Mil- Ms??

[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?

Thanks and God bless you all.

 

[Mackey Mouse]

Hugs to you and your DH and most especially you MIL....

I did a bit of research this am as the only brush I have had with MS is a distant cousin who lived a very long productive life....we never knew and then one day she ended up in a wheelchair and then we knew.. but it was a long time before that happened..

Found this googling for you: http://www.destinationcure.com/aboutms.html

 

[aksunshine]

Hugs to you and your DH and most especially you MIL....

I did a bit of research this am as the only brush I have had with MS is a distant cousin who lived a very long productive life....we never knew and then one day she ended up in a wheelchair and then we knew.. but it was a long time before that happened..

Found this googling for you: http://www.destinationcure.com/aboutms.html

Thanks.

See, this is why I love the DIS, people go out of their way to help....

Really, thanks for looking up the link, I checked it out and it really helped me understand.

 

[jann1033]

like many chronic diseases it can go either way...however usually the course it runs in the first 2 yrs you have it shows what it's going to be like. some people have it for yrs and never have symptoms. i have 2 friends, one has had it over 30 yrs, one about 10 and they have very few permanent and very minor effects from it ie you'd never know it to look at them...another friend has had it about 15 yrs, is totally incapacitated, in a nursing home and it's a matter of time. i have CFS but more neruo symptoms than usual so some drs think i also have ms ( sometimes they seem to go together or are so close they can't differentiate between the 2.both cause similar mri results, my first mri was inconclusive, I freaked out 2 times at the latest one ( claustrophobic)and due to other health problems they didn't want to put me out to see if this one would be more conclusive)
according to my present dr who herself has ms, they should never give you a firm dx of ms until you have had 2 separate incidents of flares. it does give some really weird symptoms though sometimes ie like it feels like you have a large tight belt around your waist, if get weird electrical like charges that go through my body, don't always know where parts of my body are...don't know what symptoms your mil has but if they don't know they can and probably will do a spinal tap.

 

[aksunshine]

like many chronic diseases it can go either way...however usually the course it runs in the first 2 yrs you have it shows what it's going to be like. some people have it for yrs and never have symptoms. i have 2 friends, one has had it over 30 yrs, one about 10 and they have very few permanent and very minor effects from it ie you'd never know it to look at them...another friend has had it about 15 yrs, is totally incapacitated, in a nursing home and it's a matter of time. i have CFS but more neruo symptoms than usual so some drs think i also have ms ( sometimes they seem to go together or are so close they can't differentiate between the 2.both cause similar mri results, my first mri was inconclusive, I freaked out 2 times at the latest one ( claustrophobic)and due to other health problems they didn't want to put me out to see if this one would be more conclusive)
according to my present dr who herself has ms, they should never give you a firm dx of ms until you have had 2 separate incidents of flares. it does give some really weird symptoms though sometimes ie like it feels like you have a large tight belt around your waist, if get weird electrical like charges that go through my body, don't always know where parts of my body are...don't know what symptoms your mil has but if they don't know they can and probably will do a spinal tap.

First of all, your siggy is just precious.

We think this is at least her second flare up. Mostly she can't think clearly, she replaces words she means to say with things that are of the wall. And she has had some appendage numbness and at times her face droops. We can only hope it isn't MS or something as bad or worse.

 

[jann1033]

First of all, your siggy is just precious.

We think this is at least her second flare up. Mostly she can't think clearly, she replaces words she means to say with things that are of the wall. And she has had some appendage numbness and at times her face droops. We can only hope it isn't MS or something as bad or worse.

sometimes the wait is the worst...hard to explain but not knowing is terrible, once you know ( at least i feel this way) you know what you are up against.
i think this is a good website( link below) number one cause it seems to deal with reality more than scare tactics. no chronic illness is a barrel of laughs but MS isn't necessarily/usually as bad as usually it's portrayed. having neuro problems can be scary( ie when my legs aren't working right the thought does cross my mind... "what if" ) but if she has little permanent affects ( don't know how long it has been happening) it would seem not to be the really bad one...my friend that has that type has never had a remission from the day she got it, the others have and if it is what i have, I've only had 2 really bad IE incapacitating neuro flares in almost 20 yrs. I have more minor flares more often,a few things all the time...where I have some bits and pieces ie i have double vision , i do that with my words also(...sometimes it's not a word at all just sounds, sometimes it's the wrong word ,sometimes i just don't have any idea what the word is but it's different than the word on the tip of your tongue thing,) numbness, bladder problems..now that is a barrel of laughs..not ( but one thing you almost never have with cfs which makes them wonder MS with me)etc...,not that it isn't upsetting when i am having them but it just is not always to the point of really putting me out of "commission", more just what i like to think of as " annoyances". some stuff like the brain fog are also part of cfs which at best is just under surface all the time at worst, totally takes over, no happy medium there i think my original dr said it best when he said you develop a "new normal" with a chronic illness...after a while you forget what life really felt like pre illness and imo that is a blessing...i don't really remember what i felt like before i got sick so i am not always thinking about how much less i can do now. that would drive me crazy if i did. after the initial shock, you do adapt somewhat.

just as a recommendation.
just as her family, be as supportive as you can, if something sounds weird to you or maybe she can't do something at the last min. try not to be upset with her...again this is me but i think disappointing others is very hard to accept/deal with and with a chronic illness you always seem to be put in that position...having a supportive loving family that accepts you with your limitations can be such a help
i hope you find out soon and she can get some good health care.

http://www.nationalmssociety.org/myths.asp
thanks the siggy is my granddaughter...i have to say sometimes she is what keeps me going

 

[tiggeraholic]

I was diagnosed with MS five years ago. Most people who don't know me would never guess something is wrong. I take daily shots to slow the progression of the disease. There is no cure right now but hopefully soon. My main symptoms are numbness in my hands and feet, tremors with my hands and occasionally slurred speech or gait problems. I take medicine for the tremors.
I go to a MS Clinic in Houston for my doctors appointments. I try to stay out of the heat or stress myself out (these can cause flare ups.....the symptoms can get worse)......hard to do with 2 teenagers.
The way I look at MS is that this is a disease I can live with...there could be worse things to have. Adjust your lifestyle a little and you should be fine. Whatever you do, DO NOT go out and read all the books about MS. They give you the worst things that can happen and that will only scare you. Take one day at a time and you should be fine. Good luck to you and your family and if you have any questions let me know.


Tiggeraholic

 

[barkley]

First of all, your siggy is just precious.

We think this is at least her second flare up. Mostly she can't think clearly, she replaces words she means to say with things that are of the wall. And she has had some appendage numbness and at times her face droops. We can only hope it isn't MS or something as bad or worse.

just want to let you know that these sound exactly like the t.i.a's (also known as mini strokes) i've had. has your mil been evaluated by a neurologist? if not that's something she should pursue. unlike a full blown stroke they generaly don't leave an indicator that can be seen via an mri-but a good neurologist can look at the symptoms and other health/genetic factors and make a diagnosis.

with tia's the symptoms generaly pass no longer than 24 hours later (but you can feel like you've been run over by a truck and be left exhausted for several days to a week or more).

 

[aksunshine]

Well, as of now, MIL needs to see yet another neurlogist (this will be #4). They still don't know exactly what is wrong with her, though they are treating it as MS. Yesterday she went to her massage class and could not feel ANYTHING in her feet and legs, though the instructor said as hard as he was pushing, she should have been screaming in pain. She also fell over again, this has been happening just over a week, her shoulder on one side will begin to pull down, throwing balance off. AND, she says she gets pains really bad on her back, and yesterday it felt like someone was trying to pull off her skin. They have, quite literally, ran EVERY test under the sun, even things the doctors "knew" she didn't have, just to be safe. We don't know what else to do.

It has gotten to where I spend 1-3 nights there a week, taking care of the kids and house, ect... It puts so much stress on everyone, but we're doing what we can. It's looking like we may have to sell our house and move in to help with bills, probably by the end of the year.

Thanks everyone, for your thoughts.

 

[Belle1997]

I too am struggling in the MS limbo land though sysmtoms I have are being treat like I have MS. I belong to a good MS support forum. You can PM me for the web address. I get a lot of my questions answered there. Info on meds, and support. There is also a care giver section. MS affects everyone differently. Some have MS and have few symptons others it is farly bad.

Hope that helps.

 

[geetey]

Another DISer with MS here. Although I was diagnosed in 2004, it appears I got my first lesion in 2000. Is it possible for your MIL to get to an MS specialist? I ask because I saw a neurologist (who diagnosed me - I have 2 significant lesions on my spinal cord)who claimed I would be in a wheelchair in a week if I didn't stay home and sit on my behind. He made some extreme recommendations regarding treatment. When he realized I was not going to just sit around and do nothing (we were in the process of relocating from 1 state to another and I had wallpaper in the next house to tear down!), he released me so the new doctors could have their own plan. I found a wonderful MS center (there are 2 in St Louis), a doctor who specializes in MS and am doing well. Heck, I was even crazy enough to do a half marathon! (Okay - so I can never do that again but it was worth a try.)

MS varies so much from person to person so it is hard to say what could happen. I can wake up and barely walk. Two days later, I can be coaching basketball practice. Other days I am so tired, I can hardly get up.

I highly recommend the National MS Society link that Jann posted. You can link to a local chapter from there where you should be able to get some information on doctors. I hope things turn around for her soon. As much as I hate them, a good dose of steroids typically brings me right out of a flare-up. I also agree with Tiggeraholic - there are lots of CRAZY books out there! Look for facts.

Belle - would you mind posting a link to your MS forum?