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Old 08-05-2005, 08:57 AM   #1
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Question

Hello!

A little history on me... I woke up one morning about a month ago and my legs were numb - The dr. ran all the tests and two weeks later I was dx'ed with MS. I am starting on capaxone as soon as it is delivered to my house. Now to my question. I am in the very early stages (3 lesions total on brain and spine)and my dr. seems think with the medication I can lead a normal life with no disruptions from this disease. Now I hear how people are bothered by the heat and stress. If I have everything under control with the medication - could that be something that isn't an issue for everyone? I am just wondering if I will feel different at times. So far I feel normal and I haven't felt sick at all. I just wonder if I am going to have to change my lifestyle to accomodate this, or if some people go on and it doesn't effect them as much. Now I understand that everyone is different and there is no way to predict the course of the disease, but in your experience is this possible to feel just like you did before? Does this even make sense?

Thanks!!!

 
Old 08-05-2005, 09:15 AM   #2
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Re: Question

Jenny,
I don't know where you live, but here in Tx., it's impossible to avoid the heat. What I do is just make sure my time out during the hottest part of the day is limited. Just make sure you have a place to cool off quickly. I never really paid attention to it until I had this last exacerbation, so I've stayed inside except for early am and late p m. As you can tell by my screename, I love the beach (for vacations) and have always spent a lot of time in our pool. Right now, I only swim in the evening. From what I understand, the heat makes your symptoms temporarily worse, but should subside once you cool off. I don't know, I've heard others say it "throws" them into an exac. Either way, you can't be terrified of the heat, just respecful. Hope this helped. Stay Cool, Sue

Last edited by beachlover247; 08-05-2005 at 09:16 AM.

 
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Old 08-05-2005, 09:18 AM   #3
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Re: Question

Hi,
So glad to hear that you got a quick diagnosis and treatment plan. It sounds like your doctor is optimistic about you leading a normal life. There's no reason to worry otherwise.

As far as heat and stress - yes, everyone is different, especially on the stress part. What stresses one person may not bother another. Stress is part of living these days. Just be sure to employ proper destressing techniques (deep breathing, stretching, quality down time, etc) and I wouldn't worry about this one.

Heat is a different story. The majority of people with MS react negatively to heat since demyelinated nerve endings do not conduct as well when overheated. In fact, in the 'olden' days, MS was often diagnosed by putting a person in a tub of hot water to see how poorly or well they functioned afterward. Honestly, you will probably have to adapt your lifestyle to not allowing your body to get overheated, but this isn't too hard to do these days with A/C. Some people aren't as affected by heat as others. You'll find out if you're one of those people sooner or later.

Take care,
Julie

 
Old 08-05-2005, 09:21 AM   #4
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Re: Question

Jenny, I was dx last Sept started Avonex in October. I also have very mild symptoms. I only have some tingling in my feet. Sometimes I get scared to think that maybe I will progress as much as a lot of people. But I don't think there are any guarantees that I will. It is possible that this is as bad as it will get. I wish I knew. I hope this is what your message was about. Take care. Julie

 
Old 08-05-2005, 10:00 AM   #5
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Re: Question

jenny,,, first off the crab drugs (the shots) do not heal what has already happened,,, they just try and keep ur MS stable,,, also i have been on 3 diff types,, first i was on avonex, for a yr,, had a bad relapse, went to a new nuero, he switched me to copaxone, which i took for a yr and 8 months,,, also had another bad relapse,, from being in the sun,, i was going to my nephews ball games, about 2 or 3 a week,, and got sunburnt, sitting under an umbrella,,, he put me in the hospital for 4 days on solumedrol iv drip,, which did bring me out of the relapse i was having and stopped it in it's tracks,, he then switched me to betaseron which i have been on now since september of last yr,,, and so far my MS is stable (knock on wood) i have been staying in the house, in the air conditioning mostly,, we are adding on to our house and painted the roof,, and now getting ready to side it,,, i would love to sit outside and watch them do it but i can not do that because the heat is unbearable for me,, and i get sunburned sitting in the shade,, so i can;t do that either,,, MS does effect everyone diff,, i have a friend who also has MS and she has had it for yrs,,, and has 4 kids,, and the heat doesn;t bother her,,, the cold is what bothers her,,, and i love the cold,,, right now in pa where i live it's been in the high 90's for over a month now and this am we finally had a lil rain for the first time in well over a month. and i am ready to move to alaska lol good luck to u! not everyone with MS is the same , but we do have alot of the same things we can share with one another!

 
Old 08-05-2005, 10:28 AM   #6
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gyrl293 HB User
Re: Question

Hello,
I was just wondering if all of the feeling returned back in your legs .. something very similar happened to me ....only I woke up one morning and could not feel from about chest down. Doc's say it should but I'm wondering ....

 
Old 08-07-2005, 11:03 AM   #7
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Katie M HB User
Re: Question

Hi gyrl & Jenny. My MS also started with the lower half going numb. I think it is different for evryone to some degree, but for me, as the months passed, alot of the numbness faded away. My legs are still quite weak, my feet are numb ( but not as bad as at its worst) and I still feel the girdle sensation around my knee and waist, I could go on, but that basicly covers the legs area. All of this started at the end of last year. I truely believe this is my new normal. But I've read alot about different people and their remissions . Some find their old normal again and some create a new version of normal.At times it seems like a game of wait and see. I too am on copaxone and the biggest adjustments I've had to make in my life envolve, resting when my body says rest, stay out of the sun as much as possible ( I'm in steamy south FL), and accept the things I can no longer do(that is the hardest one).I feel that I doing quite well because I realize that it could be so much worse. As a good freiend once said to me " Kate, your better off then some, and worse off then others". I wish the best for you both.

 
Old 08-08-2005, 05:04 AM   #8
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Re: Question

Just remeber the range of disability with this thing -- on the one hand you have Annette Funicello, but on the other you have Montel Williams... Everyone who has it can have a different manifestation of the disease!

 
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