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Old 02-19-2015, 12:56 PM #31
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Like Kelly and TXBatman, I was relieved to hear the MS diagnosis as they thought I had a nerve tumor in my thoracic spine. I'll take MS over that.
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Old 02-19-2015, 02:43 PM #32
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I think I was actually laughing at the pictures of my skull and brain when my pcp showed my my MRI's. He started laughing too. I was just so relieved that I did not have a brain tumor and I knew two people who had MS and they "looked" like they were doing okay.
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Old 02-20-2015, 08:14 PM #33
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Ah yes, Barb.."but you look so good"...
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Old 02-20-2015, 09:17 PM #34
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When I've heard this I've always wondered what they think ppl with MS look like. Ghouls, perhaps?
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Old 02-20-2015, 09:58 PM #35
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I think we ought to make this a sticky thread, so all newbies can read and
won't feel so alone. I hate to see it get lost!

UP DATE: Thanks for the sticky!!!!
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Last edited by SallyC; 02-21-2015 at 11:24 AM.
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Old 05-26-2015, 03:14 PM #36
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Just read some of your stories, thanks all.
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Old 03-02-2020, 12:26 PM #37
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Just reintroducing myself here.

I was diagnosed with MS in 1980 but had had symptoms that were cramping my style in a big way for a couple of years before that--lots of falls, and after walking a couple of blocks, I'd start to have what seemed to be back and leg problems, and sometimes my eyes acted up in weird ways. Electric-shock sensations in my neck. Some bladder problems too.

After yet another fall and yet another broken bone, I asked to be referred to a neurologist, who diagnosed MS after consultations with an otolaryngologist and ophthalmologist and lots of tests. There was no MRI at the time.

The ENT doctor found I had nystagmus probably caused by a lesion in the pons. Years later I started having MRIs, and by now I've had 5 of them, all showing MS lesions.

But none of the lesions have been enhancing, and so I've been lucky. I can still walk though outside my (small) apartment I use a rollator now. Since the mid-1980s I've had a manual wheelchair and I sit in it most of the time.

I use it on bad days when I can't even get around my apartment and if I have an appointment or some other place to get to, I take the paratransit van with my wheelchair. I don't know when I'm going to give out, and just staying in the wheelchair for situations where there is a lot of uncertainty works for me.

But I do try to walk at least 1,000 steps a day and check my pedometer at the end of every day.

I also have Type 2 diabetes and so far haven't been on insulin though I'm on a fairly strict diet. I've been eating a lacto-ovo-vegetarian diet for about 30 years now.

The eye problems calmed down over the years though I now have cataracts. I've been postponing cataract surgery and will probably keep on postponing it. My best corrected vision is now only 20/40 to 20/60 but I can get along.

I was plagued by kidney stones for about 10 years, and the pain was very nearly intolerable. I am very glad not to have had any more of that pain in recent years.

I have osteoarthritis that causes pain and stiffness, and a certain amount of swelling in my lower legs but aside from those issues, I'm doing OK.

Since moving to another state 10 years ago, I've had only a few falls and no bones were broken. I'm very lucky.

I don't do much and don't go many places. I shop online for everything and use a grocery delivery service or Instacart for groceries. I live in HUD rental housing that has been my salvation. It's even air conditioned.

I've never had a car. I don't cook much any more. In the last 10 years or so I've been eating frozen or packaged meals for dinner and limiting my cooking to steaming or boiling vegetables (fresh or frozen) and toasting a muffin or piece of bread in the morning. Life is much easier without doing so much cooking.

The neuro who diagnosed me thought that the first MS episode might have happened when I was 20 but it can't be proved because no one thought to look into it at the time. I had severe vertigo for no known reason, and I blacked out and fell, destroying 4 front teeth. Two more teeth had to be filed down to support the bridge that was made for the 4 missing teeth. I had another vertigo episode about 12 years later, and some episodes of inability to move my legs. But up until my mid-30s I was pretty healthy otherwise, except for frequent sinus infections that always required antibiotics. I had one or two of those a year. I'm glad not to have those any more either (knock on wood).

I also had many UTIs over the years.

My hearing began to go about 15 years ago, when I got hearing aids.

So that's my health history, if anyone is interested. I've been floating around on several MS boards for nearly 20 years and hope to be more active here.
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Old 03-02-2020, 01:22 PM #38
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I miss Sally so much

I was dx in 1988 at almost 40. I was lucky dx came quickly by MRI. No meds and if there were they would've taken credit for me being sx free for 13 1/2 yrs. I attribute doing so well to healing prayer and meditation.

I went on Copaxone for 2 1/2 years to find my MRI was lit up like a Christmas tree. I was then offered Tysabri which I started in 2006. It was my G-d send as I was physically going down hill and scared. I have been on Ty ever since and many sx abated and progression halted. I use a scooter, walker or cane because my R leg doesn't move well-other than that I'm doing mostly ok. If I had been able to go on Ty a year earlier I would be walking and dancing like I wish.

This is my story and I'm sticking to it

Linda
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Old 03-02-2020, 01:41 PM #39
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Yes, Sally is greatly missed!

Linda, thank you for posting. Congratulations on staying with Tysabri--and I'm so glad that it's been helping.

Some months ago I heard that researchers were working on a new version of Tysabri that would make it possible for the infusions to be done at home. Have you heard anything about that?
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Old 03-04-2020, 04:59 PM #40
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Quote:
Originally Posted by agate View Post
Yes, Sally is greatly missed!

Linda, thank you for posting. Congratulations on staying with Tysabri--and I'm so glad that it's been helping.

Some months ago I heard that researchers were working on a new version of Tysabri that would make it possible for the infusions to be done at home. Have you heard anything about that?
I haven't heard about a home infusion. Even if I had, I don't think I would want to do that ??
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