My MSAA Community
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MSAA annual update, thoughts?!

It's that time again. I'm always blown away with how much stuff is listed and so thankful I wasn't alive with this disease 100 years ago 💀

What did you read that surprised, moved, gave you hope, annoyed or bothered you? I'll start. The ruminea blah blah bacteria (sorry, not looking it up) in the better off MS patients intestines struck me because I had a sample sent off for free and mine was low. I was eating real foods vegan plus fish at the time (OMS) and now I wonder what it is on keto.

Did I miss the Copaxone monthly injection update? Again, dear John's Hopkins, 5,000iu of vitamin D is not a high dose 🙄 I'm surprised Prolon's MS diet study wasn't mentioned, or maybe I missed that too.

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Hello kdali,

Yes, everything sounds confusing, promising, and exciting, all at the same time. I agree with you, I would have hated to be diagnosed with MS 100 years ago! So much sounds promising but MS is a very individual disease. What is good for one person might not work for another. I keep myself informed as best as I can and I always discuss treatments and approaches with my neuro.

I am always hopeful for a cure.

Keep smiling,

Carole

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Lots and Lots of info. Can't absorbed it all at once. I have to read 2 or 3 times.

Good info, confusing, promising etc.

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Kali, it's Fancy1959. The doctors I've seen have indicated that I've had MS for over 20 years now. I was only diagnosed about 5 years ago and I praise God that was the case. If I didn't own 15 years earlier that I had this Progressive disease and there was no way to fight it the future would have looked so very Bleak I'm not sure I could have taken it. Back then they patted you on the back and said they were sorry this happened to you and to prepare yourself for the worse. I couldn't have imagined living a more Bleak future then knowing I had this progressed zazie's with no way to stop its progression.

I know that the information comes out so constantly it becomes very confusing to try to keep up with all the advances. But at the same time we are so excited about these advances and hopeful that as soon as they can figure out what causes MS they can cure it. With each and every DMT approved we take step closer to beating this monster. We are all lucky to have this chat room because it provides us so much information to help us absorb and understand all the changes that are constantly bombarding us when we deal with MS.

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I'm glad I didn't know either. I had a CIS 18 years ago but was never told that's what it was. But, I wish I had known earlier than 3 years ago. I agree!

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Do you have a link to this? I'm not sure I found the right info. Thanks!

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Thanks!

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There is so much information out there it can make your head spin around. I do try to keep up with the latest and greatest even though my DMT is working just fine. I too probably had MS long before I was diagnosed, probably as early as my teens. The only symptoms I ever had was fatigue and neuropathy in my feet and hands off and on. Never really put them together until I was 50 when half of my face went numb which prompted my PCP to send me for an MRI. The next couple of months were like a whirlwind with all the tests before my neuro would confirm MS. Since then on I do a little research now and then when I hear something new. They have come so far since I first heard of MS when Annette Funicello was diagnosed with it. Then they only had steroids to help slow the progression. When I was diagnosed they only had about 5 different DMT plus steroids. Now look at what they have. I was so excited when they came out with the oral meds. I tried Techfidera for 2 years and it didn't work as well as copaxone did for me. So I'm back on copaxone but at least its only 3 times a week now. Some day they will find a cure.

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I'm so glad Copaxone is working well for you! You never know which one is going to do it for you; and then you don't know how long you'll be ok on it. Copaxone monthly injection has been sucessful so far!

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