Old MSer - New to This is MS

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Old MSer - New to This is MS

Postby amasot » Thu Jul 16, 2009 9:13 am

I don't know how I could have been all these years on the Net, always surfing for interesting MS sites and still missed this one!
I've been lurking a couple of months now and I've been quite impressed with the knowledgeable posts.
But first to introduce myself: I am female, 53 y.o., married, dx'd in 1989 but by retroactive admission, I have had MS since 1974. By the time I was dx'd, I had already slipped into SPMS, although it was not made official until 1995. By the year 2000 I had quit working, driving and was in a wheelchair, retired on permanent disabiity.
There are very few sx's I have NOT experienced, and have tried many remedies, with very little success. I am now on plain old "symptom management".

I would be interested in chatting with people who have had a similar course of the disease, or are just "old timers" for the purpose of discussing symptom management, life style management and emotional issues.
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Postby peekaboo » Thu Jul 16, 2009 11:09 am

Hi Amasot - Welcome to time...there are alot of out of the box theories on this forum. I would check out the natural approach and the ccsvi threads.
There is a wealth of info here and if you don't see what you want to, you can create your own topic as well.

I am 50, menopausal, and PPMS..I am wheelchair bound too. And I love TIMS and the community it creates. This is my saving grace :D
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Postby amasot » Thu Jul 16, 2009 11:41 pm

Hi peekaboo, thanks for the response.

Yes, I did see many refreshing ideas as I surfed thru TIMS and I look forward to researching them further. It's A LOT of info to digest, so you can be sure I'll be here for a loong time! :D
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Postby DM » Sun Jul 26, 2009 6:12 pm

Hi,

I am a male, same age. DX in 2007. Thankfully no symptoms. On a clinical trial and doing just fine. PM me if I can be of assistance.
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Postby amasot » Sun Jul 26, 2009 7:31 pm

DM wrote:Hi,

I am a male, same age. DX in 2007. Thankfully no symptoms. On a clinical trial and doing just fine. PM me if I can be of assistance.


Hello DM nice to meet you. What are they testing in the clinical trial? Are you SPMS?

I find that there is an ever increasing difference between RRMS and SPMS so that it becomes harder and harder for the two to communicate on equal terms. RRMS usually has sudden and intense symptoms. They are scary and may take some time to pass, but they do pass and the patient returns to base 0 (well).

SPMS has milder episodes and they are often the same type of disabilities you have previously experienced. As MS progresses, new disabiities are added, making your life more miserable since nothing ever returns to base 0 again.

This is the reason I wish to discuss sx management with people with SPMS. I haven't had a "good day" in over two years and I'm wondering how others can take it without losing their minds.
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Postby DM » Sun Jul 26, 2009 7:44 pm

At least we met. I have had only one episode in my life, back in November 2006. Just some very mild numbness in the fingertips and the lest side of my mouth around the lips. Lasted 3 weeks, and as fast as it came, that is as fast as it left. No further symptoms. Perfectly fine and normal. Wish I could say the same for you, but maybe one day soon.

Guess I am lucky, sort of speak. Maybe the study is doing something, who knows? Don't know what type of MS I have, RRMS, SPMS or whatever!

I'm on teriflunomide since Nov 2007. Finish the clinical trial in November this year, The on to the real McCoy if I am on the placebo. Long thread in the drug pipeline on this drug.

Well, let up hope and pray that a major breakthru is on its way to rid us all of this awful disease. and I understand the difficulty of communicating based on our very different classifications. :)
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Postby gabelle » Mon Jul 27, 2009 6:06 am

amasot, Hello from Georgia, I too have PPMS, dx in 2002. In 2 yrs went from walking to wheelchair. I tried all known ms drugs and my s/s worsened with each new trial. now only symptom mgmt. I do take 4-ap and it helps. would love to talk about daily management.
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Postby amasot » Fri Jul 31, 2009 11:51 am

DM, please let me clarify that I didn't mean to sound dismissive of people with RRMS, or any other sort of MS for that matter.
There is only one kind of MS as far as I'm concerned: the unwanted kind!

I too am happy to have met you. First time I hear of teriflunomide. I will go read up on it now! I wish you every success on the test and I hope that we will have the opportunity to chat again.
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Postby amasot » Fri Jul 31, 2009 12:08 pm

gabelle wrote: now only symptom mgmt. I do take 4-ap and it helps. would love to talk about daily management.


Hello gabelle, it's very nice to meet you, although I would have preferred it to be under different circumstances.

I realize that PPMS is probably the scariest type of MS to have, especially if the progression is as fast as yours seems to be. What are some of your main symptoms? Mine are tetraparesis, extreme fatigue, loss of balance, pain, spastic bladder and half a dozen syndromes I don't recall. Oh, memory retrieval is pretty shot up too! lol
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Postby notasperfectasyou » Fri Jul 31, 2009 12:15 pm

Hi amasot!
Welcome to TIMS!
I'm interested to know what made you decide to post? I guess what I mean is, a lot of folks lurk and read, but I've always wondered what the triggering event is that causes folks to start posting. I'm really happy that you're here. This is a very cool and unique place. Ken
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Postby peekaboo » Fri Jul 31, 2009 12:26 pm

i don't feel so alone as a ppms'r now :? . we are a small part of the ms world :(
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Postby amasot » Fri Aug 14, 2009 7:13 am

notasperfectasyou wrote:Hi amasot!
I'm interested to know what made you decide to post? I guess what I mean is, a lot of folks lurk and read, but I've always wondered what the triggering event is that causes folks to start posting. I'm really happy that you're here. This is a very cool and unique place. Ken


hi Ken.

I did not mean to take this long to answer you, but I had an unfortunate accidednt involving my left wrist, hospitals, operations, that sort of thing. I have been thinking of your question all along and I don't know that I have the correct answer for you. I suppose we all feel the need to reach out and communicate with other people who we feel may understand part of what we are going through. The need to be helped and to help in return.
The need to communicate. Wasn't that the reason that you wrote your articles? Otherwise, why bother? (Great job in collecting all that info, BTW!)
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