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too young to retire
Posted: Sat May 16, 2009 8:51 am
I'm a 53 year old male. My GP says I have MS, My Neuro says POSSIBLE MS. I've had all kinds of tests, including 2 MRI's, 3 CT's, multiple blood tests, a VEP test (still waiting for report). I have a 2cm lesion on my brain which was thought to be a tumor (I had a brain biopsy which proved it's a lesion)
I'm wondering if it's my age that makes the Neuro reluctant to diagnos MS? Any one else feel their age is holding up a diongnossis?
I haven't worked in over 3 months, and would like a dx so I can consider treatment.
Posted: Sat May 16, 2009 8:24 pm
Yes, your age could be the reason you have not had a dx. I am 61, been dx with Central Nervous System Disorder, possible MS. I have over 11 lesions that are questionable, 2 that say MS and many symptoms of MS. Neuro said if I was 28 would say MS. Have had many tests etc., last year I asked what else it could be besides MS and he said nothing. See the Neuro every 6 months or so. Next visit end of this month to set up another head MRI and hopefully will also look at shoulder / neck area where swelling for past year has shown up. Family Dr. has sent me for ultra sound, X-ray, rheumotologist and no answer, may be neurological. Have read a lot about MS, looked through this site the past few years, asked some questions on this site and feel a fast diagnosis may not be the best thing. Could be something else that could be treated. Being older does seem to complicate a difficult disorder to diagnose. After reading about some of the drugs to maybe help I am not in a hurry to do them either. The Neuro I have is considered to be one of the better ones here for MS and does listen to me and give me time. Other Neuro's ask him for advice re MS. If I was progressing faster probably would push more. I would like a dx, feel it would be easier to fight what I have. My next visit to the neuro will tell how things will go. Good luck, Linda
Posted: Sun May 17, 2009 4:32 am
I was dx'd w ms 5 yrs ago at age 56. One leg doesn't work right, fatigue, balance off, drop foot but I still have muscle strength. Maybe from yrs of exercise and running. Still work part time. gotta have insurance!
Posted: Sun May 17, 2009 8:35 am
Hi Linda, thanks for the reply. Hey, Surrey, we lived at 64th & Scott rd in the early 80's. Live in Blind Bay now (Shuswap Lake) Anyway, I hear you re-not wanting a rush diagnosis, I too would just as soon find I have something that can be cured. It's just that because of all the symptoms, and the fact that the Doctors haven't found anything else, my wife and I have come to believe it is MS. We do know it is a "demyelinating, MS type of disease", to quote my Neurosureon. I've even been tested for Syphalys of all things! I am waiting for results from a VEP, and a Doctor/clinical professor from UBC Vancouver has a blood sample of mine, though even my GP doesn't know what he is testing for. I'll be getting another MRI in August. my GP is going to make an appointment for me at the MS clinic in Kelowna, maybe they can help me out. The main reason I want a diagnosis either way is so that I can research meds and decide if they're right for me If there is a way to slow down the progress of whatever my disease is, I want to know all about it.
Just another comment about age. I'm quite pleased I didn't have these difficulties at a young age! But it seems odd that your Neuro would say if you were younger, it would be MS. Maybe you've had it for years without knowing? Good luck to you, too!
Posted: Sun May 17, 2009 9:08 am
Hi Ellen. Did it take a while to get diagnosed? Yes, I agree, you gotta have insurance. Luckily, I do, so I don't have the stress that lack of insurance would cause. I could work part time, at least in the morning, but I'm not able to work at my normal job right now. I guess when I say I want to get back to work, I really mean I want to get back to normal, or at least as close to normal as I was before this hit me.
Thanks for the reply.
Posted: Sun May 17, 2009 4:40 pm
Actually dx'd the first time in '97. Then told not ms...sounded good to me and symptoms had gone away. I had several yrs of not much in way of problems. Exercised, ran, played tennis, etc. Then started slight foot drop, tingling, fatigue in 2001. After dx's of shin splints and fibro finally had a neuro that felt it was ms. MRI's, symptoms, and family history played into diagnosis in 2003. Had relatives with major ms in their young years so feel I am fairly fortunate. Wish you well in trying to find out what the problem is. I know it can be very frustrating just not knowing.
Posted: Mon May 18, 2009 10:38 pm
Yes, Mike 56, maybe I have had for years. Can think of things through the years that could point to MS. The reason my Neuro said if I was younger would say MS – seems we could all show lesions on our brain when older and hard to say what they are from. Could be from our age and mean nothing. 2 of the 14 or so of mine do show up as MS in the right situation. This is written on my last MRI report March 2008. Asked what else could be looked at and that is when he said nothing. Wants another MRI now to see changes, if any. My family Dr. feels it is MS and my husband and I have felt it is for a long time. I have not read about a drug etc. I would take now, that could change if things get worse. Have had some new problems the last month so will see what the Neuro says when I see him in a few weeks. Maybe there will be something he can see to check out. Have read about an MRI that does something else to show the grey matter as well as the white. Seems some MS shows up in the grey matter. Here is the site if you want to look at http://www.msif.org/print.rm?id=17809
I’m asking for this to see if it will show anything new. Not sure what he will say.
We live in Cloverdale and run a small organic farm. Linda
Posted: Tue May 19, 2009 7:19 am
Thanks for the link Linda. I read the article, which is all greek to me, but it gives me a little more to ask my doctor's about. I'd be interested to hear how your neuro reacts to your request,......I feel like mine wouldn't even look up from his papers long enough to hear me ask about it. I'd consider medication if the experts recommended it. I've got to work 7 more years before retirement, although I'm on sick leave till the 28th of May, and have applied for LTD, I'd rather be back at work. I can't work the way I feel, so meds may be the answer for me.
Organic farming..sounds like a nice wholesome life,.........and a lot of hard work! We raised our kids (and our children too) on a small hobby farm in the Cranbrook area. The girls did most of the chores, including operating a small egg business in the area (there were only 11 houses around, so a very small business) I still felt like it was a second job to look after the buildings, fences, etc.. but I really liked pretending I lived on the "farm", and raisng a children who know where their groceries come from.
Cheers and good luck to you!
Posted: Tue May 19, 2009 10:49 am
Linda - have you had a spinal tap? My spinal tap was the "clincher" in my MS diagnosis - oh, I was 59 at the time.
Posted: Tue May 19, 2009 4:31 pm
Mike 56 - the farm is work but only have 3 acres and work about 1 1/2 - 2. My husband is retired now so easier than it was. I'm doing a lot less now but enjoy what I can do and keeps one in shape. We are looking at what we are doing and how to make easier. Have done some changes the past few years and time to do more
Sharon - yes to the spinal. Had one and not conclusive for MS. Had at the beginning of my trip through this, 6 years ago or so. No other ailment is showing up so I do think it is MS. Would be good to know for sure but I guess it would not change what is going on. Maybe look at antibiotics, not sure.
All the best, Linda
Posted: Fri Aug 07, 2009 11:15 am
I had my first MS symptoms in 1990 at the age of 41, numbness in my hands and lower arms, short periods when I couldn't move my fingers and sudden loss of balance resulting in falls. Over about a 6 month period two separate neurologists failed to diagnose what was wrong. Feeling in my fingers finally returned, as did my balance and I chalked it up to stress. Over the following 10 year period I had short periods that I knew my balance was a little "off" and as an avid cyclist had periods when I couldn't spin the cranks quite as fast as normal. In 2001 my feet started going numb, my balance issues were back and I started having trouble walking. Diagnosis took nearly a year, two neurologists, a neurosurgeon and more tests than I can count. I was finally diagnosed by an MS specialist at Oregon Health Sciences University in Portland, OR. His comment was that with the amount of testing data I had amassed "a competent HS graduate could have diagnosed me." I believe there are a lot of generalist neurologists out there who don't want to make the MS diagnosis. Go see one who specializes in MS if you're having troble and suspect MS.
I was 53 when I finally started getting feeling back in my legs and could walk reasonably. I've been taking Copaxone since then, and free of any additional lesions on my MRI. I worked, as a Fire Chief, for another year, but the job stress was almost crippling me some of the time. I retired just short of my 55th birthday, with less money than I'd have liked, or planned, but it's been a good decision. Getting rid of the stress has helped a lot. I just turned 60.
Posted: Fri Aug 07, 2009 2:50 pm
eburgdave, thank you for your reply. The Neuro. I have been seeing the past 6 years is an MS specialist, works with the MS clinic at the University of British Columbia, and is known to be one of the best for MS. He does not dx unless he is sure. He has not stopped looking at what it might be, has dx me with central nervous system disorder because of my symptoms. Just had another MRI yesterday to compare with the one I had almost 2 years ago. May show changes and some answers. The symptom that bothers me the most is overactive reflexes. Have stopped driving because of them. Cannot control my movements at times. Loud noises, sudden movement from others, (or cars), touch on back, shoulder, arm. Have fallen down when touched on back. Looking for some way to control these symptoms, miss being able to drive. I use a stick when walking to help if it happens. Also tripping more, drop foot. Thanks again, Linda
Posted: Fri Aug 07, 2009 4:22 pm
Pinda, I also suffered from involuntary muscle spasms, mostly in my legs and mostly at night, which kept me from sleeping and the symptoms were gradually worsening. My neuro prescribed Baclofen, which has been extremely beneficial. I don'st know if you've ever taken it, but if not, you might ask your neuro about it. I wouldns't sleep without it. Eburgdave