This Is MS Multiple Sclerosis Knowledge & Support Community

Sometimes you don't know how good you really feel, until you feel bad.

Cellcept is very slow to work. Neuro told Gary it would take about 6-9 months to really be doing its full potential. It took about 2 months to see any results. He also was taking a solumedrol shot twice monthly with this to kick it all into gear. He stopped the shot after 3 months. He reached the po...

My husband Gary has Devic's, but dx'd with MS for many years. Same stuff different name basically. We asked for Cellcept. What you read in side effects are based on a person with a normal, healthy immune system. Just remember that when you read any type of drug used to "lower" an overactiv...

Is there anyone whom Tysabri is not working for, even getting worse, that has an "unusual" type of MS. One that has not responded to much of anything? Look into Devic's Disease; NMO. Search it on the internet and see if you meet its criteria. MANY people dxed with MS for years and years ha...

I just have no tolerance for something(MS) or somebody telling me I can't do it. Amen Pete! Gary has been told so many times that he would never walk again. Sorry to all the DRs, but he does. With a cane, but he does walk. He also runs a rototiller in the hot summer. Against my wishes, he does lots...

Pete, It is really odd the changes you mention. We have a friend that just has #1 infusuion 2 weeks ago. Things that were going on before Ty: MASSIVE amounts of urine produced. Bladder would fill up and then with little warning, release, anywhere. He was beginning to get up at 3 and 4am each day. No...

actually we eat sugar. I know that may be bad in some eyes, but you're damned if you do and damned if you don't. Our money is LIMITED so buying too much special stuff is out of the question. Also, Gary is a die hard junk food addict that is picky as all get out. I have just gotten him in the last fe...

thanks Dave It is a subject that many do not want to talk about. But it is a problem that all who have had bad bouts with MS/ Devic's or anything nerve wise has dealt with this. Gary started the flaxseed back the other night. We are going to watch this and see how it goes. May even start back on the...

AMEN Melody, I don't have the disease directly, but yes I have Gary's disease. I gave up my dreams to take care of him. I give up every day and I don't have anything wrong with me, directly. I hurt when he hurts, because I can't make it better. It hurts like hell to watch the one you love deterioate...

DAve, Gary has tried the flax seed capsules before, but we didn't watch for this type of "help". I'll get him back on them and watch. He took the Fiber Choice tablets. Before you said anything, we did notice that it allowed his stool to bulk up. With bad intestins, that is not good. It cau...

I remember the bee sting cure. Gary is allergic to bees and I got disgusted telling that to well meaning people OVER AND OVER AGAIN. Also, there was this person that rode horse back and was cured. Funny, Gary rode horse back at his job. But then again, Gary's is not MS, it's Devic's. Maybe that was ...

As some know, Gary has Devic's not MS. It is MSs evil twin sister. BUT the difference comes in how each are affected. In MS, lesions and axonal damage are the disability. In Devic's, spinal stenosis and axonal damage are the culprits. Gary's spine has much shrinkage from C2 - C7. That is what Devics...

I don't read up on much, but here is my stupid guess as far as the yeast is concerned. With MS, Devics, and other neuro stuff, the whole digestion system slows down leaving "stuff" in the bowels that the body is not built to handle for days at a time. With Gary, he eats fiber, takes stool ...

Isnt it only for the initial treatment? That is, the botox injection is applied using a cath. Yes, it is only for the actual injection, from what I have read. When you self cath all the time, you get MANY more UTIs than usual. Believe me that is true. From what I have read, it solved or nearly solv...

He is on 4AP. Been on it for some time. This bladder issue wasn't found out until about 2 years ago, but we realize it had been going on for years before. Heads up for anybody with voiding problems. GO TO YOUR UROLOGIST!! When we discovered the problem, never went to a DR b4, Gary was RETAINING afte...