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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


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





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