MS Friends

[OSU13]

Hi everyone! I've had MS for 32 years. It started when I was 17. I began my journey when there were not any medicines to stop the progression of the disease. 32 years later I finally reached a time of peace. I have reached an acceptance of MS in my family's lives. All of us deal with the challenges of the disease in our own way. I have 2 sons and a husband. We have been married for 27 years. We started dating right after the symptoms of MS began. No one knows about the unknowns of MS better than my husband. I wish there was a community like this to help me through the difficult times when I was just diagnosed. My hope is to help others and find a community of MS friends.

[hopeandgrace]

Even though this forum wasn’t around when you were diagnosed, glad to know you’re here now. This is such a kind bunch of folks. Feel free to ask questions, share jokes, or just complain about symptoms. I am thankful for this space.

[OSU13 in reply to hopeandgrace]

Thank you for responding to my post!

[Sandydemop]

hi OSU13 welcome!

[OSU13 in reply to Sandydemop]

Thank you for responding to my post!

[jimeka]

Welcome and join in any time, blessings Jimeka 😊

[OSU13 in reply to jimeka]

Thank you for responding to my post!

[mrsmike]

Welcome and glad to hear you're joining the group.

[OSU13 in reply to mrsmike]

Thank you for responding to my post!

[Helpmeup]

Hi OSU13. I joined this group last month. My neurologist and I agreed I needed a change in my M.S. therapy, and I had questions about side effects of the drug. I realized there was no one better to ask than other folks who are already taking it, so here I am. Several people responded to my post with lots of good, solid and helpful info. Welcome!

[amh1972 in reply to Helpmeup]

Hello, I want to give you my input on my experience with Ocrevus infusion therapy. I 1990, I had my first symptoms of MS, and I went until 2005 before I was diagnosed. I went through a variety of injection as well as oral medications before learning about Ocrevus infusions. Ocrevus has turned my life around 100%. The only thing I still suffer with is my abnormal gate when I walk and a loss in visual acuity. The only downside I have found with the medication is the possible side effect of hair loss. I have been on the medication for over three years now, and am doing well. Hope you find a medication that works well for you.

[Helpmeup in reply to amh1972]

Hi! Thank you for sharing about your positive experience with Ocrevus. I chose Kesimpta, which basically works the same way as Ocrevus but I take a monthly injection at home instead of the twice yearly infusion you do. I have been on so many DMT's over the years: Avonex, Rebif, Copaxone, Tecfidera, Vumerity, and now Kesimpta. I have high hopes that this drug will really make a difference. Glad to hear the Ocrevus has worked so well for you!

[OSU13 in reply to Helpmeup]

Hi Helpmeup!

I've been on Copaxone, Betaseron, Tysabri, and now I'm on Abagio! What drugs are your doctor recommending? Copaxone and Betaserson were injections, Tysabri was an infusion, and Abagio is a pill every morning. Each came with it's own side effects. Abagio has very few if any. Let me know if you have any specific questions

[Helpmeup in reply to OSU13]

I go way back with M.S. treatments too! I started to have symptoms around 1996-97 but did not get diagnosed until 2001. I started on Avonex for a few years, switched to Rebif, then to Copaxone. Then I was put back on Avonex! In 2013, I started Tecfidera and when insurance wouldn't cover it, I took Vumerity. I did not do well at all on Vumerity and had to stop taking it. Last month I began Kesimpta which works almost the same way as Ocrevus. I am tolerating it very well so far, and hope it will work well for me. Glad to hear the Aubagio is working for you!

[MarkUpnorth]

I'm sorry, what follows is a copy from the other I just responded to. I had M.S. for, where did that post it go?, and I did DMT's after several years, many of them, for many years, till may neurologist of the time told me to consider stopping, having lived with flue like symptoms from them non-stop for years, several types. Then I went into "a coma", (heavy brain fog), making me me useless for years. But I fought back. I found that if I didn't eat anything, I could stay out of "the fog". I started out of not eating till dinner when I slipped back into the fog, by juicing fruits and veggies using a $30 juicer and 2nd's produce rack stuff. It kept me out of the fog. A couple years later, I moved onto power mixer the same, giving me some bulk in what I consumed. I eventually moved onto lean meats, fish, seafood. Where I am today. Here starts the copy:

I fought, and still fight everyday. I went from "comatose" due to M.S.., A cane to push me around and keep from falling down. To healthy eating and now no meds, walking 10K steps a day. Am I cured, hah! No I still live with at least 100 on the list of ? my neuro's have you check off on check in, BUT, life is good with a free bathroom GPS, .... And I have learned to cook! Healthy! Michelin Star, no, but it's my life. Internet look ups on what to make next. My must do, nothing processed. Reference the Wahls doctor with M.S. who did research on food and M.S.... My neurologist plural , the best I could find in the big city area, at any cost, have after years of everything they could think of, all the DMT's, have recognized I have moved on to the living with the aftermath of M.S.., something most people don't. Well, I still have those 101 things, but I'm learning how to live again. And I can push a shopping cart down the isles of all the food and produce markets like a champ, looking for healthy veg's, fish, seafood, meats...on sale, as well as a powered lawn mower...

Most people don't recognize I'm in any way M.S. battle wounded. Look into the healthy eating thing, Whal's M.S.... Then you will enjoy life, like now, the colors of fall. Even though I need to do another 10K steps mower sweeping up leaves. 6 lawn bags full last week. Looks like another 6 this!

[OSU13 in reply to MarkUpnorth]

Hi MarkuUpnorth: Thank you for responding to my post. I'm happy to hear you are doing well now! I'll try some of your eating suggestions. I hope they will offer more energy on the difficult days. Have a great day!

[falalalala]

Welcome!

[OSU13 in reply to falalalala]

Thank you for responding to my post!

[MsBoo]

Welcome OSU13 As I have said before.. I have looked high and low for a group that "fits me". I stopped when I got here..

I too had symptoms when I was 17.. finally diagnosed at 1995. Took 21 years for diagnosis. Now have had MS for 47 years.. so know where your coming from on that area.

Have been on most all the injectables, and some of the infusions.. Now on Ocrevus.. not thrilled with it.. I was much better on Tysabri.

But I found this group.. Informative, funny and so very helpful. They are a bunch of great people. The greatest I have found in my travels..

[OSU13 in reply to MsBoo]

Hi MsBoo:

Thank you for responding to my post! I rarely hear from someone who has had MS longer then me. I'm glad you're doing well. Have a great day!

[NorasMom]

I'm part of the "too long ago for treatment" club. This is a great place for fun! Sure, they can answer your questions (including those that have nothing to do with MS!), but what I like is that the focus is primarily on the fact that we're normal people with real lives, and that there's more to all of us than just MS.

[OSU13 in reply to NorasMom]

Hi NorasMom:

Thank you for responding to my post! When were you diagnosed with MS?

[NorasMom in reply to OSU13]

Not until just over 2 years ago, when I was 55 and in the midst of the longest and 2nd-worst exacerbation I've ever had. I've had consistent symptoms since I was 15, and looking back, I think there were signs a couple years before that.

[OSU13 in reply to NorasMom]

I'm sorry to hear that! Are you on any of the MS medicines? Have you seen a MS specialist? I look forward to hearing from you! Have a great day!

[NorasMom in reply to OSU13]

No specialist, but I found an amazing neurologist who listened to my lengthy tale of woe and said "Well, if it's not something common, then we'll start looking at the uncommon things." He sent me for an immediate battery of tests and did more for me in 3 weeks than all the others had done in the 40+ years prior to that.

He tried me on Ocrevus briefly (I didn't like the side effects) but admitted from the start that it was a long shot. I think I've done okay without drugs. I make frequent use of heating pads and hot water bottles, and I drink a turmeric/ginger tea every day mixed with various wild herbs.

Worked full time for many years, and I'm still able to live alone. I did give up driving voluntarily, but I can still do it for short distances if I have to. I can mow my large yard (automatic riding mower only) and do a bit of gardening.

[OSU13 in reply to NorasMom]

I'm glad you found a good doctor. Keep up the hard work! Ask him about Abagio. I have no side effects. The drug works great!

[mrsmike9]

Hey neighbor! Ohio State! I'm in northern Indiana. I'm sorry you've gone so long without support, but you've found us now! We are a family. We share. I'm stopping that sentence there because we share nearly everything. I say "nearly" but I can't think of things we don't share (except politics). We welcome you and encourage you to chime in!

[OSU13]

Hi Mrsmike9:

I graduated from OSU in 1993. I'm a true "Buckeye Forever" Go Big 10! I was a freshman in college when my MS symptoms began. My doctors at OSU started my realization that I had MS! It seems so long ago now.

[Tazmanian]

wwelcome

[agate]

Welcome, OSU13!

I'm yet another one whose MS started long before the MS drugs and before MRIs but at least I had a normal life until my late 30s. I was diagnosed with MS 32 years ago but by then it was SPMS. The neurologist who diagnosed it thought the first episode was when I was 20 and had severe vertigo that led to a fall where I knocked out 4 front teeth. No way to know for sure.

We're lucky to have the Internet now, where we can find other people in the same boat.⛵

[OSU13 in reply to agate]

Thank you for responding to my post! Most people with MS can look back in their history and see that MS started long before the actual diagnosis.

[Tuliplover]

Welcome! 🧡

[OSU13 in reply to Tuliplover]

Thank you for responding to my post!

[OSU13 in reply to Tuliplover]

Thank you for responding to my post!

[BlanketTime1]

welcome and thanks for sharing your story with us.🤗

[OSU13 in reply to BlanketTime1]

Thank you for responding to my post!

[mm1527mm]

welcome ! This is a great group and truly helped me when I was first diagnosed 2019

[Jesmcd2 CommunityAmbassador]

Hi and Welcome to the Family OSU13 ! I see you met alot of us and yet there are so many more! 🤣😂 You can find info here or if you need to laugh, cry, yell and scream... We are All Here For You!

Here is some info on different DMT options... mymsaa.org/ms-information/t...

🤗💕🌠🎃

[twooldcrows]

welcome...

[kdali]

Welcome!

[amh1972]

Hi, OSU13. I am happy to meet someone with similar medical problems as myself. I was 22 when I had my first symptom of MS. I woke up one morning with blurry vision in my left eye. The doctors told me it was a case of Optic Neuritis and gave my infusions of steroids to bring the swelling of my optic nerve down. I have had ups and downs every since, and it wasn't until 2005 that I was finally diagnosed as having MS. I have tried a variety of oral medications and finally was placed on Ocrevus in 2019. I have been very happy with the outcome until recently. I have started shedding my hair recently, and it appears it may be a side effect of the medication. I have started taking Hair supplement vitamins as well has using a hair tonic daily.

[OSU13]

I’m sorry to hear about your recent concerns. What other medicines have you tried?