Hi, I am new to the group. I am newly diagnosed with MS at 55. I will be receiving Ocrevus next month. Tried a steroid infusion for a week and didn't help with symptoms and made me feel terrible so won't be doing that again. I have foot drop and weakness on the right side. I also have Lhermitte's sign on my left side (if I drop my head then I get an electric shock that feels like it runs from my brain down my left leg). So far I am walking without any assistance unless I know that I will be walking for more than a mile, I use walking poles. I have some balance issues from time to time. I think that I have progressive MS because I have had these symptoms for the past 2 years without any remittance. Does anyone out there have any similar experience? I feel like an outlier due to my age and my symptoms seem mild so far. The scary part for me is not knowing about the future. I am exercising 4 days a week to try to keep my strength up and doing yoga for my flexibility. I have lost 10 lbs intentionally since my diagnosis and stopped drinking alcohol except for a once-a-week date night with my husband (a couple of glasses of wine). I eat a healthy pescatarian diet and am a non-smoker who grew up in a non-smoker household. No family history of MS. I am been really struggling with "why me".
Please reach out, I would love to hear from anyone with a similar situation.
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RTR1
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Lhermitte's was the worst thing for me, more than my struggles with walking.
I was glad to have a reason for the problems I was having.I wasn't thrilled to have MS but a diagnosis of Type 1 diabetes in my 20's kind of helped me deal with bad news/acceptance.
It takes time but one can be happy in spite of MS' "gifts"
It's good that you are exercising.I was told," Use it or lose it" by a friend's mom who had MS.
If it's any comfort, I've had 2 relapses that lasted close to 2 years. That was before my diagnosis. Keep a diary of your issues. It's possible that you do have Primary Progressive, but I'll keep my fingers crossed that things improve for you over time.
I had my first steroid treatment a year ago, and it was one of the worst things I've ever experienced. I'd also do it again in a heartbeat, because it stopped the relapse in its tracks. It still took me a few months to recover, though. My understanding of the steroids is that they only work if you catch the relapse in the first week or two. Is it possible that yours was too far along when they treated it?
This is a great forum for questions, comments, and feedback, and there are a lot of us in your age range.
Hi RTR1 Welcome to the family, that no one wants to be part of! 🤗 First thing... Breath... and do it againg! No one in my family has MS either, so why me? Is good question, and the only answer l have come up with, is... l have no clue🤣😂🤣 MS doest care, it just does what it does🙂
Take your time adjusting, its alot to take in, we get it.
Welcome! The first year comes with a lot of struggles, and you are not alone.
My understanding of steroids is that they work half of the time to speed recovery, and are best started really early. Ocrevus comes with a small dose before the infusion.
There are some people who have their disease fizzle out as the age. I'm hoping for this 🙏 Maybe you won't have long to go down this road! My relapses stopped having complete recovery in my late 30's, and my disease is mild. I think of all the "right" things a person with MS can do, physical activity is the most beneficial.
Lhermitte's does visit me, it's super. It's also my relapse red flag.
I hope your infusion goes well and you start to recover in a few weeks!
I get it I was also diagnosed at 55, I think I was experiencing symptoms years earlier but I ignored chalked it up to pending menopause. I’m still pissed off. Prior to diagnosis I wasn’t on any meds, working 12-14 hour days no problem, only saw pcp for yearly physical. Now my world has changed, meds Ocrevus, modafinil lets me get in 8 hour day, anti depressant, that freaking dye used for yearly MRIs. See 4 drs now. MS sucks best advice educate yourself. Learn the triggers that aggravate your MS. Heat knocks me out, fatigue sucks, Do a chore or task early in the day, take a short nap. MS Society website is great resource, this group has been a blessing to me, I’ve learned so much from this group and have been comforted when times were bad. Don’t let MS own you, be strong, be healthy god bless
But when you really think about it, why not you? What makes you special? Just be grateful that you don't have something worse, like a malignant brain tumor, ALS, a massive stroke, early onset Alzheimer's disease, Parkinson's disease, etc. There are so many diseases that are so much worse than MS.
I was diagnosed in my late 40s but I believe I had MS at least 5 years before that. The first 18 months after my diagnosis were the absolute worst. (So many relapses!) Your MS symptoms sound very similar to mine. Ocrevus should be a game changer that should quiet your MS. Best of Luck!!
Hi RTR1, Welcome to the group. Sorry you were diagnosed with MS. It's hard to deal with and can be an everyday struggle. I have the same symptoms as you but at least you are still walking. I was diagnosed at the age of 46. I was walking with a cane first and now at the age of 50 I have to use a mobile scooter to get around. All happening within three years so be thankful it could be worse. Hang in there. 👍 I have PPMS
Hi, RTR1. We are glad to meet you. I was diagnosed a month after my 60th birthday. That was 2 years ago. It's a shock & took some time to mourn the old me, then move on. This is life changing. Give yourself time to adjust. I went to YouTube & found Dr. Aaron Boster. God bless him. He is a M. S. neurologist in Columbus, OH. He posts plenty of videos without big medical terms. I learned more from him than I will ever, ever learn from my less-than-adequate rural neurologist. Last time I saw her, my visit lasted about 10 minutes.
I thought I needed to read, read, read as much as I could find on research, etc. But Jimeka, (sort of our queen here) taught me to stop digging so much & find peace. Turns out - she is right. I use the app Headspace & meditate daily now. Also, fall back on your faith. God's got this. Reach out to Him.
The Drs tell me my first instance of MS was in 1974. After a couple of months, it went away and then VERY slowly progressed over 30 years, when a neuro told me he was 99% sure I had MS.
Everyone is different and I hope your problems may pass away for a period like mine did, but in any case, welcome to the site. There is years of experience here from people who live with MS every day and share their experience freely.
It is a shock to your system! I was diagnosed in the early 80's, and there were NO meds at all for MS. Betaseron came along in the mid 90's, by lottery draw, and no insurance coverage. So, if you have to have it, NOW is a much better time to get MS, as there are many choices of treatments, and many specialists in MS. I wanted to know as much about this disease as I could, so I read everything I could find. I worked at a college, and then later at a university, for 36 years so I had access to a lot of information. I have not had Ocrevus, but I hear wonderful things about it. MS is as different as the individuals who get this disease. The only advice I can give you, from my almost 43 years of living with MS, is to stay active, stay positive, and don't worry about the future. Nobody knows what the future holds, whether they have MS or not. Take 1 day at a time, enjoy it. Rest Repeat. I had RRMS for around 27 years, and now SPMS for the past 15+ years. I can still walk, I can't run, If I am walking far, I use a cane, If the person/group I am walking with are walking really far, 2+miles, I don't go!
I am so sorry that we had to meet you under these circumstances. But you will be fine, and you will adjust. And life will go on, and it will be good!
Hello and welcome. I was diagnosed 8 years ago at age 50. I think you will find many here who were diagnosed in their 50's. I have been on ocrevus since 2018.
Think back on any symptoms you had over the years that may possibly have been ms that were minor or didn't last long enough to see a doctor for. I had many over the years that I now suspect were ms.
My unremitting symptoms started in 2014. When my neuro looked back at an mri I had in 2010, she said I had lesions then that were overlooked, hence the rrms diagnoses rather then ppms. I feel the "label" is only important in regards to insurance possibly limiting your choice/access to ms meds.
I was diagnosed at 55. It takes awhile to get past the grief of "losing" your perceived future. Once you get past that, you can make yourself a new future. If you need talk therapy to help, go for it!
Thank you all so much for your replies. I want to add that I am staying very positive. The "why me" comment is more about trying to figure out a reason for this disease rather than feeling sorry for myself. I was actually relieved with my MS diagnosis because I worried that I had ALS. I am so hopeful about my Ocrevus infusion and I keep thinking that if it can slow down my progression, I can easily live a happy, full life.
You better believe it! I spent all of adulthood as the primary or sole financial support of my household, and I generally loved my work. It was a shock to the senses when I had to quit several years ago and go on SSDI, but I'm having the time of life now! My days are my own, and I do what I want.
I felt relief when diagnosed too. I have been on Ocrevus since 2014 when it was still in clinical trials. I feel fortunate there seem to be lots of DMTs being developed. The first 2 I took didn't help me but Ocrevus is slowing it down.Praying you maintain your function for a very long time.
I think alot of us go thru that, MS just doesnt care.. Researchers are still looking for the Why, from Vit. D deficiency to where you live.. Have you checked out MSAAs site? They have some of the latest research on it🤗💕🌠
Glad you found this group. I was diagnosed for my 50th birthday. That was almost 18 years ago. At the time there were only 5 or 6 meds to choose from. Now there's so many more. Not all treatments work for everyone or work the same for everyone. This disease is as different as people are. The best thing you can do is learn as much as you can about MS & all the different treatments. You can keep a journal of how you are feeling & symptoms you are having that day along with what activity that day. It can help put things in perspective. Most of all take it one day at a time & realize that MS is just a life change, not a death sentence. You just have to adapt to the change & use it to your advantage. Everyday is a new adventure! Prayers & blessings to you.
I really like what kdali said, some people experience slowing down of symptoms with age. My experience has been a vast improvement. I strongly encourage you to keep exercising, as it appears to be key in staying strong through this journey. I didn’t exercise enough. Now I try to do something everyday, gym or hiking. People who have been here long enough know that I have been very sick with this disease in the past, but now much improved. I’m now almost 62. It’s good that you are here. We are a big family of people who share our lives, good, bad, ugly and funny! And believe it or not, there are some funny things that happen because of this illness! Welcome.
sadly, as everyone has said - everyone is different; the disease is different for each of us and how you choose to deal with it is different. I think we all have good days, bad days, and we take the wins when we have them and we support each other when we are having a low day. Welcome to the family.
Why me!!! Why anyone? God chooses. I got MS when I was 54 years of age. We should be happy that we got it so late in age. Some people have MS as young as 14 15 years of age. I was diagnoised with diabetes 2 the same time. Was in the hospital for 3 weeks. Its no fun!!
Try to get some humor from MS. The library might have some books that you might enjoy reading.
I am so sorry for you I know is't very SCARY! "been there done that'. I was 41 barely, there is NO AGE requirement I have been dealing with the MonSter for almost 30 yrs since I was diagnosed! there is a lot to deal with I am sorry to tell you I have young people (16) was the youngest I think & I have know a few who were in there 60's. more later I'll be praying for you Mary.
RTR1 welcome to the forum. You'll find great resources and support from the many folks on this forum who have similar questions.
I was diagnosed at 52, 4 years ago. I still look at it as the best thing that happened to me because I finally got an explanation to the symptoms that my PT always attributed to menopause (fatigue, brain fog...). The trigger for the diagnosis was double vision.
After 6 months on Ocrevus and a tight life style (yoga, pescatarian diet, exercise), my MS went stable (no active lesion, no new lesion). And it's been that way since. Lhermitte syndrome is almost always gone.
Have faith, put all the right tools on your side, which it looks like you're already doing. Have patience as MS is a disease for the long haul. Even just trying to understand what it is. I read books and books on it. And the first 6 months were excruciating, having to wait 6 months for the MRI check to know whether Ocrevus was working for me & my brain.
I try to look at the bright side. Thanks to ms, I have a much cleaner lifestyle, and probably overall healthier.
first welcome. the uncertainty is something that takes time. it's not like i've ever gotten over it and every time i have a new symptom, i freak out all over again, but for the most part, i understand (logically and emotionally) that i have an unpredictable illness. even though you were diagnosed at 55, it's possible there were things going on before that. also, it's a different struggle being undiagnosed (i've been in limboland--without a diagnosis--for years and years). now that you are, you can fight back. i hope you keep sharing here as it's helped me immensely, knowing there are folks out there who understand.
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