topic Re: multiple sclorosis in Wellness

multiple sclorosis

Pooky1 — Fri, 21 Jul 2017 10:09:52 GMT

anyone with ms knows this time of year can be just aweful because of intense summer heat. it makes us tired weak and totally messes with our balance and walking. a cold shower or a dip in a pool can help and ac is a must have. i have had ms since april 2002. good luck to all of you dealing with summer heat.

Re: multiple sclorosis

piperbay — Fri, 21 Jul 2017 10:33:53 GMT

My thoughts are with you. Don't know if you have ever tried a Black Ice Cooling Collar but it does help. It will keep you cool for an hour and half and doesn't get soggy. I bought one for a dear friend who has nerve damage and can't take the heat at all. She said it was a lifesaver.

Re: multiple sclorosis

evelyner — Fri, 21 Jul 2017 13:10:16 GMT

I hope you will find a way to cope. It sounds hard. ❤️

Re: multiple sclorosis

Poodlepet2 — Fri, 21 Jul 2017 13:37:17 GMT

@Pooky1, in one of my MS magazines, somebody suggested ice packs on your wrists...

We live in SW Florida, and the heat and humidity machine is cranking. I keep the AC on 70 (our bills are high, but oh well)....but what is really helping me are Lasko tower fans-bliss!

IStaying hydrated is a must: icy cold water (I make mine like the consistency of sleet) is amazing for cooling you down.

Stay cool friend,

Poodlepet2

Re: multiple sclorosis

Perkup — Fri, 21 Jul 2017 14:17:57 GMT

A friend lived a pretty full life into her early 80's in spite of MS. They had lived in South Dakota, but moved here to S. E. Louisiana some years ago to be near children. She truly suffered from the heat and so often mentioned that she wished she could move back north. I wish God's blessings on you as you struggle through the summer months.

Re: multiple sclorosis

jubilant — Fri, 21 Jul 2017 20:29:07 GMT

One of my Dad's hospice nurses used one of those scarves you wrap around your neck and snap it in the air to revive it. She gets bad hot flashes and says they really help her. She got hers at Wal-Mart, I think. I am going to buy one for DH as his cancer treatments are giving him terrible hot flashes. They are keeping him up at night they are so bad.

I hope you get some relief soon. Am sorry you have to deal with the MS. My prayers and thoughts to help you get through the getting through".

Re: multiple sclorosis

esmeraldagooch — Sun, 23 Jul 2017 16:18:42 GMT

Pooky, Have you looked into stem cell transplants to help your MS. My nephew has had MS for 20 years and was walking with a cane but mostly wheel chair bound.(age 37, got it in high school) With in two weeks he was walking without a cane and is now out golfing , squatting by the camp fire cooking marshmallows, bowling and enjoying life two months later. His neurologist was impressed by his condition and is going to do a scan next time he's in. He had his treatment in Long Beach CA but there is another one in San Diego he could have gone to also.

It cost $16,000 and they used his own cells and put them back into him. He stayed in the area for 5 days in case there was a problem but it only took a few days for the treament.

Re: multiple sclorosis

hyacinth003 — Tue, 25 Jul 2017 20:59:08 GMT

My mother had MS and it used to drive me nuts that she actually disregarded the heat. I told her over and over that heat was a cause of MS symptoms to be worse, but she didn't feel it. I tried to tell her that just because she wasn't perceiving it, didn't meat it wasn't affecting her.

Before she was diagnosed, she and my dad visited Hot Springs, Arkansas. While there, she passed out after being in one of the springs. Looking back, it makes sense.

I often think she must have had some brain changes with how she responded sometimes to dealing with the MS. She seemed to disregard things and that just wasn't like her over her lifetime.

She passed away at 77 from complications. Many things I wish I had done differently.

Praying for anything that will help this disease.

Hyacinth

Re: multiple sclorosis

hyacinth003 — Tue, 25 Jul 2017 21:00:12 GMT

@esmeraldagooch wrote:
Pooky, Have you looked into stem cell transplants to help your MS. My nephew has had MS for 20 years and was walking with a cane but mostly wheel chair bound.(age 37, got it in high school) With in two weeks he was walking without a cane and is now out golfing , squatting by the camp fire cooking marshmallows, bowling and enjoying life two months later. His neurologist was impressed by his condition and is going to do a scan next time he's in. He had his treatment in Long Beach CA but there is another one in San Diego he could have gone to also.

It cost $16,000 and they used his own cells and put them back into him. He stayed in the area for 5 days in case there was a problem but it only took a few days for the treament.

His own stem cells? Wonderful! God bless him and any improvement in his disease.

Hyacinth

Re: multiple sclorosis

esmeraldagooch — Tue, 25 Jul 2017 22:33:24 GMT

Yes, They treated his own stem cells. Here they are.

Re: multiple sclorosis

cater — Sat, 29 Jul 2017 17:10:08 GMT

Esmeraldagooch, if you don't mind sharing the information could you tell me were the place in San Diego is located or the name of the place that they do the stem cell transplants. I would be very much interested to read about how they do this and what all is involved. $16,000 seems like a lot of money but to be able to get ones life back and to able to function the way a person used to be I think it is a very fair price. Thank you for posting that they are even doing this.

Re: multiple sclorosis

noodleann — Sat, 29 Jul 2017 17:32:55 GMT

@hyacinth003 wrote:
My mother had MS and it used to drive me nuts that she actually disregarded the heat. I told her over and over that heat was a cause of MS symptoms to be worse, but she didn't feel it. I tried to tell her that just because she wasn't perceiving it, didn't meat it wasn't affecting her.

Before she was diagnosed, she and my dad visited Hot Springs, Arkansas. While there, she passed out after being in one of the springs. Looking back, it makes sense.

I often think she must have had some brain changes with how she responded sometimes to dealing with the MS. She seemed to disregard things and that just wasn't like her over her lifetime.

She passed away at 77 from complications. Many things I wish I had done differently.

Praying for anything that will help this disease.

Hyacinth

The OP's experience with heat is common to many, but definitely not all people with MS. Ambient heat, like the weather, may be fine for some MS people like your mother, and for me. I find the warmer weather, which I never liked before, a comfort and a tonic, even if I'm sweating buckets.

Immersion in very hot water, like a hot bath or hot springs, is quite a different thing. I don't take baths, showers only, and my sauna days are over. I've never passed out, but I'll need a lie down after a long hot shower, it makes me feel so bad.

But these symptoms are TRANSITORY. You recover. I have never read anything to suggest that they impact the disability course of MS.

Cognitive and personality changes are also not uncommon in MS. Your mother's apparent changes may have been due to MS, older age, or something else.

If there is any disorder in which "your mileage may vary," it's multiple sclerosis. I'm confident that one day they'll find that what has been called MS is actually several different neurological conditions, with different natural histories and different treatment requirements. Hopefully one day MS, like lupus, RA, and other autoimmune disorders can be prevented or cured.

Re: multiple sclorosis

Pooky1 — Mon, 31 Jul 2017 11:04:46 GMT

i thank all of you for your comments and concerns and prayers.much appriciated.