Anyone with MS experience out here?

[SouthernCross]

Our worlds have been rocked this year. After 20 years of marriage, and about 10 with odd medical maladies, my wife has spent the past 10 months as an on-again/off-again paraplegic, losing feeling, vision, and ability to stand. After draining my bank account on MRI's, CAT scans, evoked potential tests, etc., they say she has MS. Trying now to determine if it's in her spinal cord or brain.

I'm truly beyond myself. Anyone have MS or even more-so, MS support experience? I'm now the rock for our family with kids. And the chauffeur. Many days the teacher and cook. I am self-employed, which means many days no work either, if she's having a bad day.

Anyone?

 

[DarkBrood]

I don't have any first-hand experience i my family, but a close friend/co-worker of my SWMBO has been fighting with MS for most of her life. It was really rough at first, from what I understand - there are a lot of different medications and treatments and most have potential for unpleasant or unexpected side effects (AFAIK, each case of MS is different). After some time (I'm not sure how long), they finally found a medication that kept it in check quite effectively. She's had a really rough time of it, losing a baby to SIDS that was over a year old, which caused severe depression (understandable), then a heavy drinking problem (that complicated her MS). Once she managed to lay off the bottle (the big square ones, not our little brown ones), her MS got back under control and stayed that way. She had a lapse about a year ago and needed to take a month or two off from work (she's a violin teacher, so the hand shakes were too much to demonstrate with), but then it recorrected again. She's very insecure about it (so I don't have a lot of details, unfortunately), but until she tells you, you'd never know that she had a problem. She's cute, sweet, and cheerful. They've had another baby (whois wonderful and the picture of perfect health), are taking everything a day at a time, and are quite happy now.

That's a lot of blah-blah to say that - there's hope for a normal life still and that there ARE effective treatments.

 

[rhamilton]

I help administer medical associations and I'd start with Florida Medical Association

Use their directory search or even call them to find a specialist in your area. Even if you've gotten a proper diagnosis already -- you'll need a specialist to administer the proper treatments.

Best of luck to you. I've helped care for stroke-victims and it takes a strong person to care for a disability and take care of a family.

 

[tv187u]

I was all gung-ho to help you with your microsoft Excel (or other program) problem. Allas I am not much help in this other than my sincere condolences for the rough road ahead.

My aunt had ms, so I saw a little. I was young and avoided seeing her though. I hope you find a means of working through all of this. Good luck.

 

[Homercidal]

My sister was recently diagnosed with MS. They found it pretty quick with a CAT scan and it looks like it's in her brain and possibly her spinal cord. She's on PT after a series of steroid IVs and still getting more information.

She lives with mom and mom just recently had surgery on her shoulder and then had to go back in for blood clots. So mom is not able to do much to help, which leaves a lot of the work for my sister to do as best as she's able. Worst is my sisters kids are all teenagers and after the initial crying and worrying they've all gone back to their usual not doing anything around the house and hanging with friends. Makes me want to turn them all over my knee.

Hang in there. It takes time to get back on track and find the right therapy and meds to control it and start feeling as normal as possible. I know several people who live with on a daily basis and most of them you couldn't tell they had it without them telling you.

 

[Greyhound]

My wife was diagnosed with MS 5 years ago after losing her vision in one eye. Although she has a progressive form of the disease and can no longer drive a car, she is otherwise able to care for herself.

My best advice would be to contact the National MS Society. They offer a lot of support to the newly diagnosed and even sponsor dinners and other functions to help you and your wife develop a support network. I'm sure they have events going on in your area.

 

[BrewKnurd]

Man... I'm really sorry to hear that. I don't have anything to add, other than to say that I just rode in the Louisiana MS 150 this past week, so hopefully the money I raised for that will help!

 

[GnarlyChick]

My dad has had MS for about 10 years now. Unfortunately he has a progressive version that only 5% have. You have to be very patient because it is a frustrating disease. They are coming out with new MS drugs more frequently now and they have been helping a lot. Don't be afraid to ask for help when you need it! The MS Society is an amazing association and will help you and your family get through the rough times.
Hang in there

 

[passedpawn]

Zero to add here, just want to say hang in there, she's lucky to have you, I'm sure you'll do your best.

 

[SouthernCross]

Thanks all! It's been a scary transition. Around Christmas this past year she started falling a lot. Awoke just after New Years and fell out of bed. Her legs just stopped working.
She's now lost feeling below her chest to a large degree, her hands are often numb, and her vision has gotten real bad. And she's 39.
The loss of driving ability and fine motor is what makes her the angriest. She's in and out of a wheelchair and/or walker.
We're still in the stage of trying to figure a treatment plan. Recently had steroid infusion, which was great during, but terrible after. Who knows.

Anyway, thanks again. Always good to know others are out there...