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New to MS

Postby msintdot » Sun Nov 16, 2008 6:59 pm

Hi,

I'm new to the world of MS and prior to my diagnosis I was a pretty active guy. I'm the guy who carries 20 bags of groceries up the stairs with his 3 year old on his shoulders - if you know what I mean.

I'm finding it hard to that these days. In fact, I'm finding that every time I do anything remotely "active" (a brisk walk, a 20 foot run for the bus, go up and down the stairs 3 times, etc.) I get all tingly. And sometimes, it takes 5-15 minutes to stop tingling enough to function again (ie drive, eat, whatever)

I'm lucky so far with MS as my symptoms have only been sensation based and I haven't had significant pain or weakness. But the tingling is making me a little nutty. I know I'm suffering from Lhermitte's but that is only when I tip my head down to look at my shoes. I'm on Copaxone (week 3 starts today) and finding it nothing more than a minor nuisance (thankfully). But the tingling...it's making me mad!

Any thoughts or suggestions would be most appreciated.

Best,

MS in Toronto
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Postby Neurorat » Mon Nov 17, 2008 1:44 am

Hello!

I am recently diagnosed, as well, and have just started week two of Copaxone. My only symptoms are sensory, as well.

I have the same tingly sensations, especially when it is really hot or cold. If I can keep my body temperature steady, it is not as bad. Sometimes in the summer I grab an ice pack to keep me cool as I run to where ever I am going. I haven't found a winter solution yet. I'll let ya know!

I am not sure if that small bit helped, but I wanted to welcome you to the board, too.
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Postby daverestonvirginia » Mon Nov 17, 2008 1:33 pm

When I was first diagnosed over three years ago I also had a lot of tingling and did not know if it would ever go away, get better. Good news is for me at least, after three or four months it went away and has not returned. I have been on copaxone for three years now and I also follow the Best Bet Diet. This site helped me when I first was diagnosed to read about all the possible treatments and outcomes that are possible. I guess the good news and depending on how you look at it the not so good news is anything pretty much can happen with MS. So good luck and try and stay positive.
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Postby chrishasms » Mon Nov 17, 2008 9:08 pm

I am someone much farther down the road than you. 10 years past those symptoms.

Copaxone is a huge huge huge step forward. Also I suggest you vaporize pot. Next I suggest you get a RX for LDN form either your GP or Neuro.

All three of those were huge to keeping me good. As soon as I stopped one of them I got worse, and it didn't matter which.

You need to do whatever is bugging you more. Walk everyday and really think about how you are doing it. Eat good. Any advice about eating good is right. If you can run DO IT. Make those muscles work now!!!!!!!!

Do crossword puzzles and keep your mind sharp. Also look into Revimmune, Tysabri, and Rituxan.

Get this bitch early.
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Postby msintdot » Tue Nov 18, 2008 6:38 am

Thanks so much for all of your replies. It's nice to know that there is hope. I'm going to war with this puppy so I'm going to look into all of the meds/diets you recommended. The challenge for me right now is the symptoms. I guess I'm just no in the remitting stage yet...but it sounds like I might be close...it's only been 3 months so far.
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Kindred Spirit

Postby JilPhones » Sun Dec 14, 2008 6:10 am

Hi there,

I read your story with interest. We seem to be in a similar situation and you are positive to as you say "go to war" I have had the diagnosis. Had the tingling in legs hands and feet. Done the Avonex and hated it.
I now maintain a strict regime about maintaining my bowel health.
this is the key to the whole gig. I am convinced. In fact I have proven it.
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Postby Terry » Sun Dec 14, 2008 9:03 am

Hi JP,

I now maintain a strict regime about maintaining my bowel health.
this is the key to the whole gig. I am convinced. In fact I have proven it.


Why do you think this?

Terry
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Postby JilPhones » Sun Dec 14, 2008 11:38 am

Hi Terry,

You ask why do I think this?

I suspected for some time that my bowel health had something to do with my diagnosis. I had several incidents over the years that were bowel related.
I always suffered from bloating and at times had excruciatingly paindful cramps (IBS) I was on anti inflamatory drugs for a while for a sporting injury

When I gave up wheat the bloating stopped and the tingling in my legs stopped also and returned if I had wheat again.

The Kinesiologist I saw about my condition told me I was gluten intolerant and when I researched this further everything really started to drop into place. He also said I had bad Candida and when I addressed this my whole health outlook changed.

I am now symptom free (MS) and have a much better general health and my digestion is massively improved. Also, my skin rashes have disappeared.

The evidence to me is clear in the way I am now.
See my profile and website for more detail if you want the full story.

Regards,

PJ :D
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Postby millysmum » Sat Jan 10, 2009 4:28 pm

Hi PJ I have very similar things going on like the things you are describing, I wonder if you could tell me what type of skin rashes you are talking about.
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Postby ConquerMS » Mon Jan 19, 2009 8:39 am

Your so lucky for two reasons. There are so many things available to you that weren't when I was first diagnosed with MS. Copaxone was not on the market along with all the other MS drugs. So things have come a long way. Plus it looks like your taking a very proactive approach, don't stop searching for answers on how to live a healthy life. You'll see that every little thing matters in how you feel.
http://www.ConquerMS.com
Robert
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