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MS when you're older
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An_254189 posted:
I've been looking for someplace where I might find older folks with ms. I'm 68 and have had it since I was 12 though it wasn't diagnosed til I was 22. Any older folks out there?
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hackwriter responded:
Hello,

I'm 55, mildly symptomatic since age 12, had my first full-blown attack at age 41 and diagnosed at age 47.

I'd be interested to hear about your disease course, you've lived with this for a long time. Please do share


Kim
 
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marco56 replied to hackwriter's response:
Hi Kim,
I was diagnosed 26 years ago and progressed rapidly. I used my first wheelchair less than a year after diagnosis.
Much to my surprise, I started getting gradually better about six years ago. I can now walk unassisted and no longer need hand controls to drive my car. My symptoms continue to improve almost on a daily basis. You can't ever give up hope.
 
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delany replied to hackwriter's response:
Hi Kim-sorry this has taken me so long-life got in the way and I didn't get back to the pc for a few days. I don't have a smartphone or ipad, just sit down at a desk to get on this-chair's not comfortable and the screen isn't at the right height for my glasses so it's something I don't access unless I make some time to catch up.
I was like you...mildly symptomatic here and there all through my teens. Made me seem neurotic, anxious and I wondered if I was nuts because no one took "there's something wrong in my head" seriously enough to explore what was wrong. They didn't know that much anyway-no MRI's-I had a spinal tap that showed some bands and I had one and a half syndrome show up in my eyes which the neurologist said was definitive for ms.This was when I was 22 and had a full blown attack which was terrifying for my husband of 5 months and me.Though I have had lots of flareups with hands, feet, legs, back over the years, from the beginning it has mostly centered on eyes, balance, heavy head feeling (one neurol. said it was brain stem stuff) and one side of my face being a bit lazy sometimes-(it was totally nonfunctional during the diagnostic flareup.) Whenever I wonder if I'm "kinda ms-y" that side of my face droops some. Had a really tough first 10 years-one flare after another for a while here and there. In the hospital a couple times with profound dizziness. Very discouraging-nobody could tell me much of anything. Despite having two little boys I loved dearly I seriously considered giving up because I thought it was so unfair to them and my husband to have to live this way. Then I was put in touch with a woman who was a neurologist with a lot of experience with MS. She sat with me for over an hour and just talked about learning to pace myself. With practice that became the guiding principle to my life and I started doing much better. I've had three children and their care always came first when I'd figure how to pace the day-lots just got dropped, plans changed, if I was starting to feel weird. I worked parttime in a place near home and had an understanding boss who would let me work at home when I was having difficulty. I'm walking, talking, seeing except when it acts up occasionally but when it does I drop everything and rest. That's helped so so much. I've found a big difference (coincidence or real?) since hitting menopause. In earlier days flareups often coincided with my period. About a year ago I was seeing a neurologist for a period of eye/balance stuff and he saw the one and a half thing in my eyes and some nystagmous(sp?) The MRI showed no new lesions tho. I've had some bladder challenges but I've made peace with those. The heat bothers me a lot-wipes me out-so I don't go out much in the summer. Even tho I live in A/C I'm a different person in the warm weather-I just feel totally different-clearer, less fuzzy when cool weather comes. This is one weird disease. I grew up in New England-fit the demographic perfectly.
btw my name isn't delany--I tend not to use my real name online especially having to do with this disease-way info flies around I think I'll be deluged by advertisers for whatever. Long story why I chose delany!
 
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godservant3 responded:
I am also 68 yrs. old, and have had MS for around 30-35 years. Diagnosed in 1989. I am married to my husband of 15 yrs., my friend and helper. I've been retired from a diversified teaching career for three years, but do sub for special needs teachers a couple days each week.
 
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53jack responded:
I'm 60 years young. I was dx'd at age 24 but Had my first symptom bells palsy at age 18 right out of high school. It went away. I had been out running the night before and woke up numb from the waist down. My grandfather had it so i was sure right way. The doctor took another 16 days. Good luck to you.

Jack
 
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dianne331 responded:
Hi,
I was diagnosed in 1967 at UCLA Medical Center in California. I have experienced many things since my diagnosis. I am a seventy-one female, and I am doing quite well. I have wonderful physicians that care for me. I walk with a cane, but other than that, I am very "with it" and independent.
Many friends and acquaintances have told me that I don't look as though I have anything wrong.
Keep in touch, I am very upbeat, and don't let a lot get me down!
 
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agtog responded:
Hi, I'm 56, diagnosed at 35 , symptoms since 28.
Worked and kept going due to aggressive and pro-active treatment of first signs of relapses.
Uses cortisone IV 1500 - 3500mg depending on severity of relapse and treat the side-effects afterwards, much harder than taking the drip isn't it?.
Good to remember that cortisone changes our immune systems from over-active to compromised. I am prone to infections after, especially pneumonia. I now take a second flu-vaccine in December together with a pneumonia vaccine.
The restless and painful legs at night was bad, anti-epileptic drugs 400mg early evenings is a miracle, ah , sleep sweet sleep! It is like the brain is 'miss-firing' without cease due to the lesions.
Recently I started getting neuralgia/inflammation of the nerve-endings, it is something like shingles and I ended up at emergencies swearing that all my ribs were broken, all at the same time, without me noticing how! Icyclovir 800mg for 2 weeks mends my broken ribs, shoulders and back every time. Ah, what would happen to me without medicine, heaven is the release from pain indeed.
Intra-cranial pressure and diamox are such good partners as well. And ulcers and diabetes follow cortisone like a puppy follows his mom. Good news is that my diabetes vanished after 15 years with less cortisone use. To explain to anybody that I am a temporary diabetic is to tall an order , I don't even try any more.
Marco, so good to read that your MS is probably burning out, gives me hope.
Strongs to all you more mature sufferers.
'agtog dit is 'n ellende soms'
 
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An_254278 responded:
I am 67 and was diagnosed with MS in 2005. There is no way to know long I had it before it was diagnosed. Am lucky that it was caught early and have no visible outward signs. I notice changes in myself so I know MS is there.

Signed 19212453
 
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An_254280 responded:
also 68, diagnosed when I was 55; am quite lost right now, just lost husband in june & have found myself hibernating too much.
 
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peteor replied to marco56's response:
Hi Marco56,
Hope is what we all need. That's great you are getting continued improvement . I'm curious as to the type of MS you are diagnosed with. I have Primary Progressive and I started to notice the issues when I was 53-54. I need a cane for balance and use a walker for short distance and a wheelchair for activities. I'm 59 and was only diagnosed by an MRI in 2011.
 
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sloanme responded:
Hi,.
I was not diagnosed till age 63. Hindsight tells me MS started in my 20's. I am now 74 years. It was probably good I did not know about MS as there was nothing that could be done that long ago.
 
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happybum responded:
Hi I am 62 years old. I was clinically diagnosed when I was 19. I have had symptoms since I was 12.

I am just another older folk who is willing to share with ya'.
 
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godcanrepair replied to marco56's response:
I was diagnosed in 2000, but actually started back in 1983,before they had tests or drugs. I am now 59. I had r/remit for about 20 yrs. and am so thankful I was pretty normal but has progressed to secondary progressive. I had a severe UTI infection in 2006 and was left with my right leg not responding. I am now in a power chair. I was excited to hear you are walking again. May I ask what your medication is and what do you think might be responsible for this? I know how crazy MS is and different for each person. I am waiting for the new remyelination drugs, or God's intervention! I am managing my other symptoms with meds. I am so happy for you, keep walking!
 
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txyank replied to An_254278's response:
Hi I to found I had MS in 2009, I was 62. I do however have signs that show, like foot drop, vision. What I have learned is if MS runs in your family and you are from the East tour chances are greater to have MS. I went to a doctor for over 10 yrs and he said I was to old to have MS. I changed docs. There is no test that works until damage shows. I am retired and I am on Tecfidera now. I have tried copaxione and avonex. They worked fine but I hate shots now I am trying the pills. Good luck and a happy life.


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