Image is of MS Adventure Buddy Finley in a chair right before I got an iron infusion (I'm also anemic!)
One year ago today, I received, by phone call, my Multiple Sclerosis diagnosis. I'm still adjusting, still figuring everything out... especially the energy and pacing portion of it! Pacing is one of the most difficult things for me! Doesn't help that my energy fluctuates from day to day, and I'm obstinate and think I can still do more than I actually can 🫠😂😅But there are so many things to learn about having MS, I feel like life throws about 4 years worth of college text books worth of things you need to know just having MS, and you have to figure it out, or Google it, or pepper your neuro with questions (which they may or may not answer), just to figure out how to 'do life' with MS. Having found this community has been wonderful. You've been amazing, and helped so much. Then there are the new symptoms that crop up and you get to play two games with it. The 'is it MS or something else' game. And the 'is it or is it not a flare' game. 🤣
I laugh because laughter is the best medicine. And if I don't laugh, I'll cry. And the times I've not been able to laugh, have been the hardest. Don't get me wrong, it's okay to cry, it's okay to say this is crap, because it is. It is awful. But that why I laugh, too. I find the good things. Not just that. I go further than that. I make good moments and okay moments. I find things that will make good moments. For example, I found a hairbrush that makes me smile, and keep it in my bathroom, so every morning I smile when I see it. Small things to brighten my day 🌞I have a daily calendar by The Latest Kate. Makes me smile. Reminds me we are not perfect and don't have to be (thank goodness!).
I finally saw an actual MS neurologist! I was impressed by the difference. I also switched to Ocrevus, but I did that before changing neurologist. The MS neuro doesn't want to see me for my headaches and migraines, because they go all the way back to over 20 years ago. Could still be related, but she feels they are not (I got the feeling she doesn't really do much with that kind of stuff anyway, so I'm okay seeing a neuro that specializes in migraines and headaches). I got a LOT of referrals from the appointment with her. Everything happens there at the same hospital the the MS Institute I'm seeing the new MS neuro at, which is cool. I'm going to see a pain specialist, I got all new MRI's (spine, c-spine, and brain), and *happy dance* I'm getting a wheelchair!! Not till June - so no going places that I have to go any distance at till then. I've been sad that I can't really do anything much. I mean, some places have wheelchairs you can rent, but they are terribly uncomfortable, and not made for someone as short as I am (I'm only an inch above 5 foot!). I really want to go places and do things, there are so many things that are close by, but most I'd have to do a lot of walking for, and I just can't walk that far.
I like Ocrevus so far. I mean, to me it is better than having all the side effects I was having with Kesimpta. Don't get me wrong, Kesimpta was doing it's job, I was just having more side effects than I was comfortable having.
I'm so glad to have found this community. I'm not very active, I'm still in a stage of life where my teens are needing Mom - and yet not needing Mom 🤣🙂And I'm still very much trying to figure out this whole MS thing. Especially the pacing part. If you have any tips on that, please do tell. I'm struggling hard with that. Though part of that is because I'm so hard headed 😂😅 And I'm used to doing everything myself. Gotta learn to delegate while I can!!🧡🧡
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MSFlea
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What a lovely post that summarizes so well what we all struggle with! While it's a dubious anniversary, I'm so very glad that you're here with us.
I don't have much advice on pacing yourself, as I haven't discovered the secret myself. Although I have discovered that I'm not fond of discussing energy in terms of spoons. 😁 To each, his or her own.
I hope that the wheelchair will allow you to have many adventures to come, and that we'll get to share them with you! ❤️
🧡🧡Thank you! I'm looking forward to many wheelchair adventures! Although I hope to have a few before I get my own! 😀I discovered that the botanical gardens nearby has wheelchairs to rent and looks beautiful online, and I'm hoping to go explore it in the Spring, when the daffodils (one of my favorite flowers) is in bloom!🌼
I use the same saying, "if you don't laugh, you'll cry" 🤣 I'm coming on 10 years of being clinically definitely diagnosed. My 1st neuro is an MS specialist, but he moved hospitals and so I was under a neurologist who specialises in alzheimers/dementia. He still got me on ocrevus, after I had a really bad relapse that got me hospitalised while on copaxone. I changed hospital trusts, because I'd moved, and the closest hospital to me (the one where I was hospitalised) is in the same trust. This neurology team are mainly MS specialists! The 1st one I saw with them knew of my 1st neuro!
I did get a letter saying I was eligible for kesimpta, and so I tried it. Didn't like it and, because I had a night in hospital before I was due to do my injection, they quickly switched me back to ocrevus.
They've put a note in my files, however, that I'm not allowed to get methylprednisolone for some reason. "It's a placebo!" I am told. Tell me why, then, when I was in that 27 day stay in hospital I felt like I'd gotten some of my mobility back when I had infusions of it 😡 I only use it now when I'm in the crap gap and my right leg doesn't want to work anymore. So, I've had to get some from India. I do only have them as and when needed, because I know it's got immunosupressant properties.
Enjoy your life though! Everyone who reads this, enjoy your lives! If there's an obstacle, you can find a way around it, even if you need to jump through hoops just to get there.
This may be complete rubbish, apologies if so, but is it possible that the methyl in methylprednisolone can act as a methyl donor for methylation/one carbon metabolism? If so, you might benefit from an alternative methyl donor. I would hope with MS that you are already getting vit B12 injections to help support the myelin and nerves as far as possible, and this is likely to be hydroxocobalamin in UK, but folate is very much part of the same processes so you could add a small dose of methylfolate and see if it helps. I don't have MS but other neuro stuff and a long-standing B12 metabolism issue, and I use a few drops of liquid methyltetrahydrofolate from Metabolics. But you'd need serum B12 and serum folate tested first, if not on any B vits, so you have a baseline. Self supplementing will skew all that so if you have a deficiency (which is often missed, as hard to diagnose due to no testing being available which can actually rule it out) then you'd make it very hard to spot and not necessarily help the problem. Injections work for everyone, oral/sublingual only works for some and you have no way of knowing - it can raise serum without repairing damage, as happened to me.
I've had a small folate deficiency seen in my bloods, but none of my Drs have prescribed me anything for it 😑 will have a chat with my neuro when I get a call from them soon. Currently, I think I'm stable. I've not had any seizures since being upped to 250mg lamotrigine twice a day, so that saves my husband from having to call for an ambulance when I have a status epilipticus. The epilepsy nurse did say something about prescribing me buccal medazilam, but that's only if I have another seizure with no auras or reason to have one.All I take daily is 250mg lamotrigine twice daily, baclofen 3 times daily unless I need another one when my legs are spasming when I'm trying to sleep, and 1000iu vitD once daily 🙃 I honestly thought folic acid was used to help foetuses with their developing nerves, forgetting that it's needed to "fix" nerves in children/adults 😕
Two key words "prioritise" and "delegate" (you have teenagers - delegating tasks and responsibility for getting them done is a good way of building life skills in teens - it's part of being a good parent)
Another four words - "Is this absolutely essential?"
A critical task assessment question - "Will anyone actually die if this doesn't get done?"
If you use the above then you will find that some things will always be priorities and new things that arise can/will overtake other things on your "to do" list. Things that get overtaken sometimes end up becoming high priorities and get done then. Eventually you learn that it's OK if things on your "to do" list never actually get done - that's why the third item above is critically important - it allows you to drop things off you "to do" list with a clear conscience (unless someone will actually die...)
I'm far to often not exactly successful in using the above principles, but as my disabilities continue to get worse I'm getting better at it - because I have to. And not beating myself up because I didn't get "stuff" done is getting a bit easier, especially as I also oh-so-sloooowly learn to be a bit less over-ambitious about what I think I can get done.
My wife was looking forward to retirement so she could do a lot of travelling and see the country (USA), but with my MS disability that idea has limited that possibility. Not being able to do a lot of sightseeing does not bother me, my company sent me to many places around the country, but I feel badly for her because she helps me and puts up with me so much.
I wonder if there is any possibility that your wife could do a little traveling with a friend or relative? Maybe one of those motor coach tour groups? She probably wouldn't think of leaving you at home, but is there any way that you can get along without her, like if you can manage on your own with check ins from someone, or if there a friend or relative who can hang out with you? I think it would be lovely for you to insist that she find a way to make it work. It would do you both good, I think.
It's very sweet that you appreciate her so much, and that you are concerned for her happiness.
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