Was last here 15 years ago.....

[Jeanie Z]

:) Mark glad to see you post. I am on LDN for 20 years now. I recently fell and am recuperating from a shattered fibula and surgery with a huge long pin, 5 screws and a plate. I live alone and manage well most of the time. Glad you are doing so well.


Temps here in West Palm Beach were a feel like 102 yesterday and will be again today. Jeanie :)

[Virginia]

Howie, hope I didn't step in too quickly. I saw the time lapse from Mark's last post and was trying to get him before he vanished again. If we are lucky we will see him sooner this time, but who knows?

[Howie]

Not at all Virginia. I'm always watching TV when I'm online, so I'm gone depending on what's on. I'll be gone after 10 tonight. It's like Star Trek. For years, I watched it looking for one I actually hadn't seen. And now I have them all on DVD.

[agate]

I have long believed that MS therapies are not more effective because MS is a constellation of symptoms lacking a common cause (this belief is not original to me). Different therapies work for different people … if something doesn’t work, try something else. And even if a therapy is effective, it may not undo damage that is already done. Unfortunately there is no magic bullet for everyone.

Mark, I hope that more attention will be paid to this idea. In fact, it would have been a good idea to keep in mind in the last several decades, but instead there have been many bewildered people wondering why Avonex or Rebif or whatever didn't "work" and despairing when they turned out to be switching to first one MS therapy, then another--and still progressing by the usual yardsticks.

I realize that the drug companies could hardly have come forward with statements like "Well, this is only very tentative, and 'MS' isn't a very good name for all of the symptoms without any identifiable cause that people have. It's fairly definitely a demyelinating disorder, but that's about all we know just now. Anyway, here's this drug for you to try. Who knows? It just might help."

But underneath the presentation of these drugs to patients, that seems to have been the real situation.

[agate]

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Hi Everyone,

What's everyone's story with symptoms and diagnosis - when this all started, symptoms, what meds are you on, supplements, diet, etc.? I thought there was a thread where everyone shared their stories, but I can't seem to find it. I don't want to ask people to repeat things - a link is good.

Thanks,

HWO

Hi HWO,
Sorry to be so late in getting around to replying to your question here. There may be a post somewhere giving this information but I haven't figured out where it is.

So I'll start the ball rolling:

I was diagnosed with MS in 1980 but the first symptoms may have appeared years earlier. I had a bad vertigo episode 19 years earlier and at the time I blacked out and fell, fracturing several teeth. About 9 years before the diagnosis I was having leg stiffness, a "frozen" face, and another vertigo episode. About two years before dx I started falling a lot, having bladder and bowel problems, and especially vision problems--sudden disappearances of large parts of the visual field and times when my eyes seemed to be rolling around in my head. Those episodes stopped me in my tracks because I couldn't see (and was apt to fall). With some of the falls I broke bones. There was also the weird Lhermitte's sign (electric-shock sensations in the spine), and there was a lot of tingling, numbness, and sometimes paralysis.

I've managed to curb the symptoms over the years by learning that I can't really get away with very much activity. I sit in a wheelchair most of the day but still manage to take 1,000 - 2,000 steps a day and keep up with an undemanding exercise routine developed by my physical therapist. With heat or excessive cold, an infection or an injury, or overexertion, I'll always get some unwelcome symptoms and may be too weak to get out of bed without support. My speech will deteriorate, and my short-term memory becomes worse.

I was taking Avonex for 3 years, then Copaxone for nearly 3 years, but now I'm taking only 5,000 IU of vitamin D3 daily. I was diagnosed with Type 2 diabetes in 1984 and need to watch my diet carefully but so far it's been diet-controlled. I eat a lacto-ovo-vegetarian diet and watch potassium, fiber, and protein particularly (trying to get enough of them) and sugar and fat (trying to keep a lid on those).

I take a thiazide diuretic, a potassium supplement, 4 aspirin a day (for arthritis), and 5 mg of Lipitor (atorvastatin) for cholesterol control as well as Claritin for sinus problems. I take 1 Centrum Silver multivitamin each day.

I've been going out less and less as the years have gone by. I take the paratransit van (lift-equiped) in my wheelchair to medical and dental appointments and occasional essential errands. All shopping is done online or by phone. It's been like this for the last 10 years or so as I try to save my energy, and the effort of going anywhere can be very tiring.

I've had more falls than I can count, more UTIs and sinus infections than I can count. Nowadays balance is a problem, and my speech and hearing are getting worse. But then I'm not exactly young any more.

--Even if hootswithowls doesn't see this, it doesn't seem like such a bad idea to post our stories here for general reference, IMO. Or no?

[Howie]

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Even if hootswithowls doesn't see this, it doesn't seem like such a bad idea to post our stories here for general reference, IMO. Or no?

No for me. Been there, done that, multiple times. I don't like typing.

[agate]

It was just a thought. If this was a requirement, you'd be excused, Howie, since in the past you've taken the bold step of posting your entire, unabridged, unedited, unexpurgated MRI report for all the world to see. For those who've forgotten or never seen this, he left in all of the spicy parts....

[Howie]

You know, I don't even have that post saved. I have the original that came with the MRI films, but I never saved the post here.

I had a computer "crash" a few days ago, and lost all my passwords. I got most of them back, but the one I didn't get back, and need, is to my Utilities Co. so I can pay my electric bill. But they send me an E notice, and I THINK I can just follow that link, and pay my bill.

If not, then I'll have to call them which I don't want to do.

[agate]

Go to your utilities company Webpage and see if you can log in. If you can't, there's probably a little note somewhere near the log in window saying Forgot your password? or something like that. If you click on that, you'll find out that they'll send you your password by e-mail or show a way to get a new password.

Your account should still be there.

[Virginia]

I was getting out some info on my medical road to a diagnosis when I got a telephone call. Will try to do it later. Little upset now. Will explain in Chit/Chat.