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

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.

Tom, I am so sorry to hear that you are going through this. I wish I had information for you but I have little experience to offer you. May I please pray and pray hard for you through this? Hang in there man!

My mother has been battling MS since 1994 and she has been winning the fight. Though she receives a treatment on Sunday evenings that leaves here mostly bed ridden on Mondays, she's an unstoppable force six days a week.

I pray that you, too, will fight it successfully.

Sorry to hear that Tom & good luck...

Might want to consider the below from www.mercola.com

I have my Mom trying out this combination for her RA.

Supplements and Other Helpful Strategies

Low-dose Naltrexone and alpha lipoic acid – One of the newer ones is low dose Naltrexone (LDN), along with alpha lipoic acid. Naltrexone (generic name) is a pharmacologically active opioid antagonist, conventionally used to treat drug- and alcohol addiction – normally at doses of 50mg to 300mg. As such, it’s been an FDA approved drug for over two decades. However, researchers have found that at very low dosages (3 to 4.5 mg), naltrexone has immunomodulating properties that may be able to successfully treat cancer malignancies and a wide range of autoimmune diseases like rheumatoid arthritis, multiple sclerosis (MS), Parkinson’s, fibromyalgia, and Crohn’s disease, just to name a few. As explained on the informative website www.lowdosenaltrexone.org, when you take LDN at bedtime -- which blocks

your opioid receptors for a few hours in the middle of the night -- it is believed to up-regulate vital elements of your immune system by increasing your body’s production of metenkephalin and endorphins (your natural opioids), hence improving immune function.

Im sorry to hear that Tom, stay positive. My friends mother has been battling it for years and one of my cousins has it, just keep up the faith man. I dont know if this treatment can be used on newly diagnosed cases and it hasnt been FDA approved yet, the pharma company was on track to file to the FDA for approval in 2nd Qtr 2012, but the drug is called Campath (alemtuzamab) and its a breakthrough in MS treatments and its only one infusion per year.

Again, since its not FDA approved yet and even if your physician confirms that it might be the best treatment for it, they probably won't recommend until it is as its considered off-label treatment and your insurance company will not pay for it and its very expensive. But its something to ask your MD about for possible future treatments and if they would recommend it, etc. Because there are some really good treatments out there, they probably would try them first. Just keep your head up bro, you can win the fight!

Tom, one of my best friends sister was diagnosed with MS 7 years ago. Initially she went through a lot, but today she's living a good life. She has a full time job, recently got married and just had a kid. She basically lives her life like most healthy people because of the medical help she receives.

I hope things go just as well for you in the future.

5 years in now myself, pm sent.

As I understand it, there are a LOT of very promising new treatments for MS coming in these days. The entire treatment landscape is vastly different than it was just a decade ago, in a good way.

There are also a lot of quacks out there preying on MS patients, telling desperate people that they don't really have MS at all or that they have a treatment that "the medical establishment doesn't want you to know about." Beware of them.

sorry to hear that news, tom.

Very sorry to hear this news Tom. God bless and stay strong

Sorry to hear that. No personal or practical advice I can give but I do want to offer my best wishes. And just out of personal interest, I would be curious to hear from anyone who has received BVT for their MS and what their experience was. I've heard mixed things about it, everything from it reversing effects of MS (refer to The Bee Lady) to it not showing any effects in a study reported in the Journal Neurology.

damn, tom. sorry to hear about this. i always like reading your posts here. youre a good dude and i'm sure you'll be ok.

know that youre in my prayers.

Sorry to hear this Tom

I have no advice, but to say Good luck, amigo.

~John

Sorry to hear it, but as has been mentioned the advances in treatment continue.

My sister has had it for years ,as do a number of friends,but I wouldn't hazard a guess as to the best treatment.

My thoughts and prayers to you and yours

I'm on board with everyone else here Tom---stay strong, amigo and keep optimistic. Many newer treatment models are enjoying success. Get a number of suggestions from well-established professional sources, share them with your main providers for feedback, and be wary of other sources. Keep us informed, amigo.

It would probably be helpful for you to sign up for the newsletter from the MS Society (MSSociety.org)

My family has quite a bit of bad experience with MS, but like a lot of other posters have said, there seem to have been some breakthroughs in treatment recently.

Maybe I'll catch some of you folks at one of the DC area MS Walks...

Best of luck to you, Tom.

No advice. Just my best wishes. And remember, you *are* part of the family here.

Tom--my best wishes to you. I know you'll be strong and fight through this. You have our unwavering support.

www.patientslikeme.com is awesome for finding information on perspective treatments.

Of the front line drugs, the oral pills are more effective than the old shots at preventing relapses which is the measure most use for delaying symptoms (not a huge fan of the measure, but it's easily measurable). Tysabri is the most effective, but due to costs and small danger of brain infection, it is not a front line med. I have had 68 infusions, and it has restored me to back running half a marathon in December (if all goes well).

I've had MS for 7 years now. My blog listed in my sig is a link to my story of MS and fostering medically fragile kids. It has a lot of my thoughts on medications and measuring progression.

Quick question, have you been diagnosed with MS or "Probable MS." If probable look at getting long term care insurance before you are diagnosed with "MS" because the diagnosis will make you impossible to insure for it. Males tend to have faster symptom progression the first 5 years, so if after a few years you aren't headed for the health toilet, you can decide whether or not to drop it. Note, I have heard both sides as to whether the "probable" will let you get the insurance. I was given the advice too late to matter.

Good luck. Sorry I would write more, but I am late to pick up kids at Taekwondo. Let me know if there is anything else with which I can help.

If probable look at getting long term care insurance before you are diagnosed with "MS" because the diagnosis will make you impossible to insure for it.

Great advice...

Tom, hang in there and stay strong. I'm sure you'll fight through this. Keep us updated and know many of us are thinking about you and praying for you.

Tom my thoughts and prayers are with you. You have always been a class act on this board and as a Redskins fan I have always loved reading your posts here on the board. Stay strong and take care.

That sucks, Tom, and my mom and my aunt both have that. Both handled it very differently, with my mom really watches what she eats and makes it a mission to constantly be doing something, like walking or swimming. One thing she does battle with is the fact that making herself healthy can act as sort of a catch-22: the stronger your immune system is, the more damage it can do to your nervous system (so talk to your doctor about that). A huge thing is watching how you deal with stress, because that was usually the trigger for any of my mom's exacerbations (especially the one's that put her in the hospital). There's no cure for MS, but you can stay at a low level for a long time if you stay on top of it.

Tom, I'm so sorry to hear. I do not have any experience with MS, but I wish you the best in your fight against this disease. I was diagnosed with Sarcoidosis about 4 years ago, and while it might not be as devastating to go through as MS, I was able to pull through and send it into remission. I'll pray for you Tom!

Tom, can't offer any advice but only best wishes.