Just been diagnosed with Multiple Sclerosis, anyone have any experience with it?

[gbear]

Relapsing remitting (RRMS) is the most common type of MS, and it's the one for which there are drug treatments. There are also more in the pipeline. With this type of MS, a flare makes things worse, but things improve if not back to the level before the flare. This new level of disability lasts until another flare.

This cycle typically lasts for a while before a secondary progressive MS rears its head. During this phase, there are no more flares but rather a steady decline.

The steady decline can happen without the RRMS, and its referred to as primary progressive.

Note, these descriptions refer to the pattern of symptom progression, but it says nothing about the speed of disability accumulation. All of the drugs for slowing MS have been FDA approved for the first category mentioned. There are no drugs approved for treating progressive MS. While I've had MS for 7 years with no flares in the past 3 years, I have had increasing symptoms. Still, as I explained to my wife, I will not ask my neurologist if I am now progressive. Note, many men progress to progressive in first 5 years . From memory, it's close to half. I don't ask, because I don't want an answer which might give my insurance a reason to stop paying for treatments. When I say not FDA approved for treating progressive, that doesn't mean ineffective. So I stick with the most powerful drug on the market and hope.

My advice is research what you can to know to which questions you want answers and to which you are better not knowing. Send me a message if you have any questions or want a phone number of somebody who has lived and worked with MS for the past 7 years. Be calm. Most of us aren't in a vegitative state.

[Redskinzfan30]

It sounds more like your dad has primary or secondary progressive which are very hard to treat. Relapsing remitting is the most common and most treatable.

Yeah that actually is right. My bad I had a brain fart.

[No_Pressure]

I have gone through a series of tests recently due to 20+ lesions being found on my brain. The diagnosis is Multiple Sclerosis. Wondering if anyone here knows anyone who has it? Anyone familiar with treatments? I have to decide what kind of treatment I want the rest of my life and I know there are several options. Just trying to see if anyone knows anything about them.

This has always been like my second home so it seems only fitting even though a rival fan that I come here for any advice. I've sought advice on another message board too but I always get good info here as well.

My sister takes daily injections of Copaxone. It greatly reduces her episodes and stops the growth of further lesions. Changing one's diet could also provide a boost as could getting more vitamin D. The most important weapon of all in any physical battle is your brain. Positivity, faith, and resolution are traits which will make the difference between being affected by MS for the rest of your life and telling MS to go **** itself. Good luck, but I'm sure you don't really need it. You and anybody out there can kick this disease's ass. Go get em'

[gbear]

One neurologist I've seen give multiple talks to MS patients swears by vitamin D. I will say adding it to my weekly regimen has helped. in addition to my daily multi vitamin which has 100% daily recommended amount, I take a 5000 unit pill weekly.

I started with copaxone when first diagnosed because it has had the fewest side effects, and its efficacy was comparable to other front line drugs of the time (Rebif and Avonex) without the flu like symptoms. Sadly, it did not work for me. For what its worth the oral pills have thus far been shown to be more effective at slowing down the progression of MS than any of those three. The down side is they have not been on the market as long. So if there is some side effect or increased risk of adverse outcome in the 10th year of taking the drug, it is probably unknown at the moment. If a drug isn't working after the time it takes to achieve a critical amount in your system, get off it and try another. There are quite a few choices now, unlike 20 years ago. Don't let your nervous system keep taking hits it doesn't have to take.

I would advocate for treat the situation as it presents itself now when it comes to picking which meds to use, and deal with future possibilities when they happen. What we can treat in 10 years may be different from what we can treat now. Of course, I say this taking a drug for more than 5 years when there is no published data to quantify the risks for taking the drug more than 4 years, and much of it is set up as cumulative risk rather than actuarial risk. What I mean by this is, they can say the likelihood of getting a brain infection in the first 5 years is x, but they aren't publishing the likelihood of getting a brain infection in the 5th year. Years 2 & 3 have the most infections, a fact I found out in month 35 of taking Tysabri. So for me, I didn't care what the risks were for the first 4 years at that point. I just wanted the risk in the 4th year.

Good luck, and let me know if I can help with anything.

[Huly]

I am keeping you in my thoughts and prayers Tom! Please keep us up to date on your status.

A good friend of mine was diagnosed with this a few years ago but then they found out the diagnosis was wrong and she actually had a Gluten allergy. Since going gluten free she is doing awesome. I am not sure how they misdiagnosed her etc. She went through a bunch of tests etc. She was having issues with muscles and joints. I am not sure if it will help you or if your situation is similar to hers but I thought I would toss it out there.

[KingGibbs]

Tom. I know we've had our differences when it comes to the game of football, but this is the game of life and I seperate the two. I wish you well and I will send my thoughts and prayers.

[Tom [Giants fan]]

Thank you all for the well wishes and advice. I am actually taking vitamin D, 5000 units of D3 per day. My vitamin D was very low. And gbear, I've been diagnosed with MS. I read that almost everyone with MS is diagnosed with the common type because it is hard to tell if it is any other type until symptoms progress. That is what I have been diagnosed with. I'm just wondering how long I've had it considering I have over 20 lesions. I haven't had health insurance until recently so I haven't gone to the doctor for anything in years. I am going for some type of blood work next Wednesday to see if I can take the oral medication based on whatever levels they are testing for.

Thank you all and I will keep you guys updated. And I'm sure we will all be talking a lot next week in The Stadium section.

[HogNose]

Sorry to hear this Tom. Best wishes to you in your fight against it. I don't know anyone with MS, etc but I do take high doses of D3 each day. If there was one nutrient that people should take daily it would be D3...especially in the winter months.

Anyway good luck and stay strong.

[GoSkins561]

Thoughts and prayers Tom, be strong, you've got this.