Multiple Sclerosis

kimblebee said:
I'm not the OP but I can try and explain the numbness.

You know when you sit on your foot or leg too long and it falls asleep? Not just tingly but dead dead? It's so asleep that you can't control it and it just flops around until the feeling comes back? That's what the numbness in the legs/arms feel like, except the feeling may not come back for a week, a month, never.

I'm not trying to be a drama queen..we learn to deal with it. But, that's what it feels like. You see your hand closed around a fork but you have no sensation of it being in your hand.
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I have a condition similar to MS (transverse myelitis ) and this is a perfect description !

This is my "normal" and I have learned to make adjustments.

OP I do understand what you are feeling now and I am so sorry you are going through this. Hopefully your Dr. Will have answers soon.

Sending well wishes your way!

Terri
 
Mizzoufan said:
I'm home so tired. Just trying to rest. I have a follow up MRI in a couple of weeks. Thanks again for all the prayers and well wishes.
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So glad your home, sorry I missed it yesterday, had a bit of a bushfire emergency here. All good now.

Much easier to rest up at home than in hospital, remember to ask for help or accept help if offered, don't be stubborn and just take it easy, your body needs rest
 
minneylovesmicky said:
So glad your home, sorry I missed it yesterday, had a bit of a bushfire emergency here. All good now.

Much easier to rest up at home than in hospital, remember to ask for help or accept help if offered, don't be stubborn and just take it easy, your body needs rest
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This is a very important point..ask for help if you need it. I am stubborn and always insist that I can do everything, even when I really do need help. It's been hard, but I have learned to ask for help when I do need it. It's not an inconvenience, people will be happy to help.
 
Just wondering how you're doing Mizzoufan. Been thinking about you every day and glad you're home from the hospital. I spent a week there Thanksgiving week with pneumonia so I totally know how you feel about being home. :hug:
 
My uncle was diagnosed with Primary Progressive MS in his early 20's, much younger than most diagnosed with this type of MS. It's now secondary progressive, but he still travels and gets out as much as he can, usually a couple times a week. He just got back from visiting his son for a few weeks over Christmas. He's 75 years old now, stubborn as a mule, and refuses to let MS beat him. I think that's the key to this disease. If you succumb to the fear, it owns you. It's not a death sentence. My uncle is proof of that.
 
Sargeant Tibbs said:
My uncle was diagnosed with Primary Progressive MS in his early 20's, much younger than most diagnosed with this type of MS. It's now secondary progressive, but he still travels and gets out as much as he can, usually a couple times a week. He just got back from visiting his son for a few weeks over Christmas. He's 75 years old now, stubborn as a mule, and refuses to let MS beat him. I think that's the key to this disease. If you succumb to the fear, it owns you. It's not a death sentence. My uncle is proof of that.
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Many people live out a full life with MS but please don't think that will to live and positive attitude can beat a disease if the disease wants to take you badly enough. I and many others have proof of that and it's a disservice to those who have fought valiantly and yet succumbed.
 
AnnaFloridaLover said:
Many people live out a full life with MS but please don't think that will to live and positive attitude can beat a disease if the disease wants to take you badly enough. I and many others have proof of that and it's a disservice to those who have fought valiantly and yet succumbed.
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Doesn't mean you succumb to fear. A positive attitude also helps you cope..
 
AnnaFloridaLover said:
Absolutely but to say it is not a death sentence and if you don't not succumb to the fear it won't own you well sometimes, sadly, that isn't true and it really is a disservice to those who fought to the end just as hard as anyone else.
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It doesn't diminish them or their fight. :hug:

You give it all you've got, it's all anyone can do. Every day is a gift...
 
My aunt has had MS for YEARS. Not sure what type she has (likely one of the less severe forms) but while she definitely has her ups and downs, she's travelling the world and leading a pretty active life for someone in her shoes. She's done very well and it hasn't limited her as much as I'm sure she thought it would.
 
Hey Mizzoufan! I've been thinking about you since you started this thread. Glad you are home now! I don't have MS but I do have an autoimmune disease. You will probably gets lots and lots of advice from different folks, but in time you will figure out what works best for you and your body. And that is all that matters! 'You do you'! It may take some time but you will find your own best practices so that you can feel your best. And remember that we are all cheering for you! :cheer2:
 
AlohaNow said:
Hey Mizzoufan! I've been thinking about you since you started this thread. Glad you are home now! I don't have MS but I do have an autoimmune disease. You will probably gets lots and lots of advice from different folks, but in time you will figure out what works best for you and your body. And that is all that matters! 'You do you'! It may take some time but you will find your own best practices so that you can feel your best. And remember that we are all cheering for you! :cheer2:
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Was totally nodding my head while I read this. Do what works for you, everyone's experience is different and shouldn't feel bad that they don't travel the world and seize every moment of every day.
 
AnnaFloridaLover said:
Many people live out a full life with MS but please don't think that will to live and positive attitude can beat a disease if the disease wants to take you badly enough. I and many others have proof of that and it's a disservice to those who have fought valiantly and yet succumbed.
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I never said a positive attitude cures a disease. His attitude towards the disease is that he isn't going to let it best him. I'm relaying my uncle's attitude to the OP. He has had severe MS for nearly a lifetime - 53 years.

He believes how he handles what life has dealt him will determine the quality of life he has. It would have been a disservice to his family, in his opinion, to live in a perpetual pity party. He has episodes of despair and depression, times when he sends my aunt away in tears because the MS is talking, but he doesn't let that dictate how he will spend his time left on this earth. Life is too short for all of us.

I could list individually how often he was in the hospital last year, the cath issues, the yearly pneumonia, the times he's recently nearly choked to death, the falls, and the falls, and more falls, the confusion, at times the inability to talk, and countless other issues, but to what purpose? That doesn't help the OP. He doesn't focus on that, and he doesn't want his family to, either. He suffers, but he is a proud man, and a stoic one. He despises a martyr.

He's lucky to have my aunt, who takes care of him, and four grown sons who will drop everything in a heartbeat to be there for him. A sister (my mother) who adores him, and grown, successful grandchildren. In the end, he won't be remembered for having a disease, but rather for being a positive force that has shaped generations of our family. In that sense, he wins.
 
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