Multiple Sclerosis...family/friend, check in here

[KimRaye]

Annually, if not more often, I'm reminded of this disease.

For probably over 15 years now, I've donated to a friend's effort in the MS Walk. His young DW (now mid 40's) has MS and, the three of us worked together a long time ago.

Since then, my DH's sister has been diagnosed with this (advanced MS) and, my brother's father-in-law as well, both are now in their mid-50's.

Trust me when I say that individual donations run thin when everyone you know (practically) is walking/running for this cause or the other but, without asking for anything from anyone, can I just remind people to visit www.msillinois.org , if you're so inclined? Granted, this is my local chapter but, from there, you can enter and donate to your own hometown chapter, individual walker, whatever. Our local MS Multi City Walk is Sunday, April 6th, at various sites throughout the state.

If I could, I would elaborate on the 3 wonderful, loving people I know with this disease but, you probably know someone yourself with this disease also.

Personally, I did just want to mention that my friend's DW is pictured on the pamphlet for this year's local walk!!! Not only does she continue to impress me by helping at each year's walk but, so does her DH and 2 DS's, who walk, ride, skate, organize, mark paths, etc. every year, for her, and all the others!!

Thanks for reading.

Kim

mods, if it needs to be deleted, I understand but, I hope I stayed within the guidelines.

 

[Gail T AGAIN]

We are having a walk for MS in September in Mass. I should be doing it, I have MS but I am denying that I have it so I don't get involved. I would also put this posting on the disability board, I bet you will get alot of responces there. thanks for all your help, I should be ashamed of myself.

 

[wovenwonder]

My cousin Bonnie, 41, is wheelchairbound with this disease. She has a hydrolic lift to lift her from a chair to the bed, etc. She also wears a cathetar -- as she cannot control her bladder.

Over the past 10 years it has taken life as she knew it. So sad!

 

[Gail T AGAIN]

Originally posted by wovenwonder
My cousin Bonnie, 41, is wheelchairbound with this disease. She has a hydrolic lift to lift her from a chair to the bed, etc. She also wears a cathetar -- as she cannot control her bladder.

Over the past 10 years it has taken life as she knew it. So sad!

Those are the things I try to block out. I think most people with this disease would rather not hear it. We don't know what the future holds for us but that thought is going to be in my head all day. I feel for her at 41 but I get scared. I wish someone would now switch this to the disability board

 

[Luckymommyx2]

I just came back from my yearly check up with my neurologist at John Hopkins. He had wonderful things to say about my MS and the overall advances being made. It's most important to keep a positive attitude. I've only had MS for 3 1/2 years but I not let it stop me doing anything at this point. I read up on it, found the best doctor I could, and started medication immediately. I know being diagnosed even 10 years ago is a lot different than being diagnosed today.
I will be walking with the rest of my family at our local MS walk next month. Anyone who can come out...join us!!

If there are and DIS'ers that need to talk more about their MS or someone they know with MS just PM me!

 

[Lanshark]

My mother was diagnosed at 21 and had me, against doctors recommendations, at 24 in 1960. From my earliest memories, about 1963, she was wheelchair bound and had no use of her legs and right arm but slight use of her left. She died at 38.

From what I have researched though, the treatments are light years ahead of where they were in the 60's and continue to improve yearly.

 

[luvwinnie]

that if a relative has MS or ANY autoimmune disease you are at higher risk for ANY autoimmune disease, not just MS. I have an autoimmune connective tissue disease (lupus-like but not quite). Also be aware that if you have endometriosis (I do) you are 6 times more likely to have MS or lupus.

 

[BethR]

Gail T Again - you almost sound like me.

I have MS - probably have had it for about 17 years or so. I was diagnosed 3 years ago. But so far, I have had a very benign case. I have had only 2 major flares and all the problems that were associated - partial loss of vision, tingling, and some muscle weakness - are resolved. And I know exactly how you feel about not wanting to hear about "too much." I do not surf the 'net looking for information nor read too much. Even the quarterly publication - MS Life(?) - makes me nervous sometimes.

But I have decided that so far I have been VERY blest. And so I do choose to participate in MS fundraisers. I do the mailing campaign near Christmas. I have not walked, but it is because it is usually at a time that I have something else going on (this year's is the same weekend as Sibling's Weekend at our DD's school and we will be taking her younger sisters up to visit.) Trying to fundraise is my way of saying "Thank God!" - and hopefully, if things DO get bad, perhaps some of the money that I have helped raise will help find an answer to something that will benefit me.

Best of luck to all who are going to walk this year!

 

[Denine]

Both my dad and his brother have MS. My dad has had a long, slow decline and my uncle a much faster progression. He has been w/c bound for some time.

To the previous poster: my dad has MS, my mom has lupus and diabetes. I have endometriosis. My outlook doesn't look to pretty does it?

 

[wovenwonder]

So sorry if my blunt description hurt any fellow DISers with MS or one's with loved ones' with this horrible disease. That way not my intention.

My cousin has a very RARE form of progressive MS. Many people that have MS never even have any visable symptoms and never will. We need to find a cure for everyone though!!!!

sorry

 

[mamajoan]

Gail T.. sorry you are having a hard time.. it is understandable.

I think that Kim is AOK to post this on the CB.. alot of folks here need to have a brush with what MS is all about.. it is good info.
You GO GIRL!!!
Unfortunately, I have several friends with MS. They are in various stages and progressions of MS.
To all of you facing this dx.. God Speed and God Bless. It is one of the toughest diseases to deal with on a daily basis. Have courage and know that there are alot of out in the world who
"got your back". We wish there was more we could do to show our support.

Joan

 

[Robin]

I am 23 and was diagnosed with probable MS two years ago, I have had symptoms since I was about 13 (I was diagnosed with Dystonia back then). I have not had a flare up in almost a year (knock on wood) and try to live everyday to it's fullest. My DD is almost 5 and knows when Mommy is having a bad day... My symptoms mostly effects my lower body and hands. I tire easily and often use my electric scooter when going out for more than an hour or two at a time. I find that by conserving my energy I can live a pretty normal and full life.

I tend to stay away from MS groups and do not seek information about it... I guess ignorance is bliss. MS is too unpredictable to try to map your life out. I remember when I told my neuro that I was pregnant he was less than thrilled and sent me to the Mayo Clinic for advise.... I didn't like their advise so I have a wonderful happy healthy child now.

MS runs in my family. My aunt is 57 and was diagnosed about 5 years ago but had the same kinds of symptoms as I did in her late teens and beyond. I have a cousin that is currently going through the diagnosis process now, sadly the odds are that he also has MS.

I would like to participate in MS fundraisers and activities... but am waiting until I am better equipped emotionally to handle it.

 

[classicpooh4]

One of my sisters has MS. She was diagnosed in the last year. I really know very little about it. Since we were adopted to separate families as small children, I don't have much contact with her. I know she has been hospitalized several times, and also has lupus.


Pokie

 

[December99]

There have been several people in a community I grew up in that have been diagnosed with MS. There is now some ongoing research trying to find if there was anything in the community that contributed to this "outbreak". One family had a mother diagnosed, then all three daughters have been diagnosed and it is my hearing that now the granddaughters are being diagnosed and I think there are 4 or 5 of them.

I'm sorry for all that you all that have this disease deal with and put up with - it's similar to those with cancer, they try to fight but are never sure of the outcome or their lives.

 

[luvwinnie]

YOu are getting it from both sides! Just be aware of any early symptoms...early dx is important in autoimmune diseases.

 

[grinningghost]

I was diagnosed with MS in 1990. I've had some really bad episodes, but I always manage to bounce back. I'm always happy to hear about people going to bat for those of us with the disease. A big heartfelt thank you is in order.

 

[catsrule]

There is a 90% chance that DH has MS. If he does, he most likely has had it since his late teens/early 20's. He is in his early 40's now. Fortunately, so far, he has the mild version which is often in remission.

 

[RoutemanDan]

My Father fought Multiple Sclerosis for 17 years.He lost the battle in February of 2000.
My thoughts are with those who have this and are dealing with it..

 

[k8rkate]

Greetings!

My name is Kate Kennedy and I have M.S. Since I was diagnosed in 2001, I've been looking for a way to help folks who are newly diagnosed and looking to learn more about living with the disease.

Happy to report I am currently working on a membership-based website that will provide the latest advice, online tools and access to research and products in one convenient place.

While I believe the idea to be a good one, your feedback is critically important to me. I've developed an online survey and it would mean a great deal if you would take just 10 minutes to complete it. In exchange for your time, I'd like to offer you a free one-year membership and a $10 gift certificate good for merchandise sold in our online store.

You may access the survey by clicking on or copying/pasting the following URL:

http://www.zoomerang.com/survey.zgi?p=WEB2HQV4G8QB

Many thanks for your time and interest!

Sincerely,

Kate Kennedy

 

[DwarfMaster]

My father was diagnosed with MS in 1997, he passed away 5 years later. He was wheelchair bound within a year, lost all muscle control very quickly as well as his vision & voice. He wasn't able to speak for nearly a year before he passed away.

I also have a friend who know about her MS for nearly 15 years. She has no symptoms ~ takes her Meds as prescribed and never has any attacks.

God works in mysterious ways.