in good hands now.
Good luck to you in your search for answers! Hang in there, and don't be affraid to ask for support from the good people you'll find in here.

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