A Setback: I have been experiencing... - My MSAA Community

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A Setback

TonyiaR7 profile image
21 Replies

I have been experiencing problems with regulating my body temperature. On Father’s Day, I lost my ability to walk or stand; my legs kept buckling underneath me. Maybe I was doing too much, anticipating a visit from a good friend. But God had mercy on me. I am standing and moving about - walking is challenging. Returned to PT. Pray I will start to get more sensation in my feet and respect how the heat now impacts me. I appear more heat sensitive than last year. My friend from undergraduate school, my maid of honor (best lady) came for a visit and helped renew my spirit. It was a good visit. We both needed to deal with some heart ache and have good laughs. These type of flare-ups are scary and humbling. After she left, my ultrasound proved I didn’t have a mass in my breast, just some prominent tissue. Praying the entire time of the exam and waiting on the doctors verdict, and hearing good news. A big emotional roller coaster. I need to rest and pray; thanks to all of those who pray for me. You are in my thoughts and prayers.

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TonyiaR7 profile image
TonyiaR7
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21 Replies
Midgey_Midge06 profile image
Midgey_Midge06

The heat is worse on me this year too. I dunno y but its draining the life outta me. My neuro prescribed me a wheelchair yesterday

TonyiaR7 profile image
TonyiaR7 in reply toMidgey_Midge06

I think it due to the weather swings from 60/70 to 80/90, all in one day. Back and forth.

RoseySawyer profile image
RoseySawyer

The heat and humidity this year is crazy!!!!!

Kellyj44 profile image
Kellyj44

Hang in there my friend. Sending my prayers up for you.

I know what you're going through. I've been there!

TonyiaR7 profile image
TonyiaR7 in reply toKellyj44

Thank you. Unfortunately many of us have been there. Not my first time. Still scary and humbling.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I also am very heat and cold sensitive. For heat I either hibernate inside or if I have to be out in the heat, I carry a small squirt bottle of water. It always cools me. Also, as a suggestion, stay super hydrated, especially in the heat, I always have a bottle of watered down sugarless Kool-Aid or ice tea with me. Make at least 12-16 bottles at a time. When I enter a store with my water and get the look, I just tell them I have MS and will need to take medicine while I'm shopping.. It's amazing how many people just don't know about MS. Hope you feel better. MSAA has cooling products that are very helpful and you may qualify for free items. I received the cooling vest last year, It's great! I wear it when I go grocery shopping! mymsaa.org/msaa-help/coolin...

TonyiaR7 profile image
TonyiaR7 in reply toCalfeeChick

I love the cooling vest!!

jimeka profile image
jimeka

Oh Tonyia, you have been on the emotional roller coaster, it was maybe that, that caused the legs etc to not work. Anyway good news on the ultra sound, big relief. We have heat at the moment, in the 80’s which is hot for the uk, but fortunately no humidity. How you guys survive with 90+ I do not know. Thanks for sharing your good news with us, take care, blessings Jimeka 🦋 🍫 🤗

TonyiaR7 profile image
TonyiaR7 in reply tojimeka

I never knew hot it could get in the US summer until I moved from Long Island, New York, into inland. We lived not far from the ocean with trees for shade. I lived in the MidWest and I was miserable, just winter and hot summer.

janetb1968 profile image
janetb1968 in reply tojimeka

U are so right hun it's very hot at the mo 😎😎😎😎. Been to Royal Preston again for the Tysabri 5th infusion today . Luckily the staff in the day treatment centre had fresh air blowing in and lots of fans xxxxx 😎😎😎😎😎

bxrmom profile image
bxrmom

Glad you had some good news on your ultrasound TonyiaR7 The humidity really does me in and I hibernate in the house when it is up there. Tomorrow we have another heat advisory for 100+ degrees with humidity through Saturday.

Jessie

TonyiaR7 profile image
TonyiaR7 in reply tobxrmom

Yes. It looks like hot weather all through the 4th and beyond. Maybe a break mid-July. I will be hibernating indoors. I can not afford another setback or worsening symptoms. Ice vest on if I must go out.

TonyiaR7 profile image
TonyiaR7 in reply tobxrmom

Thank you. I am glad about the good news. I thought I was going to stop breathing waiting for the doctor to give me the good news.

hairbrain4 profile image
hairbrain4

Glad you got some good news! This heat is my biggest problem in the summer. The Arkansas heat & humidity drain the life out of me. I grew up in CA near the beach & didn't have to deal with this. But I stay b in a/c, wear chilling vest & hats.

Linda3579 profile image
Linda3579 in reply tohairbrain4

Hi Hairbrain,

I grew up in Santa Barbara. I miss those ocean breezes. Where did you grow up?

Thank goodness for AC. Linda

hairbrain4 profile image
hairbrain4 in reply toLinda3579

I grew up in Long Beach. I do miss the beach from time to tiime. I especially miss walks at Balboa at night.

Linda3579 profile image
Linda3579 in reply tohairbrain4

Yes, really beautiful there. I had a friend in Newport Beach so spent lots of time there. Take care, and try to stay cool. Kinda

TonyiaR7 profile image
TonyiaR7 in reply tohairbrain4

Thank you. I miss the ocean. It is so relaxing and restorative.

Linda3579 profile image
Linda3579

Congratulations on your good news. That must have been so scary. It’s hard to deal with more, on top of the MS. I have been more sensitive to the heat this summer too. Sometimes I make the mistake of getting to hot. Always a Big price to pay.

It’s just best to hibernate when you need to. Blessing on your good news. Linda

TonyiaR7 profile image
TonyiaR7

Thank you

janetb1968 profile image
janetb1968

💕💕💕💕💕🙏🙏🙏🙏🙏🙏

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