Fortunately, my MS hasn't directly affected me too much so far. (The meds I tried did , but the disease itself, not so much.) I always have a little numbness on the left side of my body, moreso when I'm real tired, and I run out of strength pretty suddenly sometimes if I don't pace myself and avoid heat, etc. Typical stuff mostly. But even before MS I was using a walker at times, because of spinal problems, so in that way, MS hasn't been such a hard adjustment psychologically. So far .
All of which touches on one of the reasons I had wanted to find a spot on this site where older MS patients could get together- because of the growing list of "co-morbidities" that many of us have, and the challenges and difficulties that situation can present.
Of course, I know plenty of people older than myself who are in great health and have nothing at all chronically wrong, and good for them. But I also know (from working for a family doc) that there are a lot more of us who had already compiled quite a list of injuries and various chronic diagnoses by the time our hair went gray, along with that correspondingly growing list of meds and/or supplements for same.
On the plus side, hopefully we've also had ample time to develop a strong sense of self, a great sense of humor, a balanced spiritual center, a great sense of humor, and an awareness that there are many people living much more painful, more difficult lives. And a great sense of humor .
But regardless of one's wisdom, personal resources or coping skills, adding MS to a medical file that already reads like the Old Testament adds yet another unwanted dimension to a very complicated picture. Sometimes it's more puzzling, than anything, trying to differentiate MS symptoms from similar symptoms possibly caused by another co-morbidity. Do any of you guys have that problem?
In my case, since before MS I have been dealing with, among other things, severe multi-level spinal stenosis and facet joint disease; muscle spasms, weakness, and numbness in the lower body secondary to the spinal stenosis; extreme ongoing sleep deprivation secondary to constant pain; cognitive problems secondary to the sleep deprivation; arthritis and various old injuries; menopause; macular degeneration; migraine; etc., etc. Many of these symptoms overlap with MS symptoms, which bugged me more after I was first diagnosed, but as time went on, it seemed less important to sort it all out. I guess I got to a point where MS became my "default" reason for most everything, unless there's a reason to rule it out, so I just don't usually sweat it. Usually.
But once in awhile, something new and weird will happen physically, and I'll think, "OK, now I really need to pay attention and figure out whether this weirdness is from MS or not. Because otherwise, I'm having a freaking stroke ."
Linda in Cloverdale Canada
I'm really glad someone posted on this thread and got my name out of the main listing. I've been reading here for a while but this site makes me feel really stupid. I thought MS caused cognitive malfunction but these people are so smart and articulate. I don't take any drugs. Was diagnosed 14 or so years ago and most of them symptom free. Now it is hitting the proverbial fan but I still think I made the right choice for me. I had 14 years to raise my son and deny my illness existed. I've written private messages to a few here but only heard from flora - she is very sweet. If you'd like someone to talk to (I sure would) send a pm and we can talk. I need to post more but feel intimidated by these folks although they are very supportive.
I’t’s really too bad you’re still uncertain about whether or not you have MS. Of course, hopefully you don’t.
The Boston Cure website has a Multiple Sclerosis Primer that I seem to recall has a long list of other conditions that need to be ruled out when an MS diagnosis is being considered. You might want to check that out. Once you’re at the site you can view and download it as a pdf file.
For sure I know that Vitamin B-12 deficiency and Lyme Disease are two of the major conditions that they rule out. I’ve learned though that there’s a whole host of diseases that cause demyelination and/or lesions. I would think that given our age they probably check for such things as strokes, migraines, etc. I seem to recall a minimum of 8 vials of blood were drawn after my MRI came back indicating I had “brain disease”.
Since your doctor seems so to be so willing to talk to you, a real plus, you might want to check out the list of other possible conditions and just ask him/her what’s been ruled in and/or out based on the tests that have already been done.
I really don’t know what lesions look like. I just know that I had a lot of big ones in locations that were consistent with the criteria for diagnosing MS. There is also an interview with an MRI expert on the Boston Cure site that contains some information. One of the recommendations is to have the neurologist go over your MRIs in your presence so they can explain them to you. It sounds like your neuro might be willing to do that.
If I think of anything else that might be helpful I’ll certainly post it.
You asked some time ago about toes, so far mine seem to be behaving themselves. I think it’s excellent that you’re swimming and doing yoga. I definitely think exercise and any form of relaxation and/or stress management techniques are beneficial for people with MS.
To everyone here, take care. Sorting out the vagaries of aging from those of MS is a challenge. There seems to be lots of overlap.
Did you have a spinal tap? I had two sets of MRI's, ECG's - neuro did not make the final diagnosis until I had the spinal tap which showed the OG bands. I was diagnosed in 2003 - the MRI's showed no inflammation or activity, but I did have two small lesions in the brain and two lesions in the spinal cord. The spinal tap was the test which confirmed MS.
I will be 62 years of age next month. The MS has probably been with me for more than 30 years - I am one of the lucky ones - my symptoms never became a health concern for me until ten or so years ago when the weakness in my left leg became more noticeable. Finally, it was a chiropractor who ordered the MRI's (actually the chiroprator suspected Charcot-Marie-Tooth/CMT - another crippling disease).
Even though my MS is not active, I continue to have some symptoms especially when I am stressed or tired. Many of the "researchers" on this site have posted about the progression of disability even though the disease has stabilized. I believe this is what I am experiencing now. So, for me, the current research on myelin repair is of extreme importance.
And, I digress - but, I want to say thank you to all those "researchers" on this site - Sarah, Bromley, Finn, Odduck, The Rev(where has he been lately?), Sharon(Shayak) to name just a few. All of you offer your knowledge, and your support to so many of us. And, to Aaron - many thanks for keeping this site as good as it is.
Sharon (from Colo)
I really appreciate your comment supporting my posts (?obsession) about hormones and MS. It all started when the very first advice I got about how to manage MS was to take estriol. It’s good you put the “researchers” in quotes because I have absolutely no scientific background.
In retrospect I also think perhaps I had MS for some time prior to my diagnosis. When told I had MS, my friends jokingly said, “At least now we finally know why you’ve been so clumsy and uncoordinated all your life.”
You shouldn’t discount your own contributions to This is MS. I printed out the information from the exercise study you posted. The fitness center staff now has me doing lots of “iso-strengthening” exercises.
You said you were most interested in remyelination. I think there’s a lot to be said for considering progesterone, even though there haven’t been any clinical trials on it yet in MS.
If you haven’t already read it, I’d highly recommend the book, What Your Doctor May Not Tell You About Menopause, by John R. Lee. It is mostly a book about progesterone. He’s a big supporter of progesterone cream. It’s where I first read about the possible role of progesterone in myelin maintenance and repair.
I think I’ve posted information about progesterone in the estriol thread, but this abstract says a lot, IMO.
Local sysnthesis and dual actions of progesterone in the nervous system: neuroprotection and myelination
The web site Women In Balance also has a summary of progesterone research to help assess whether or not it’s something you might want to pursue.Progesterone (PROG) is synthesized in the brain, spinal cord and peripheral nerves.
Although there are only a few studies addressing the biological significance of PROG synthesis in the brain, the autocrine/paracrine actions of locally synthesized PROG are likely to play an important role in the viability of neurons and in the formation of myelin sheaths.
PROG may exert its neuroprotective effects by regulating expression of specific genes in neurons and glial cells, which may become hormone-sensitive after injury.
Local synthesis of PROG in the brain and the neuroprotective and promyelinating effects of this neurosteroid offer interesting therapeutic possibilities for the prevention and treatment of neurodegenerative diseases, for accelerating regenerative processes and for preserving cognitive functions during aging.
I was stunned to learn I had no progesterone when I had my hormones tested. That’s apparently not unusual for older women. From page 82 of the book
In humans, estrogen production falls only 40 to 50 percent at menopause, whereas progesterone falls to close to zero when ovulation no longer occurs.
Vitamin B-12 of course also appears to be important to myelin maintenance.
I think we need to try to safely do what we can while we wait for the research. I'm definitely walking a lot better but the clumsiness and lack of coordination are still with me.
Take care everyone