some ideas for next neuro visit

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some ideas for next neuro visit

Postby pinda » Tue Sep 14, 2004 12:13 pm

Hello to everyone. My first time to ask a question here. I saw our family Dr. yesterday for results from last MRI of brain and it has not changed from one 6 months ago. Have had one MRI of spine and lumbar puncture, both OK, first MRI of brain showed two lesions but inconclusive for MS, (seems being 57 it could just be my older brain), overactive reflexes, dropped foot, muscle twitches, burning sensations, numbness, balance, heavy legs, and walking problems so use a stick for any walks, fatigue, etc. See neuro the end of this month and want to have some questions to ask re other tests, what else this may be, and where to go from here. Been over 2 years of tests and evaluations and been told I have something neurological going on but they do not know what. Doing yoga, swimming and walk as far and the best I can to keep myself active and sane. Seems to be progressing slowly and no real remissions so would like to be doing something to stop the progression. Also, does anyone know if there should be changes on MRI after 6 months to show MS? Thanks for any suggestions. Linda
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Postby Shayk » Wed Sep 15, 2004 8:12 pm

Hi Linda

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.

Sharon
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Postby pinda » Thu Sep 16, 2004 11:27 am

Thank you for your post Sharon. Will look into alpha lipoc acid. I have a non invasive breast cancer, LCIS, which is estrogen positive so will not be taking estrogen in case it could change the cancer. Have had the things you mentioned ruled out for the cause but not sure what else the neuro is looking at. Want to question him on that but hope to have some ideas before. I find it hard to think when there and my husband helps but we both need to be better prepared this time. At least the neuro sees us for 45 min. or l hour and does listen but has not talked about what else he thinks it could be. When I have asked he says it is for him to worry about not me. Well, I'm worrying anyways. Guess I need some more control with what is going on. I had the polio virus when 5 but no paralysis so have seen the Post Polio Clinic here and they are the ones who wrote my family Dr. to start the ball rolling on seeing a neurologist for other causes. Still may be Post Polio, Post Polio Clinic has suggested MS and Post Polio, but neurologist does not seem to think so and so far not wanted to talk about. He did seem some what dismayed last visit that nothing is showing up to account for the changes in me. Checked my over and ended up with his head in his hands for a few minutes. A bit disconcerning but at least I know he sees things but does not know what. I'm thinking he may say come back when more changes or in a year. Not good enough. Concerned this is doing permanent damage. Guess I'm venting, thanks for listening. Hard on my husband to always be my sound post. Not much he can do to help re my mobility and I try not to burden him to much with my thoughts. Humour and laughter help a lot so we do things to bring out the laughter. :) Linda
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Postby Shayk » Thu Sep 16, 2004 5:24 pm

Linda

So sorry to hear of your history of breast cancer.

My head must have been out to its proverbial lunch last evening. :roll:
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.” :roll:

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. :)

Sharon
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neuro apt

Postby pinda » Fri Oct 01, 2004 11:54 am

Hi Sharon. Thank you for the info. I looked at the two sites and was interested to see the one about late onset of MS. Maybe not that unusual. I had seen my family Dr. before the Neuro Dr. so knew the last MRI had not changed and inconclusive for MS. The Neuro checked me for any changes in reflexes etc. and found small changes. I told him it seemed to be slowly progressing and the check up confirmed this. He took me for a walk up one flight of stairs, the length of the next floor, down stairs, length of floor and back, then checked signs a second time. No changes,hedid not walk me far enough. I did notice how my body would be ahead of my legs when he asked me to walk faster. Legs become heavy and do not seem to receive the message as fast as the rest of my body. I figured out why I do not like to walk fast, hard to keep up to myself and easy to fall. Use a stick when walking any distance now. Helps my balance too. Talked about what I could have and he has ruled out most things. Still looking at MS but not enough info to diagnose. Does not want to say it is when may be something else. I agree. He also said it is neurological and saying what kind of illness,is just a label, still have the problems,no matter what. Did ask re bacterial and he said I would have had severe symptoms at the onset. Also mentions how all the known medications for MS do not do too much but could have serious side effets so not to look at unless you do have MS and could benifit from any good effets. I have felt the same and good to hear he would not be pushing me to take them. I would have to look at very closely before thinking of taking. See him again in 6 months unless I have something else happen. Will be seeing the physiotherapist at the Post Polio Center to check for any changes from her once over last year. She feels she can help me find ways to cope no matter what I have. The yoga and swimming are also helping and walk when ever and as far as I can. Will be doing the 1 K of the Run for the Cure this Sunday. Have been doing for about 8 years now and had to change from the 5K to the 1K last year. Hope to do the 5k again next year. :D Anyways, I do feel better after seeing him and talking about my concerns. Not having a label is not a concern when he sees I do have problems and acknowleges it is neurological. He does not expect me progress quickly and I should do all I can do. Only thing he said not to do is gain weight, harder on your body. That is so for all of us healthy or not. The message was to keep as active as I can and not to worry. Stop when my body says to, rest, and keep on. Putting this down has helped. Thank you for listening, Linda, Cloverdale, Canada
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