Multiple Sclerosis

[aksunshine]

My MIL has had her 3rd MRI, and the doctor is pretty sure she has MS (either that or mini strokes, but leaning more toward MS). Of course, DH is highly concerned. We live nearly an hour away and he is her only child by birth. She adopted 4 more children, but the oldest is 14 (today actually!), so if something really bad happens, we will likely be raising 4 more children.

My question is, how bad can MS get and what options are out there? And what are your experiences with this disease?
We are supposed to be taking her and kids to WDW (their first time!) in Sept.

Thanks and God bless you all.

 

[Jeafl]

My best friend's husband was diagnosed with MS about 13 years ago, he is 45 now. He is actually doing very, very well. He leads a mostly normal life. He is on daily medication, and he has to avoid anything that will make him dizzy, like most amusement park rides, but it is amazing how under control it is.

His doctors told him that it is quite possible that he may end up in a wheel chair someday, but for now the new drugs they have out have slowed the progression considerably. Most people don't even know he has it. He is a Fire Captain/Paramedic and he is still able to do his job. All in all, I think if it is caught early enough, most people live a fairly normal life for many, many years. Good luck to your MIL.

 

[Dizznee Freak]

Ak,I just wanted to write and let you know that my wife was diagnosed with MS 5 years ago.The outlook is a whole lot better today than it was just 15 years ago. The future depends on what type of MS she has. There are a lot of variances of the disease each with its distinct pattern. My wife has what they call primary-progressive MS. It means she doen't have the severe debilitating attacks that can be associated with it ,however she is on a slow downward spiral in regards to severity of symptoms. We(the doctor and I) believe she will make it to her 50's before she will have to use a wheel chair and only for trips that require alot of walking.
That being said, we have been to WDW twice since she was diagnosed and the only difference was that she rode around in a wheelchair to conserve energy.nother problem for peole with MS is the fact tha they do not do well in the heat at all. If my wife gets over heated she is drained to the point of exhaustion for almost a week.
If you have anyother questions let me know.

 

[aksunshine]

Ak,I just wanted to write and let you know that my wife was diagnosed with MS 5 years ago.The outlook is a whole lot better today than it was just 15 years ago. The future depends on what type of MS she has. There are a lot of variances of the disease each with its distinct pattern. My wife has what they call primary-progressive MS. It means she doen't have the severe debilitating attacks that can be associated with it ,however she is on a slow downward spiral in regards to severity of symptoms. We(the doctor and I) believe she will make it to her 50's before she will have to use a wheel chair and only for trips that require alot of walking.
That being said, we have been to WDW twice since she was diagnosed and the only difference was that she rode around in a wheelchair to conserve energy.nother problem for peole with MS is the fact tha they do not do well in the heat at all. If my wife gets over heated she is drained to the point of exhaustion for almost a week.
If you have anyother questions let me know.

Thanks, and my thoughts are with you and your wife.

The Doctor thinks she's had this a couple of years. She had some problems last early year, but they never found anything, instead they told her to come back in 6 mo for another scan. Well, being self employed (she owns a beauty shop) and having crappy insurance, she didn't go back, until recently.

We are planning to go to WDW the end of Sept, hopefully it won't be too hot. Honestly, she could care less about going, we had to do major convincing (the 40% off helped too). But I'd hate for her to not go and see how truly wonderful it is, because we'll probably never convince her again!

As far as the type, I think it's the main one, with remissions and attacks. I can't remember what it is called, but nothing is definite yet.

 

[aksunshine]

My best friend's husband was diagnosed with MS about 13 years ago, he is 45 now. He is actually doing very, very well. He leads a mostly normal life. He is on daily medication, and he has to avoid anything that will make him dizzy, like most amusement park rides, but it is amazing how under control it is.

His doctors told him that it is quite possible that he may end up in a wheel chair someday, but for now the new drugs they have out have slowed the progression considerably. Most people don't even know he has it. He is a Fire Captain/Paramedic and he is still able to do his job. All in all, I think if it is caught early enough, most people live a fairly normal life for many, many years. Good luck to your MIL.

Thanks, hopefully life stays fairly normal for her. She isn't married, so she is the sole provider for her and her children.

 

[Cheshire Figment]

May I suggest you go over to the "disABILITIES!" Forum. You can get and/or find lots of information there. It is not just Disney related.

 

[ahutton]

You might also contact the MS Society for your area. They have a ton of information available, and will be a great resource on what assistance may be needed and available. I volunteered for them several years ago for their big bike ride fundraiser.

 

[disneynutt1225]

My mother was diagnosed with MS in 1989. She has relapsing-remitting MS and was experiencing symptoms long before she was finally diagnosed. It started with numbness, loss of balance, etc. They initially thought it was just vertigo. After a few years, she had optic neuritis, and shortly after that they diagnosed her.

She's been on medication since then, many different types. Avonex, Betaseron, she even did chemotherapy once as an experimental treatment. Overall, she's done well, however she does have mobility problems. She uses a cane or walker around the house most of the time, and she uses a wheelchair when she goes out.

She worked continually after her diagnosis, but had to stop working a little more than 10 years ago because she had a bad attack when we moved in 1997 and didn't recover 100%. That said, she doesn't look or act her age (she's 51) and she's been on a new treatment since September that looks like it's really doing the trick. It's called Tysabri, and it was just re-approved by the FDA. Since being on it, she's been getting back a lot of the small motor skills in her hands - the major one was being able to put in her earrings in the morning. And it's obviously helping more than we can physically see, because the day after Thanksgiving, my father was taken to the hospital and he wound up spending 17 days in ICU and 19 days in a regular room. The stress from that alone would have sent her spiraling into an attack - but luckily that didn't happen.

There are a lot of resources and options for people with MS.

Keep your chin up, and feel free to PM me if you want to talk.

 

[aksunshine]

My mother was diagnosed with MS in 1989. She has relapsing-remitting MS and was experiencing symptoms long before she was finally diagnosed. It started with numbness, loss of balance, etc. They initially thought it was just vertigo. After a few years, she had optic neuritis, and shortly after that they diagnosed her.

She's been on medication since then, many different types. Avonex, Betaseron, she even did chemotherapy once as an experimental treatment. Overall, she's done well, however she does have mobility problems. She uses a cane or walker around the house most of the time, and she uses a wheelchair when she goes out.

She worked continually after her diagnosis, but had to stop working a little more than 10 years ago because she had a bad attack when we moved in 1997 and didn't recover 100%. That said, she doesn't look or act her age (she's 51) and she's been on a new treatment since September that looks like it's really doing the trick. It's called Tysabri, and it was just re-approved by the FDA. Since being on it, she's been getting back a lot of the small motor skills in her hands - the major one was being able to put in her earrings in the morning. And it's obviously helping more than we can physically see, because the day after Thanksgiving, my father was taken to the hospital and he wound up spending 17 days in ICU and 19 days in a regular room. The stress from that alone would have sent her spiraling into an attack - but luckily that didn't happen.

There are a lot of resources and options for people with MS.

Keep your chin up, and feel free to PM me if you want to talk.

Wow! Thanks so much Chris. MIL has been experiencing vertigo just in the last two days. She has a spinal tap this morning, so we'll know absolutely soon.