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Wed Aug 1, 2012, 06:21 PM

Call out to MS sufferers on DU. I am a sixty year old male diagnosed with late onset

relapsing MS two years ago. I would be very interested to hear from other MS sufferers
regarding their experiences during diagnosis and also the types and frequency of relapses.

Also what medications you are using and side effects.

For any replies I'll share my experiences in order to compare notes.

PS I'll be working from 4-9 PST tonight so don't be put out if I don't
answer til later.

13 replies, 1402 views

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Arrow 13 replies Author Time Post
Reply Call out to MS sufferers on DU. I am a sixty year old male diagnosed with late onset (Original post)
Monk06 Aug 2012 OP
Warpy Aug 2012 #1
Monk06 Aug 2012 #2
mitchtv Aug 2012 #3
grantcart Aug 2012 #5
tpsbmam Aug 2012 #8
Timmy5835 Aug 2012 #4
Monk06 Aug 2012 #12
Junkdrawer Aug 2012 #6
tpsbmam Aug 2012 #7
smirkymonkey Aug 2012 #9
Monk06 Aug 2012 #13
otohara Aug 2012 #10
randome Aug 2012 #11

Response to Monk06 (Original post)

Wed Aug 1, 2012, 06:30 PM

1. I've escaped MS for now

but I had a long career working with MS patients. The disease is so highly variable from person to person that I don't think anyone can give you useful predictions.

However, if you're not there already, http://www.nationalmssociety.org/index.aspx is a great site that is full of useful information about the disease, symptoms, medication protocols, and future treatments coming through the pipeline.

Most people can have their symptoms controlled for many years.

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Response to Warpy (Reply #1)

Wed Aug 1, 2012, 06:41 PM

2. Thanks. I know MS is a very unpredictable thing. I am a 60 yr old male so that puts me


in a very small percentile for the disease. And male late onset MS is quite a different animal
from the female variety that shows up in the early 30s.

Unfortunately for women this means they suffer longer and more severely than men, who often die of other causes before the disease reaches the debilitating/terminal stage.

COPD will probably take me out before MS does.

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Response to Monk06 (Original post)

Wed Aug 1, 2012, 07:01 PM

3. no MS for me, but I'm dealing with Parkinson's

pretty lonely, so I thought I'd say hi!

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Response to mitchtv (Reply #3)

Wed Aug 1, 2012, 07:30 PM

5. Hey. Parkinson's no fun.


Hope you get some company.

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Response to mitchtv (Reply #3)

Wed Aug 1, 2012, 07:54 PM

8. Both Dad and his younger brother had Parkinson's

Hell, they're all diseases screwing with our nervous systems.....that makes us one big family.



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Response to Monk06 (Original post)

Wed Aug 1, 2012, 07:28 PM

4. Got MS in 1995

My story is quite different then the typical. Got my R/R Dx in '95. I went with the standard drug treatments. A few years later I went to progressive. I started really losing motor functions on my right side. I had trouble writing with my right hand. Western medicine was really of no help. After about 9 years of steady progression under the supervision of western doctors, I discovered eastern medicine. Through the use of acupuncture, herbs and meditation I found the progression not only slowed then stopped but it reversed. Things I could no longer do like run and write with my right I can now do.

Today, I no longer use ANY drugs and have been this way for over 2 years now. I feel better then I can remember. I am pretty close to normal function. Sure, I still feel some of it, for example I still fatque easily but the big monkey on my back is no longer there.

Remember, drugs cure NOTHING. They only treat symptoms. If you really want to heal, that's something only YOU can do for yourself. Doctors, be them western or eastern, are nothing more then healing facilitators, the real healing comes from YOU.

Good luck.

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Response to Timmy5835 (Reply #4)

Thu Aug 2, 2012, 12:58 AM

12. I'd be interested in your regimen. My daughter inlaw has neurological lupis and


she dropped Prednizone and went herbal and she is fine now after
two years. She's doing her Phd in robotic engineering.

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Response to Monk06 (Original post)

Wed Aug 1, 2012, 07:39 PM

6. My wife is the poster child for successful MS management....

1.) Member of Weight Watchers. STRICTLY logs everything she eats.

2.) Yoga. (Gave her a ten pack of class tickets and a Yoga outfit one Christmas. Made a HUGE difference in the quality of her life.)

3.) Started with Avonex but the side effects were awful. Now on Copaxone. It's daily, but the side effects are much less.

4.) Still has flareups once a year or so. Trys to use as little steroids as she can.

Diagnosed in 1994. Still very active today.

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Response to Monk06 (Original post)

Wed Aug 1, 2012, 07:50 PM

7. I was diagnosed 26 years ago.

I had what I believe was my first symptom....and the ones that's been lasting and that has progressed significantly of late.....fatigue. I went into my GP of many years. He was a good GP, but old-fashioned and old-school. He took blood tests, etc. -- just your basic GP workup. When I went back for the results, everything was fine. I was a vegetarian in excellent shape -- I walked most places I went (I was living/working in NYC), I lived in a 5th-floor walk-up and ran up and down those stairs like they were nothing, I walked a a fast pace (got it down to 10-minute miles! I'm tall with very long legs and essentially power-walked) 4 miles to work every morning (great way to start the day!) His answer to me: humans were supposed to be carnivores and I should start eating meat. I told him that wasn't going to happen and reminded him he'd just told me all of my blood work was perfect, including no anemia.

Two years later, I'd just gone back to school and was up early reading for school when portions of my left side went numb. It started with large portions of my left leg and my left foot going numb -- I thought they'd fallen asleep with me sitting in one position -- kept trying to wake them up, but nothing. I then realized that parts of my left arm and hand were numb. I scratched my face and realized portions of THAT were numb. That was it -- I thought I was having a stroke. I'd moved very recently to CT to go back to school -- I called the one person I knew, who set me up with her doc. They examined me, did some heart tests thinking I was sending air emboli to my brain. Meanwhile, I was talking to my parents in NYC and the old family doc. Long story short, I ended up going back to NYC. The old doc thought it was either a brain tumor or MS and referred me to a neurologist who was the head of something, including MS research & treatment, at Columbia Presbyterian.. He ran all of the usual tests, including a couple of MRIs (MRIs were pretty new at that point). The diagnosis was MS, with many of the tests pointing that way, including brain lesions.

The neurologist was great and gave me some great advice: Avoid stress, don't get over-tired and go out and live your life. I had to laugh at the first two, given that I'd completely overturned my life and just gone back to school after many years out.

I didn't succeed in avoiding stress, to say the least, and I got over-tired too, but boy did I ever go out and live my life! I finished school with tons of academic awards & honors and went straight to grad school. I went to grad school full-time while working 20 hours a week as a research assistant, teaching intro lab classes at the university, working at a school for kids with behavior and/or learning problems and working at a children's hospital (which is where I ended up doing the research for both my master's thesis and doctorate). I usually did two of these at a time....like working at the hospital and teaching one intro lab class.

I then completed a year-long intense internship at a hospital in Wisconsin (kind of a much shorter version of a physician's residency) followed by an equally intense 2-year post doc at a hospital in Chicago. I went to work full-time at a Northeastern hospital after that.

I had to retire early because the MS was making it too difficult to work anymore. I'd been able to get accommodations at each place I worked, but eventually those weren't enough. Though I was under no legal obligation to tell prospective employers (including the internship) that I had MS, I decided for my sake to do it. I was glad I did. The fatigue got awful during my internship year and I made arrangements to take a nap at lunchtime (I could down my fruit & yogurt lunch in a matter of minutes). After that, I told potential employers that's what I needed to do to get through the day -- it's just how I was more comfortable doing it. As far as I know, I never got shut out of a job because of it.

It just got to the point where the fatigue was too overwhelming and unpredictable -- a lunchtime nap was insufficient. That was really the thing that finally got to me, though I also noticed cognitive changes. One of my great problems which has worsened over the last 5+ years is cognitive activity (e.g., reading) leading to overwhelming fatigue. And with MS affecting more of my nervous system, stress began affecting me more and I was having more exacerbation. Well, none of this was leading to the kind of reliability my profession demands. As much as I didn't want to, retiring was the responsible thing for both my patients and for me.

A couple of years ago (? I lose track of time) I had an exacerbation that left me partially paralyzed -- I now use a wheelchair most of the time and walker for short distances, having gotten some of the use of my legs back. The fatigue continues to be pretty overwhelming -- some days, it hits 1/2 hour after I get up. I can't function through that kind of fatigue -- I usually end up giving in and going back to bed for a couple of hours.

Meds: Avonex (I get it free), multiple anti-spasmodics due to painful spasms.....baclofen, tizanidine & cyclobenzaprine, imipramine at night so I don't get up to pee as often, BP meds (docs feel MS has been part of my BP problems and I was the one who figured out I have autonomic dysreflexia, which sends my BP soaring sometimes) and a couple of other unrelated meds. I recently got on Inclusive Health (fed health insurance thanks to the ACA).....unfortunately for me, that means that two of my meds are no longer available to me. Nuvigil, which is the first med for fatigue that really worked for me and Aricept for my memory problems. I'd been getting both free because I had no insurance -- now that I have insurance, those programs are closed to me but with a $4500 deductible, I can't get meds that together cost about $700 - $800/month! Sucks. (Over the years I took other meds for fatigue -- all worked for short periods....cylert, ritilan & amantadine. The amantadine probably worked the longest but a few years ago I developed livido reticularis from it and stopped taking it.)

Warpy gave you great advice -- it's truly variable among different people. And he referred you to an excellent site -- the MS Society is a good place to go to get information. There were a few other sites I relied on early on -- I'll have to do a little exploring to find them -- can't really remember what they were and that was many computers ago so the links have been lost. There was one in England I found very helpful.....I'll try to find that and others.

But I go back to my diagnosing neurologist's advice: go out and live your life! And part of that can be reaching out to others to learn and find support from people who "get it." Even the professionals around me often didn't "get it" -- I'd get grief, e.g., because I never went out after work and never really socialized. Hell, it was all I could do to work full-time, get home safely and crash into bed! Weekends were devoted to the usual weekend errands and SLEEP, which lots of people with MS who work full-time do -- sleep TONS to make up for the exhaustion of the week, which is cumulative. I was always ready to die by Friday.....Saturday and Sunday were blessed sleep days to recover from the week and gird myself for the following week!



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Response to tpsbmam (Reply #7)

Wed Aug 1, 2012, 08:46 PM

9. Hell, I was like that living and working in NYC, and I don't even have MS. I can't imagine what it

would be like to try to get through a working day with a debilitating disease. We are overworked, underpaid and just too stessed out in general. I just moved to Boston a month ago and my stress levels are lower so I can put some efforts into living more healthfully, volunteering, getting out a bit and getting some excercise. I reallly felt like the quality of my life in New York almost didn't make life worth living. Is there someway you could eliminate some of the stress from your life?

I wish you well and I know a diagnosis of MS is not an easy one to deal with, but the more external stressors you can eliminate from your life, I am sure you will find things a bit more manageable. Good luck and I wish you all the best!

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Response to tpsbmam (Reply #7)

Thu Aug 2, 2012, 01:08 AM

13. I here you about fatigue. I sleep 14 hrs a day and am still tired. My symptoms were


optical neuritis which caused loss of sight in one eye and hallucinations in the other.
Pretension knocked that down then four months later I developed slurred speech
preceded by numbness in may left buttock. I'm on Rebif but the side effects are
severe flu symptoms three times a week.

I haven't had a remission in two years. The good news is I live in Vancouver BC and
my meds and health care are free because I am officially disabled. I still work part time
so that's a help.

Also my memory and spelling which is a memory function seems to be slipping lately.

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Response to Monk06 (Original post)

Wed Aug 1, 2012, 09:11 PM

10. Transdermal Magnesieum Therapy

Mag. Chloride flakes + distilled water = Magnesium oil.

It feels oily - rub it on every day - it relaxes the muscles and get's your magnesium up. We're all mag deficit due to corporate farming.

Here's a good article, buy the stuff from the sea, vs the lakes. Ancient Secrets is a great brand.

http://www.transformtheillusion.com/articles/Barbara%20Bourke/MAGNESIUM%20CHLORIDE%20FOR%20HEALTH%20AND%20REJUVINATION.html

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Response to Monk06 (Original post)

Wed Aug 1, 2012, 09:12 PM

11. Buy a horse.

Sorry if that was rude. I hope it made you laugh, though!

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