Sorry to hear you're having such a time with your symptoms and getting a diagnosis. I'm really not the best person to answer your questions but thought I'd at least chime in since I was diagnosed with MS at the age of 57.
In retrospect, one of the things I would do would be to have a clear list of possible diagnoses that can mimic MS. Then, you can ask the neuro what's been ruled in, ruled out, and what other diagnoses he/she will be considering. There are lots of things to be ruled out before a diagnosis of MS can be made. A B-12 deficiency and Lyme Disease are just two of many possible diagnoses that immediately come to mind but I know there are a lot more. I hope people with a lot more expertise than I have will add to the list.
In my case the neuro thought MS was so unlikely that I had to ask him to rule it out. Unlike you though, once I had the MRI I had lots of lesions in all the right places. My presenting symptoms were very similar to yours and my spinal tap was normal.
From what I've read about MS this year I think it's entirely possible there wouldn't be any changes in your MRI in a 6 month time period. Because MS symptoms don't correlate real well with lesions, my neuro isn't going to do another MRI until he thinks it's needed to make treatment decisions.
The yoga, swimming and walking are great. You might want to also check out alpha lipoic acid (it's over the counter). I'm taking that for the burning, numbness, etc. and have found it works quite well. It is also going into a Phase II (I think) clinical trial for MS.
And, if your health allows and it's "timely", you might want to check out hormone replacement therapy. Estriol is a form of estrogen that showed some promise for RRMS in a very small trial at UCLA and there's a thread here about that topic. There was also a recent news article here on estrogen and MS that was promising.
Be sure to let us know what happens and take care. Here's hoping you get some answers sooner rather than later.
So sorry to hear of your history of breast cancer.
My head must have been out to its proverbial lunch last evening.
A great list of other diagnoses to consider can be found on pages 21-23 of the Boston Cure Project’s Multiple Sclerosis Primer: www.bostoncure.org/downloads/bcp-ms-primer.pdf You might come up with a whole list of questions after checking that out.
And, if you check out www.mult-sclerosis.org/news/December2003 for an article on Highlights from the 128th Annual Meeting of the ANA, you will find information about a study on late onset MS that you could take to your neuro’s appointment.
My presenting symptoms were similar to some but not all of those reported in that study. The most common symptoms (52 patients with first symptoms of MS at age 50 or older (mean age of onset, 57.6 years) were paraperesis (difficulty moving legs, leg weakness, etc.), sensory symptoms, and gait dysfunction. Spinal lesions were very common “much more common than is typically seen in younger MS cohorts”, and “gadolinium-enhancing lesions were present initially in 8 patients only.” I didn’t have any spinal lesions but I did have plenty of those enhanced lesions (more than 10). They characterize us oldies as an “interesting subpopulation because of our unique presentation.”
If you really want to pursue something before your neuros appointment because you think it’s MS, two things you may want to check out are low dose naltrexone (LDN) and minocycline. Both are FDA approved already for other things. There’s great information on the This MS site on LDN and also on minocycline. The trial for minocycline is actually happening in Canada so you might be able to convince your primary care doc to give you a script if you decide to pursue it. Also be sure to read the thread started by Arron, the moderator, “Important Page to Read”, the Chlamydia thread and check out the information in Regimens.
Interesting that you mention the polio. I was a "polio pioneer" for the vaccines and also wondered if my diagnosis was related to that.
Anyway, I hope this information is a bit more useful. Do take care and keep exercising.
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