This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm 54 and was very surprised to find myself diagnosed with RRMS at 52. I doubt that I'd had it for more than a few years before that, but who knows.

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 :!: ."

Hi, flora!

Hey.....all I can say is I know EXACTLY what you mean!

Where does one thing leave off and the other begin?

Deb

Hi Flora. I am 57 and undx but probable MS. This all started June 2002. My age is a factor in difficulty with dx. Have 2 lessions on my brain but could be my age. Second MRI 6 months later had not changed but I had. Seems to be a slow progression and go back to the Neurologist in April. May be asking for a second Neurologist who knows about MS and Post Polio. I had the virus when 5 without paralysis. The Neuro I'm seeing does not think it is involved because of overactive reflexes, would be inactive with P.P. I would like to see someone who knows about Post Polio to rule out for sure. Have been to the Post Polio Clinic and she thinks I may have both. Oh joy! Has been a long journey with the dx of a neurological problem but not sure what. I do OK but would like to know what is going on and if it could be helped by exercise etc. Not too keen on meds available. Seems there are a lot of problems with maybe some help. The Post Polio person I see is concerned I am doing too much with yoga, swimming, and walking when I can, because this could damage my muscles. If MS I need to do what I can to help my muscles. The opposite. I'm still doing what I can. Hence I am down today after a few days of shopping for Christmas, yoga, etc. Hard to get out of bed, think, walk, move in general. Nothing specific just everything goes. More numbness, and twitching too. Oh well, just wanted to talk in this forum for the older MS and undxprobableMS. Thanks Flora for suggesting.
Linda in Cloverdale Canada

I'm 56 and have had MS for a while, years, who knows how many. I've also had stomach problems for 7-8 years, less than MS. I'm looking at a Crohn's dx soon. My 87 year old mother has had Crohn's for 35 years. I know how horrible it is. I think it is worse than MS, at least mine is. I've dealt with the MS just fine so far but the Crohn's is another story. There are overlapping symptoms in both so I do have trouble distinguishing them. I live in New Mexico where medicine is in the dark ages, or is that everywhere. I had Blue Cross for a long time but now have a junk insurance that I hate. I'm in a pretty bad mood right now because both are acting up. When my immune system isn't attacking my brain, it attacks my gut. Sorry for the rant. I hope you guys are still around and can cheer me up.

Hello Flora and all! So we have an adder to the saying "midlife crisis"! I am pleased (?) to know that I am not the only one. My first clinical exascerbation was in Feb. 1999 with optic neuritus but the only reaction that I got out of urgent care was to go see an optometrist because they could check for blood pressure problems in the back of the eye. I dutifully went and the "professional" optometrist proceded to lambaste me for being practically blind. He exclaimed how he could not understand how I could ever have gotten a drivers license because it looked like I'd been that way all my life. This verbal abuse actually followed my explaining to him that I had just woke up this way that very morning and that yesterday I could see fine! Guess who never got to see me again! Any how the optic thing happened again in mid 2001. Again I got the same response from urgent care but a much kinder response from my new optometrist. Then in 2002 I got dizzy and tingly with my ears doing weird air pressure things. This time I got my primary care physician involved because there have been many coronary bypasses in my siblings and I thought this is where I am heading. By the time I got in to see her (not the usual 2 month wait) the side of my face was completely numb. I got sent for an MRI but was not DX'd with MS just a type of collagen vascular disease. A blood test showed Rheumatoid arthritus. So I carried on thinking that was what my problem is and it worried me that it was in my brain. Getting my annual in 2003 I mentioned that the numbness was still there. This time a neurologist was added to my folder. Another MRI, a spinal tap, and my nero was still not convinced although this time the MRI report said MS. I then recived a battery of tests. Ultrasounds of my carotid artery and my heart which thankfully showed no plaques. The rest of my family gets plaques in their arteries and I get plaques in my brain. After the 3rd MRI both my Doctor and my neuro told me that I had MS and should start thinking about medications. I saw my neuro in Feb this year and told her I wanted Tysabri. She had never heard of it. I told her all I knew and asked that she check it out for me. A week later I got a voicemail from her saying that if I wanted it she would set it up for me. That was on Feb. 28th the day the product was recalled. So now I am hoping for the best option to surface. I don't want needles and I don't want to suppress my immune system which is in effect what antibiotics do as well. So I shall carry on with a good diet a sense of humour and believing that I am blessed. I still work full time, go to nightschool and do volunteer work, although I am easing up a little on the last two. I think that we are the lucky ones when we don't receive this burden until our later years. You talk about morbidity and I guess we come to expect to see the light at the end of the tunnel get nearer as we age. But I feel so very deeply for the young ones. This is a tragedy that must have a cure come to the surface soon.

Hi mouse:

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.

Hi to everyone. Just wanted to post a hello to the golden years group. Have not posted for awhile and seems most others have not either. I'm still undx but after feeling somewhat better in March after 21 months of slow progression I became very ill with a virus and all my symptoms came back very strong. This lasted about 2 weeks and subsided to where I feel quite well again. Still some problems but able to do much more again. Any one else have a long time with slow progression and then seems to go into remission? Seems it is not unusual for symptoms to come on strong when ill so maybe this shows it is MS. Was starting to think maybe not when improvement in March. Neuro says neurological but not enough info to say MS. Will see him again in Aug. so will ask what he thinks re possible remission etc. I was still not doing well when I last saw him in Feb. Have a question re feet. My toes grab all the time to help my balance and big toes stand up. Big toes do not seem to be working as they should. Doing some physio for my neck and had her look at my feet and she saw a few problems which may be neurological and creating some of the balance problems. Gave me some exercises to try and correct. My toes are all going side ways so she suggested spacers between my toes, tried cotton last night and spread them for awhile but reverted back. Will try doing for while. l also have flat feet and now collapsing more inward which is creating problems. Seems to be my stiff claves pulling things down. Trying some exercises for that too. Have some orthotics I got last year and do not wear now so told to try again. Seems this is all part of the neurological problems I have plus how my body is anyways. They do not help each other. Anyone else have problems with there feet or notice they look different now? I do theraputic yoga once a week and also water works swimming to try and help balance, walking, and keep in shape best I can. This has become longer then a hello. All the best to everyone and hope to see more posts here in the future. Linda

I'm in a long slow progression right now and would love for it to go into remission. My original neuro who diagnosed me wouldn't write it down anywhere for fear of my losing insurance. That was a long time ago and insurance issues are different now but some doctors don't even know that. I had to explain "pre-existing conditions" to my last GP. Your neuro may have some motive he thinks is valid for not officially diagnosing you. Maybe you should ask him. My toes don't seem to be as active as yours but they do cramp sometimes, especially when driving. They also "hang on to" the floor in the shower. I wish that was my biggest problem. I posted in another topic that I am taking a sulfa drug for a UTI and it is killing me. My mouth is one big cold sore and my throat is so sore, I can't eat. Today the doctor called and told me that the sulfa drug will not work on my infection and I need to take something else. Luckily I had some of one that would work (I keep everything) but it causes other wonderful side effects. Has anyone conquered the dreaded UTI?

Hi again. Just lost my last post. Found out I could not move from here to look at your post. Have to send first I guess. I am not very literate re postings etc. I have some questions re your slow progression. How long has it been? Have you had any remissions? If so, how long did the remission last? Did you have the same problems but less if in a remission? Mine are less but increase if I do too much. Still not as bad as it was though, except when I was ill for 3 weeks with a virus. Sure would be nice to know what will happen next so one could plan how to do their day, week, year, life. Do you take any medications? I'm not on any but do take Vit.C, Fish oil every day and Vit. D twice a week. Will probably stop the Vit.D when bottle finished. Not happy with problems it may have, can be toxic if you do not need. Summer now so should not need extra. Have a friend Who takes Cranberry tablets to help keep her UTI away and lots of fluids. Off to swimming, take care, Linda

I write my posts in a word processor and cut and paste onto the board after. It helps in a number of ways including going back and forth between your own post and one you may be responding to. It also helps with my terrible spelling and if you have to stop before finishing or have a crash, you don't lose your post. My current "slow progression" started in Dec/Jan with no remission although I feel better some days than others. I never even try to do too much. My UTI seems on the way to recovery with the new antibiotic, although I caught a cold in the meantime. My doctor actually called this morning to see how I was doing (wow) and I went to her office to get a quick strep test to make sure the infections weren't just running rampant. That was negative so some good news for the weekend. Cranberry never seemed to help me but I may try again. I want to start a multi-vitamin but want to pick one that doesn't have too much of anything. It doesn't seem good when you read the ingredients and there is 27000% of the daily amount needed of something or even 500%. Well, off to cut and paste.

Thought I would put this question to the older group because 57 and have asked questions here before. I'm still undx after 2 years, 1 spinal and 2 brain MRI's. Just saw my family Dr. to talk over what I could be doing to help myself and she went over my last MRI of my brain. Shows multiple lesions not changed from the first MRI 6 months before. Also had the # 11 for lesions, I was told 2 lesions after the first MRI. May mean 2 not eleven but multiple sounds like more than 2. My Family Dr. felt the same. Also said not conclusive for MS. What do lesions look like for MS? Different than other lesions? If eleven does that mean something is going on or my age? What else would show lesions? I have been tested to rule out things but maybe missed. Neurologist says it is neurological and central nervous system but no answer to what it is. Did talk about a second opinion but do not want to lose this Neurologist because he is known to be one of the best for MS and gives you time when he sees you, answers questions and explains everything. Have heard stories of other Dr. that do not help much. Will ask questions next visit in Oct. so any ideas would be welcome. Want to be prepared. Thank you for any help, Linda

Hi Linda

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.

Sharon

Thanks Sharon. I'll check the site out. Have looked at before but just browsed. Yes, our symptoms from age related things overlaps into what ever else we have. Hard to tell sometimes. Will also try talking to the Neuro. when I see him in Oct. re the MRI's and tests I have had. Has said nothing else shows, not B-12, lymes etc. but be good to know what has been looked at. Linda

Hello Linda,

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)

Hi Sharon from Colorado--

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.

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



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

Sharon (Virginia)