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Old 03-21-2007, 09:51 AM   #1
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Just Diagnosed...What Should We Expect? And About Heat, Does it Affect You A Lot?

My bro, 27, just was diagnosed with MS. Symptoms at the moment were just numbness in the fingers and dizziness. Those of you, young & old, who have been dealing with it for as long as you have, what do you do? Is it REALLY debilitating? How do you cope?

And with regards to the heat, is it ture that is progresses the disease if you're exposed to it for long periods? What is characterized as long periods anyway? And how do you minmize the stress? For you and your family. Thanks.

 
Old 03-21-2007, 10:10 AM   #2
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Re: Just Diagnosed...What Should We Expect? And About Heat, Does it Effect You A Lot?

One of the earliest tests to determine if a patient had MS, was to stick them into a hot tub, and see if their symptoms increase. If they did, you had MS.I do not think that heat injures anyone with MS, but it does cause symptoms to increase though.Also, MS does not afflict people born in the hotter parts of the US, if they spent the first fifteen year of their lives there.
Most people with MS live fully functioning lives.
There too many symptoms both, physical and mental, so it is impossible to predict the course of the disease in anyone. MS is a very complicated disease involving the immune system, and researcher's are having a hard time unraveling it. The disease is the leading cause of central nervous system myelin damage. The damage occurs sporadically in non symmetrical patterns across the brain which also complicates predictions on the course of the disease in any one person.
I would recommend that people with MS attend support group meetings. To find one, contact the MS office nearest you. They also are a source of information on the disease. I did that for years, and had a great time. you learn a lot about the medical community, the variety of symptoms, and can compare various treatments, and make friends. They were the best meetings, and I looked forward to them.

 
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Old 03-21-2007, 11:42 AM   #3
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Re: Just Diagnosed...What Should We Expect? And About Heat, Does it Effect You A Lot?

Thank you so much for the info. Actually, just yesterday h told us that hot showers causes a tingling/numbness in the fingers. I guess, sure thing, it is MS.

It's very hard to accept, partly b/c he is so young, but also b/c it is incurable. I guess there are advantages for younger diagnoses that older. There's more hope & possibility. He is very optomistic about it, & really shows no signs of depression. But it is the initial shock of it all that needs adjusting to. I still can't believe it. But we'll manage somehow. I'm also worried about late night partying & having him get up for work the next day. I understand that a full night's sleep is always a must?

 
Old 03-21-2007, 05:34 PM   #4
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Re: Just Diagnosed...What Should We Expect? And About Heat, Does it Effect You A Lot?

Hey there, sorry to jump in so late. I am impacted heavily by heat, I literally "wilt" and lose strength, start losing my balance and then I get attacks if I am not immediately cooled with a drink, sitting near a fan, standing in the shade, etc.

I grew up in San Diego, which I guess is not that hot, and today live in Mission Viejo (Orange County, south of Disneyland). I will never live in Arizona, New Mexico, Texas... anywhere hot. Just can't do it.

I take cooler showers, cooler baths... I will never again go in a hot tub or sauna. I miss them, but I am healthier without MS attacks, so I will avoid them.

MS is not the end of the world... seriously. I think the idea of a support group is a good idea... maybe I wll suggest it to my husband as well... He hates the MS but (fortunately) doesn't hate me. Maybe they will help him cope....

 
Old 03-21-2007, 06:25 PM   #5
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Re: Just Diagnosed...What Should We Expect? And About Heat, Does it Effect You A Lot?

Hi there. I think Michael gave you really good advice. I too am very heat senstive, however having heat sensitivity does not always mean MS. My father has Parkinsons disease and we have some similar symtoms. I cant tolerate the heat, and that was one of the first symtoms that I noticed...last summer, I was "wilting' from hot showers, humidity, and just being outside...I live in NJ, not especially hot, but we had some 90+ degree days...then, in late AUgust, I had the tingling, numbing hand..that led me to a doctor who said Carpal Tunnel..I knew, deep down, it wasnt..and after the tingling got to be painful for two weeks, I wound up in the ER. There, I had a CT scan (to rule out a pinchd nerve) which led to a referral to a Neuro, which led to an MRI, which led to 50+ legions on my brain (none were active, so that meant they had been there for some time) and within a month, I was on Rebif, with a full fledged dx. Its now been 7 months. Im not any better, the tingling never went away, but Im not any worse...and although the first few months on Rebif were H__L...I adjusted to it, and now its a part of my life.

Let me tell you this, you sound really nervous. Your nervousness will affect your brother, so if you have a hard time dealing with this, stay away from him..like Michael said you and your family, and your brother especially should join a newly diagnosed support group. I made the mistake of joining a group where everyone had had MS for years..like 20+ years. Most were in wheel chairs, everyone was 20 years older than me..and it was the most depressing thing in the world. I cried for 2 weeks afterwards. Then, I contacted the National MS socieity who gave me another group to check out..this one was for newly diagnosed people..everyone was about my age..no one had mobility issues and everyone was talking about the different drugs, etc..things that I was facing...they became my lifelines.

I want to add that heat, and hot showers DO NOT CAUSE MS, nor do they make the disease progress...what they do, is aggravate the symtoms...so they are advised to be avoided....now, partying and staying out late will not hurt MS, although if your brother starts any MS Therapy drugs (known as CRABS- Copaxone, Rebif, Avonex or Betaseron) then he will say goodbye to his drinking days...you can drink very small amounts of alcohol while taking these, but for most people, the side effects arent worth the beer or glass of wine...the biggest thing that your brother can and should do is get plenty of sleep, stay really hydrated (with water) and avoid stress and stressful people/situations....stress is probably the number one factor which brings on relapses in MS..lack of sleep is the second..
And, now with that said, I am going to add this: Ive had MS for 7 months that I have been dx...probably had it much longer and didnt know it...Im heat senstive, and Im exhuasted most of the time. I still work a 40 hour a week job..and just Friday, i graduated Valedictorian of my University at age 40 with a 4.5 GPA. Tomororw, I leave for Cancun for a much needed vacation. Yes, I am scared to travel with medication, espeically syringes..and yes, IM afraid of the heat issues, but guess what? They have both an ocean and a pool, and I plan to stay cool when I am outside...
Best of the best to you and your brother...tell him to introduce himeslf here, we are a friendly crowd, and can answer many questions and offer support.
Nikki

 
Old 03-21-2007, 06:55 PM   #6
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Re: Just Diagnosed...What Should We Expect? And About Heat, Does it Effect You A Lot?

My understanding of the "heat factor" is that myelin is less effective at higher temperatures. Once it cools down, it resumes it's prior effectiveness. I've never heard or read that heat does permanent damage. Of course, MS is utterly unpredictable, so never say never!
I was diagnosed about 2 years ago, at age 48. That is "old" for an MS dx (but I now know I've had sx for 15 - 20 years). The shower thing is one of my problems. I've had 2 periods of time where an arm would completely fall asleep when I was in the shower (first time it was the right arm, second time it was the left arm). I'm happy to report both arms are basically fine now. Those "spells" lasted a few weeks, then went away.
A week from Friday I turn 50. I still work full time (sometimes more than 40 hrs a week!), I travel between Washington, DC and Phoenix at least once a month and do many other trips (leaving in the morning for Mpls, KC, MO, back to DC) and do a decent job of keeping up with my friends that are in their 40s and 50s. Most of my business associates don't know I have MS.
It is a BIG blow to get diagnosed with MS. Watch your brother, he might hit a point where he freaks out a little. But MS, while incurable, is NOT a death sentence. We keep on going, and many of us are relieved to have an explanation for our odd symptoms!
Be an ear for him. Let him talk about it, if he wants to. But please, don't stop him from living his life. Don't insist he change. If and when he needs to slow down, he'll really appreciate a non-judgmental person to confide in.

 
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