Please introduce yourself to the community! - My MSAA Community

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Please introduce yourself to the community!

SimoneHU profile image
SimoneHUHealthUnlocked
18 Replies

Why not leave a short comment below and introduce yourselves. Give as much or as little information as you like. Feel free to ask your own questions here: healthunlocked.com/write/ms... if there is anything you would like other people's opinions or advice on. This is your community!

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SimoneHU
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18 Replies
TheAuthor profile image
TheAuthor

Hi my name is Ken. My wife Julie has Primary Progressive MS and was diagnosed just over 3 years ago. She use to be such an active and hard working lady but now she has to travel everywhere by wheelchair and has applied for ill health retirement from work.

I do my best to physically look after her but I do have severe health problems of my own and I am very limited. So we are awaiting an assessment by Social Services to see what help she can get. Apart from the usual loss of mobility, one of her biggest issue with MS is the fatigue that it causes. She has medication for this but it does not really address the issue fully.

We have hope that we will cope long term and we also have hope that new medications and treatments can be devised that will give her genuine help with the condition. I want to genuinely and sincerely wish everyone with MS all the best of luck.

All my hopes and dreams for you

Ken

IBIZA profile image
IBIZA

Hi my name is julie and I havent been diagnosed with it yet but the neurologist and doctors think I have ms

TheAuthor profile image
TheAuthor in reply toIBIZA

Hi Julie,

I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. I will keep my fingers crossed for you that your scans come back all clear. Please take care of yourself.

All my hopes and dreams for you

Ken

IBIZA profile image
IBIZA in reply toTheAuthor

Hi ken my scans came back abnormal the hospital think its ms and im getting loads of ms symptoms

unreal profile image
unreal

Hello everyone. I have had MS for 15 years. My real name is karrie, I have 4 children -2 teenagers and 2 less than 10. I fall alot. I just dont know if I am going to make it until graduation

MelissaC71 profile image
MelissaC71

Hi my name is Melissa I am 44 years old and was diagnosed with MS when I was about 21 so I've lived with it for a long time. I I married and have 6 children four teenage sons and two elementary age daughters. I've taken Betaseron since I was about 23 and for the most part I've been fairly stable only in these last few years have I started to decline. I went back to school a few years ago to get a teaching credential and a master's degree and that really impacted my stress level which affected my MS drastically. I'm trying to figure out what to do now as far as work.

ericaallman profile image
ericaallman

I have Ms and I hate it

Fee09 profile image
Fee09

My name is Felicia. I was diagnosed in 2013, after having physical issues for about 6 years before. I am on disability and have been looking for ways to occupy my mind and time. My children are all grown now and I'm not as social as I used to be. What are some things that are recommended to do?

Jaclynn profile image
Jaclynn in reply toFee09

Hi Felecia. I was dxd in 99. I went on disability 3 yrs ago. I was a HS Counslor and loved my job. I do not fix up with hair/makeup very much due to energy level. I have 3 Dachshunds which somedays are the only interactions I have untik my husband gets home from work. Sounds like we're in same boat with needing ideas. Im so ready for Spring. I have a golfcart which allows me to be outdoors which helps me tremendously with my emotions and outlook on life.

Fee09 profile image
Fee09 in reply toJaclynn

My husband is a trucker so spend 4-5 days a week by myself. Other my nurse and PT that come once a week, I have no other contact. We've only lived in our apartment for a few months, so I don't know anyone. I get around with a cane most days or my walker when it gets bad. I try to get dressed and do my hair everyday just to stay motivated

Nutcake profile image
Nutcake

Hello, I am Dottie. I am 67, and have had MS pretty much since my twenties. I was very lucky that my symptoms were rather benign. Problem is that back when I was younger, there were no MRI's. Knowing I had a 50/50 chance of having it, I just went on with my life. Ran three marathons, moved several times with my job, normal stuff. In about 1998, my right foot started dragging, and then, well, there is so much since then! In 2009, I was diagnosed with Chronic Lymphocytic Leukemia. A double whammy for sure :) Lots going on for me, but I will say that I am happier than I have ever been in my life.

jaylevy profile image
jaylevy

Hi, my name is Jay. I am a 78 y.o. male I have ms since 1980. I am currently on Avonex. I am now getting concerned. My ms is now seem to be getting worse. I live by myself and it is getting harder for me to do anything (cooking, cleaning etc.)

dr92636 profile image
dr92636 in reply tojaylevy

Hi Jay! I understand what you mean. I am 80 and have always been

very active. I talked to my doctor and told her those same things

and she said as I age the MS will get worse. We don't have the

stamina we used to have. Now I just pace myself and do what

I can till fatigue takes over and put off the rest till the next day!

Hang in there and don't give up! dr92636

Kee800 profile image
Kee800

Hey, my name is Margaret, in 2015 , my husband Ken was diagnosed with MS. Prior to that he was a strong hard working trucker, and he earned a living roaming the countryside. Now it's a struggle just to roam our backyard. BUT!! He's doing it with God and some really good people he has placed in our path. Take this website, for example. We are sure that we will encounter some good advice from the members here. So thanks in advance and let's try to make the best of this journey that God has allowed us to travel. "For whatever reason"!!!

REDLIPS44 profile image
REDLIPS44

Hello my name is Cheryl and I have had MS since 1998. I have 3 daughters and I thank God they were teenagers when I was diagnosed. Was doing good for 14 years a lot of people didn't even know I had MS then when I moved to Charleston SC things started going down hill with my walking, I use a rollator. I use anything that will help me. I have done the LEMTRADA and going in for my 2nd infusion in Jan. 2017. I feel very lucky that I can still drive and am mobile. Good luck to everyone.

Debbieham profile image
Debbieham

Hi my name is debbra and I've had ms for about 20 yes now. My biggest trouble right now is I'm so very tired 24\7, and heat intolerance. Its really worse than it has ever been. Which has cause my depression to be very bad. I am on a limited income but I'm going to try and get a pilot vest. Does anyone here use one asnd to they really help?

Debbieham profile image
Debbieham in reply toDebbieham

Polor vest . My auto correct is not helping ha ha

IBIZA profile image
IBIZA

Hi all I have clinically isolated syndrome was diagnosed last Feb,now I've got numbness in my left shoulder top of my left arm and my shoulder blade is this connected or is it something else

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