Unfortunately, I just read an article on how Multiple Sclerosis impacts an individual's biological age. Statistically, individuals were about ten years older than their chronological age due to all of the biological factors involved with the chronic, progressive & degenerative disorder. Even at the cellular level, I had no idea what "a toll" MS really has on our genes. MSers statistically die seven years before their chronological counter parts, too.
Yikes: I was diagnosed with MS at age 26 in 1994, no DMT's then, at age 29 I started on Avonex, due to the fatigue & cognitive dysfunction I "medically retired" on SSDI at age 45. At age 55, I started on Aubagio, a daily pill, after 25 years of intra-muscular injections with Avonex. I intend to stay on a DMT for life as MS is a like a tattoo; it's always with you. Progressive diseases progress despite my best efforts.
Now, I fully understand why, despite my stable MRIs, I am progressively getting worse. My balance and my bladder especially. And, the mood swings have shown up: MS or Menopause? Even the doctors don't know. Aging with MS is a real journey! Thanks for letting me vent!?!? 😱
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donna0329
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The MSAA webinar last week mentioned that your MS symptoms that you feel and see are like the tip of an iceberg. The rest of the stuff it's doing to us is the huge thing under the water. Yikes! That's terrifying. I like the emoji you chose!
I can really relate to your post. I was diagnosed at 32 and on disability by 38. I got to go on Avonex right away, but I switched to Gilenya about six years ago, then to Ocrevus about two years ago. I still had a relapse last year, which was weird because I hadn't had one like it, ever. I'm so thankful most of those symptoms went away, but I have quite a bit of pain from worsening spasticity, which has really gotten bad over the past couple of years, particularly pelvic, hip flexor, and neck muscle pain. And the moods! I hear you. I've always been irritable at times. But I have this horrible temper now. At times I almost feel possessed, and not necessarily over important things. I thought it was menopause, but it's been going on so very long I'm having my doubts. The psychiatrist thinks it's my MS (a handy thing to blame) and my neurologist doesn't. I spend a lot of time trying to hold it in, which isn't supposed to be healthy, but I want to stay married. 😁
I'm going to try not to be my usual "glass-is-mostly-empty" kind of girl and say that there is a TON of research going on now to treat the underlying processes and stop progression. We just have to hang in there as best we can and see what medical science can come up with! I'm 57, but if I'm biologically 67, then yahoo! I look freaking great for my age! 😆
Sorry you're in this boat, but I'm glad to have you with me in it all the same!
I really feel your pain and horror. Was clinically definite diagnosed in 2015. I was 21. I was able to keep myself moving and working, often on my feet for a long time, until late 2019. I was 25. I couldn't continue working. I needed a walking stick to get around the house, and if I'm outside the house for some reason, I need my wheelchair 😞 I battled the UK's version of disability benefits to get mine. At 1st, I was denied, but after I got all my medical notes and had them printed out, I appealed their decision. They backpaid me from the beginning. I was so happy! I've even got the Enhanced Mobility part of the benefit 🙌 I'm now feeling safer walking with my rollator outside my house. I can walk without the need of aids inside my house. The recent DMT I was on (ocrevus) has given me the strength to walk similar as before! I temporarily switched to kesimpta last year, but I'm not a fan of it, so I asked them to get me back on ocrevus... I'm starting again on the 28th of this month 🙌🙌🙌
Thank you 🫂❤️ and I can't wait! Just another few weeks before I get the 1st of my 'starting doses' 😝 ignoring the fact I've been on it previously 🤣 hubby's taking me to both of the bloods and ocrevus appointments! He's able to take half days for the blood appointments, because they're at 5pm 😱 and because the ocrevus is a 'long day-er', he can drop me off at the hospital, do whatever he wants for the rest of the day until I call him to get me 😁 I'm thinking of paying for tea/dinner on those days, rather than using our joint account!
I can relate. I haven't been driving much for a couple of years now because my meds make me sedated. My husband has to take me to all my stuff, too. He works from home and his schedule is pretty flexible. The benadryl from the Ocrevus makes me really sleepy. I drove myself to my first half infusion, then had to call my husband to come get me when I was done. I like the emoji you used for having to be at the hospital early in the morning for Ocrevus! 😱
I guess it depends on whether you're a night owl or a morning lark! 😆
Antihistamines make me really sleepy as well! I definitely fall asleep when getting the infusion, because the nurses have to wake me up to do my observations 😅 I'm a morning person, but my hubby's a night owl 😬 and my ocrevus appointments start at 9. I'm going to wake us both up at half 7, to then drive the 30 mins to the hospital (if the road's pretty quiet. If we've got enough time, I'm going to stop off at a MacDs that's not far from the hospital just so we can get breakfast 👌Never been able to drive. I was so busy with work after school to take lessons, and then I started having simple partial seizures when I was 18, my 1st symptom, and I knew that was it for me. Didn't bother me when I got a letter a couple of years after my clinically definite diagnosis saying I'm medically unable to drive 🤷♀️ that's fine, I've got taxis, buses, and patient transport that'll get me places when hubby's at work 😁
Antihistamines make me really sleepy as well! I definitely fall asleep when getting the infusion, because the nurses have to wake me up to do my observations 😅 I'm a morning person, but my hubby's a night owl 😬 and my ocrevus appointments start at 9. I'm going to wake us both up at half 7, to then drive the 30 mins to the hospital (if the road's pretty quiet. If we've got enough time, I'm going to stop off at a MacDs that's not far from the hospital just so we can get breakfast 👌Never been able to drive. I was so busy with work after school to take lessons, and then I started having simple partial seizures when I was 18, my 1st symptom, and I knew that was it for me. Didn't bother me when I got a letter a couple of years after my clinically definite diagnosis saying I'm medically unable to drive 🤷♀️ that's fine, I've got taxis, buses, and patient transport that'll get me places when hubby's at work 😁
I'm glad you're okay with not driving. I hate it, though. I grew up in a family of car enthusiasts, and I drove for almost 40 years, so I really miss it. There aren't many alternatives where I live other than Uber, which is okay once in a while but too expensive to make a habit. I drove once about a year ago, which was fun. But most of the time, given the choice, I tend to pick taking pills and having less pain over driving. ☹️
It's a shame you don't have other options 😞 I'm thankful the UK has trains and buses I can use, mainly to get to the closest city centre, on a 30min train ride, and my mum's, who only lives about a 30min drive away, all on the same line! My local train station is finally going to be having a lift put in so I can treat myself to leaving my town without hubby having to carry my wheelchair down/up! It's taken f*cking forever, but I cannot wait!
I read something like this in my doctor brother’s medical books back in 1985. I had chosen to believe it was just outdated, pre DMT information. Maybe not. But what can we do! Just keep on moving I suppose. 😳
It actually could be, now. Think of how recently these high efficacy drugs like Gilenya, Aubagio, Ocrevus, and Kesimpta came out. Tysabri was earlier, but was not for everyone. It could take decades for the effects of better drugs to affect the longevity statistics.
This sounds very familiar. Someone wrote on here recently about getting on their own last nerve. Everything annoys me, I annoy me. I don’t want to say anything to any of my doctors. They’ll pass me around for months, shrug their shoulders, blame another body part or my mind and tell me another drug I could try. Prescribed 150mg pregabalin bid 3yrs ago for pain. Didn’t touch the pain but helped my mood.
I feel anybody would be irritable in these situations. In the last 3yrs my little sister and brother died, so did my lifelong best friend (that I lived with), then other best friend died, lost everything in monsoon, had to move away (from everyone and everything I’ve known since I was 7) to other coast to Mom and new stepdads (3rd floor bedroom), etc etc. But I didn’t die. I’m supposed to have feelings.
No need to isolate myself. Looked into paratransit. You know how it goes, nothing ever comes to my area or extra charges apply or that 1hr window on both sides of trip that makes things challenging. Can’t afford own place.
Diagnosed at 32. At 60, it’s all the same news. I’ve tried the myriad of drugs thrown at me, regular and complementary therapies, heard about great things coming, exciting studies/research/,breakthroughs. None have applied. Aging is not for sissies. Aging with ms is…🤬. Really trying to keep water in that glass, however, feeling dehydrated. God is my constant companion and I’m looking at churches in my new area in VA. They will usually come get a person. 🫧
I'm so sorry for the loss of your siblings and your close friends. That alone is more than most people have to deal with, then to lose your home and have to move...it sounds like a nightmare. I know you have a lot of difficulties getting your pain meds, too. There really aren't adequate words, Wtfisup. It really seems like there couldn't be anything more that can happen to you! I sure hope that good things start happening for you at some freaking point!
Good luck with the church. That would be uplifting and get you out of your third floor bedroom. Reminds me of Rapunzel!
I found out in 2012 that I have ms, was put on avonex for a couple years but it messed with my thyroid so I had to stop, started with tecfidrera for a few years then it started to mess with my blood counts, I have been on Aubagio for a couple of years now, have some numbing with my feet and legs and also mood swings not sure if its the ms with the mood swings or just me getting jaded with whats happening around the house hold and world, Hopefully things will get better for us all, Richard
Thanks, my MSAA Family for responding to my latest post. I just read that article. I suppose I'm a bit naive, but it summed up exactly how I feel. And, that makes sense to me.
Yep, we all have to try and hang in there and support each other as needed as "we get it" suffering with this MonSter! Blessings! 😇🙏🙂🤞😽
I was watching this video, and at one point the doctor showed a slide saying MS patients live around five years less than other people, but as he spoke he said that wasn't true anymore and that the number was going down.mymsaa.org/videos/introduci...
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