Do You Know What is Worse Than Having MS?

[KatieAgain]

Thank you so much for the hug offer.

So, I saw my doctor and he immediately ordered steroid treatment at my local hospital. Three days in a row I had to sit and wait for the drips(IVs Wed, Thurs, Fri). Then that Saturday I had to endure the two MRIs only to find out that I have no new lesions. I HATE, HATE, HATE this disease. What is a flair? I thought that only happened when you had new lesions. So, all I got out of this steroid thing(my first time EVER), was minor improvement of my bladder control, a couple restless nights(even with sleeping aids) and a bad case of acne. I still have severe fatigue and cannot do anything worth a crap around the house.
If I ever get so bad that I need someone to help me go to the bathroom and bathe, I will hire someone to take me out. I am not kidding.

Darlin' you don't need new lesions to be in a flare. Give the IVSM some time...I sure hope it gets better.

Eating....I hope you are getting nutrition in you. I dropped so much weight that last flare that they sent me to a Dietitian. Boost Nutritional Supplements and Frozen Meals that I can nuke...some are actually not that bad. And the Vanilla Boost was good once it was nice and cold.

As for me...they kept me on the TY. I am having a few break through symptoms, but it has not gone into a full blown flare.

Yes...no matter how you cut it, MS blows!!!! And I too will not allow my dignity to be compromised...but for right now let's just take it one day at a time...sound good?

[Thinkimjob]

'Fraid my dignity is perilously close to compromise. Can still move fast enough to cover up disasters, but I fear not for long.

One day at a time, sweet Jesus... (And the God I believe in has bigger things than me on His mind, or He should have -the Ukraine and Russia for starters.)

Never mind. Lemstrada in June. Kill or cure. (Neither really.)

[agate]

Please don't listen to any predictions about how long you might live. When I was diagnosed and went immediately to the nearest library branch to read the encyclopedia entry. It said that death usually follows about 10 years after onset.

Even back then, that was a very pessimistic and misleading statement, as I found out by reading more information in other sources.

I have personally known several people with MS who have died, and please bear in mind that their MS was BEFORE the MS drugs were available. People on the MS drugs have been shown to have a longer life expectancy.

man, died at 79 in 1968
man, died at 61 in 2001
man, died at 59 in 1999
woman, died at 76 in 2005
woman, died at 65 in 1988

All of these people were severely disabled and so were in the minority because most people with MS do not become as disabled as they were.

The oldest known person with MS reached 97, by the way. Studies show that people with MS have a live expectancy only 5-7 years shorter than an average person's.

I was diagnosed with MS at 39, and I'm now nearly 74. I've lived longer than my sister, who died of esophageal cancer. I've lived far longer than my daughter, who died at 27 of a ruptured brain aneurysm.

You can decide that you're going to last a while if you can possibly arrange it. I hope you'll have a long and happy life ahead of you.

[Tawanda]

The oldest known person with MS reached 97, by the way.

Eeeek! No offense, but I don't find this comforting at all. Unless a cure is found, death is not my fear. Living and suffering for years on end is what scares me. I am already pretty maxed out.

[Tawanda]

Yes...no matter how you cut it, MS blows!!!!

Yup, it does! I am no longer interested in what is or isn't a flare, lesion locations, MRIs, why I got this, etc. I just want a cure!

[Cat Mom]

Yup, it does! I am no longer interested in what is or isn't a flare, lesion locations, MRIs, why I got this, etc. I just want a cure!

Couldn't have said it any better! You're exactly spot on!

Katie, I noticed this isn't a brand new post. How have you been feeling lately? I know not 100% but hopefully you've had a wee bit of improvement since posting this.

Jen

[agate]

Eeeek! No offense, but I don't find this comforting at all. Unless a cure is found, death is not my fear. Living and suffering for years on end is what scares me. I am already pretty maxed out.

No offense taken. If you have read what I said carefully, I think you'll find this:

All of these people were severely disabled and so were in the minority because most people with MS do not become as disabled as they were.

There is lots and lots of evidence that the vast majority of people with MS do not "suffer for years on end." They may be somewhat disabled but they live productive lives.