FYI For MS Sufferers

[ProfessorGAC]

Check out this link.

http://www.multiplesclerosis.com/admin/templates/News_Features_Template.aspx?articleid=221&zoneid=8

The Professor

[fudge stripe cookays]

1. Good stuff. Thanks Doc!

That describes me to a T. I've been coping pretty well since I started on the Betaseron.

Every once in awhile, my Lhermitte's knocks me out headache-wise, it's hard to walk long distances, and I do still get tired much more easily, but compared to some with this nastiness, I've been remarkably lucky.

I don't know what I'd do without my Betaseron.

fsc

[ProfessorGAC]

2. You & I Both, Cook

The Professor

[SiouxJ]

3. Thanks Professor

I haven't checked in here in awhile so I just saw this.

I fully believe that getting on my meds fast is what has allowed me to not suffer anything more than occasional dizziness and a "hungover" feeling every now and then. I will be eternally grateful to the Neuro who said he wanted to get me on them right away. Sadly he is now deceased.

:hi:

[ProfessorGAC]

4. Hey! Where Ya Been?

I just mentioned you to my wife last night. I told her i haven't seen you post here in a while. (We were talking about people we know that have chronic illnesses and the folks here at DU who suffer from MS came up.)

How are you doing? I'm pretty much the same. Had a couple rough weeks in the early fall, but came back to baseline. My neuro says he doesn't need to see me more than once a year anymore. I figure that's pretty good news.

Other than that, same old. We got a new kitten though. Became fast friends with the big beastie. Now we're back up to 3 kitties and the dog!

The Professor

[SiouxJ]

5. I've just been very busy lately

I took a week off (first real vacation in two years) and went to Vermont and then spent the rest of the month of October getting ready for my big annual Halloween party; between working and entertaining two Border Collies that is ;-) .

Glad to hear you are doing well! I'm fine too. In fact, I've added 15 minutes on a stair-stepper to my 3 mile walks. The dog walks are good but they weren't really getting my cardio up like when I used the treadmill. About the only thing I'm still suffering from is insomnia, which is pretty bad but I'm coping with occasional meds and herbs. Naps help too :-) .

Sounds like you have a nice little zoo there! I just celebrated the two year anniversary of getting my pups on Tuesday. Seems like just yesterday.

I hope you and yours have a nice Thanksgiving. Nice chatting with you again.

[Pathwalker]

6. The link didn't work for me.

I need to know more about MS, especially what is required for a diagnosis, what some of the less known symptoms are, etc.

Thanks for whatever help you can provide.

[Apinionated]

7. Don't know if you got info

I was diagnosed with relapsing-remitting MS in 1998 and have a mother who got her diagnosis 2 months before mine.

The big thing is to find a neuro you like and trust and get there ASAP. The disease modifying drugs are important to get on ASAP. www.nmss.org is a good resource (National MS Society). The MS Society can help you find doctors who have experience in MS. I was surprised to find that one of my MS exercise class members was still going to her GP for her MS, not a neurologist (she didn't like her doc's treatment plan either).

The day I got my MRI and diagnosis was the day the Monica Lewinsky story broke (Jan 21, 1998), so I have an unusual (and sedated) view of both things.

Don't be afraid. The only hint I can give for diagnosis methods is take the MRI over the evoked potentials test. And if you are nervous about being in the MRI tube, don't be embarrassed to ask for sedation. I can't bear even being still for sunbathing, so laying in the tube still for any period of time un-medicated was not an option. So I get doped up and make it through. I've had 7 and go for the 8th in September.

The problem with MS is it presents differently in each person. My mother's MS was missed by the Duke U health system because no one put her separate symptoms together as part of a larger problem. When she had bladder problems, they sent her to the urologist, hand tingling, to a carpal tunnel specialist. She finally put it together herself and got herself to the neuro. The neuro my GP sent me to did the long and imprecise evoked potentials test and missed my MS. My mom (not a doc) insisted I go to her neuro, and he ordered the MRI and showed me the films. Hell, I could see the lesions myself. Needless to say, I am not a fan of doc 1 and am grateful to mom and doc 2 for getting it right.

One thing: most people present with the disease through blurry vision or optic neuritis. My mom and I had none of these. In fact, I did get optic neuritis 6 years after my MS diagnosis and had no idea what was going on. I had a splitting headache and thought it was a sever sinus infection. I thought my GP was over reacting when he sent me to the eye doctor--and then it turned out it was this serious optic never inflammation (neuritis). I completely recovered after a course of IV and oral steroids.

MS just means I need to be careful about the heat and I gave up my dream of getting a hot tub! I occasionally slur my words, get fatigue, and banding and pins and needles in my limbs. I am on Rebif (since November 2003) and was on Avonex from 1998 until I switched to Rebif. I think the ABC drugs make a positive difference. If these terms sound like jargon, the MS Society glossary and web site will help decode them.

One odd thing--I was in the double-blind test for Tysbari, the MS drug pulled from the market, and had gone thought the months of screening and study MRI (I hate them and had just had one from my regular neuro) and the day I was to get my first treatment, the study neuro thought that I was having a mild exacerbation and I flunked out of the study! I was really disappointed, but then I switched to Rebif and was doing so well, I didn't try Tysabri when it came to market. But then I breathed a big sigh of relief when it was pulled from the market that I HAD flunked out!