1 year of being diagnosed with MS

[MSFlea]

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!!🧡🧡

[CatsandCars]

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! ❤️

[MSFlea in reply to CatsandCars]

🧡🧡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!🌼

[CatsandCars in reply to MSFlea]

That sounds wonderful!

[Cwright170994]

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.

[bookish in reply to Cwright170994]

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.

[Cwright170994 in reply to bookish]

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 😕

[BettysMom in reply to Cwright170994]

Midazolam

[Cwright170994 in reply to BettysMom]

Yep, my phone's "autotext" thing is an awkward b-word 🙄 sorry 😞

[bookish in reply to Cwright170994]

Hi, folic acid, as part of the folic cycle, one carbon metabolism and methylation, is needed for every cell in the body, not just for nerves (as is B12). It works so closely with B12 that the symptoms that you get in B12 deficiency are actually due to folate deficiency, as it gets stuck and cannot fully metabolise without B12. Which in some cases means that serum folate can be high, rather than low, in a deficiency state. Unfortunately, epilepsy treatments often work by depleting folate, so you may not be able to supplement - you'll have to take advice on that. Sometimes it is possible to use folinic acid, for example in those with RA taking methotrexate, which does a similar thing. I would ask for your B12 to be checked though, as lamotrigine dose often correlates with level of B12 and it is a frequently missed deficiency.

If you've been taking 1000iu D for a long time it would be a good idea to retest to make sure that your level is high enough but not too high. Fat solubles can be overused and absorption varies hugely between individuals. That would be nothing like enough to keep me at a decent level. Cheers

[Cwright170994 in reply to bookish]

Thank you so much for the information! I'll have to have a good discussion with my neurologist about this when I next see him 😁 thank you so much again 😊

[MSFlea in reply to Cwright170994]

Cwright170994 So sorry to hear about you not being able to get that steriod! That is awful! But, as my favorite alarm now sings to me, "always look on the bright side of life🎶 I don't remember where I found that, and it is rather loud, but it cracks me up when I hear it😂 Glad you are on a treatment that you like now. I've only had the one infusion of Ocrevus, so I'm going to give it while to see how it does, but I do rather enjoy not having the monthly injections and then days of side effects afterwards!

To keep my mind active, I'm doing reading into the old Stoics philosophy, mostly by this one author, he's really good at bringing it to life, and has several books. My new favorite saying by them is Amor Fati, 'love your fate' (roughly translated as how they meant it). And the author continued with, "love all of your fate, the good times, and even the moments of h#ll." And after this year, I really felt that. I know it has only been one year diagnosed and having worse symptoms, but I've been having a slow build up of symptoms for a long time. And, as I was telling my husband the other day, I may have less energy, and not be able to do as much, but this is my one life, and I'm going to live it the fullest I can 🧡🧡🧡

[Cwright170994 in reply to MSFlea]

It's alright. I got some from India, and I only take one as and when needed 🤷‍♀️"Always look on the bright side of life" is the song at the end of the Monty Python film, The Life of Brian. I really do recommend you watch it 😜

My alarm WAS the beginning of the Lion King's opening song. Woke me up quickly just to turn it off so I wouldn't be late getting ready and heading to a nursing placement (7:30 starts, with an hour bus route, and 30 mins to walk to the stop that the bus stops at). Now, i either wake early, or my husband's alarm goes off with news and weather. I'm still out of bed earlier than him 🤣 our (his) alarm comes through the Alexa device in our bedroom 😅

One of my favourite phrases is, "veni, vidi, vici." It's Latin for "I came, I saw, I conquered." I read it in a fantasy novel for young adults, The Blade of Fire, by Stuart Hill.

I'm keeping my mind proactive byyyy....: listening to audible books, very often about ancient Greek gods & heroes, playing sudoku, solitaire and learning Spanish. For fun I play D&D with my husband and friends 😅

[Frances_B]

Re pacing:

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...)

Far too often I'm 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.

[CatsandCars in reply to Frances_B]

Very well put.

[MSFlea in reply to Frances_B]

Frances_B Thank you so much! I overexherted myself two weeks ago, and thanks to medical appointments and having to take my Teens to school, etc, I still have not recovered! I now find myself saying, I just want what I had gotten used to as my 'normal' energy back! Thankfully, so far this week only has a few appointments and I'm hoping I can get some naps and extra rest time in. My teens are actually close to flying 🐦 the nest! But, I think that will actually mean a LOT less clean up will need to be done around the house 🤣

I love the last question especially! 🧡🧡

[Frances_B in reply to MSFlea]

Now you just have t put it into practice - always easier said than done

[whwiechm]

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.

[CatsandCars in reply to whwiechm]

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.

[falalalala]

My husband pushes me around in the wheelchair and it's pretty awesome as there's no way I'd last walking around.

I have ended up in a clothes rack while shopping with him though.I told him that I wanted a closer look at some shirts.🤣

Adventures await you!

)

[MSFlea in reply to falalalala]

falalalala I am very much looking forward to the possibility of places that open up once the wheelchair arrives! And, for places that have more hills, or will be longer excursions, I've seen videos of things that can attach to it and give a 'boost' so it is not too much to push it!! I don't know where to get those things, but I'm sure with some research I can find them! 🙃

My younger Teen needed some things for lunches for school (school food is gross🤢) so I took her to a nearby store... and I'm used to hubby taking me to the store and I go to the car during checkout. I forgot how long that process takes, even with just a few things! I didn't think my legs were going to make it!

So, even for something like that, I can't wait for it to get here! 🦽

Only thing I worry about is... I actually saw a horribly... self important person, move someone who was in a wheelchair in the same grocery store I use here!! She wanted where he was, so she just pushed him out of the way! The person pushing him had only stepped to the other side of the aisle for a split second, but that was too long for this Main Character Syndrome... person.

[Frances_B in reply to MSFlea]

Do your homework on wheelchairs very carefully and thoroughly - sometimes it can cost more to get a manual wheelchair and a power assist add-on than it does to get a small manageable and transportable power wheel chair to begin with. As far as "power assist add-ons are concerned - there are plenty of different types ranging from affordable to ludicrous $$$. Another thing to consider - many ordinary lightweight manual wheelchairs that can be easily lifted in and out of car boots are not really designed or engineered to cope with extensive use of a power-assist - the lightweight frames can fall apart under the stresses - and if you get a power-assist you will find yourself using it all the time because it gives you much greater freedom and independence even though you are in a wheelchair. And for any "pusher", trying to push a "pushee" in a manual wheelchair up even a very gentle one slope can be bloody hard work - not so bad if the "pushee" is a lightweight person in a lightweight chair, but a somewhat different story if they're not.

If you go down the powered wheelchair path get a cheap manual folding chair as a back-up otherwise you can be stuck without an option if the power chair has a flat battery or needs a repair. Also, in your enthusiasm to be 'mobile", dont rush in and buy too quickly, do the homework and trial the chairs on your shortlist before parting with any $$$.

[falalalala in reply to MSFlea]

Wow! I haven't had that happen. I'd be yelling for sure.The rudest thing for me is the staring as they try to figure out what's wrong with you, especially babies in strollers!🤣

Most people are very kind though. You'll see😀

[Tazmanian]

Good luck with your new neurologist

[MSFlea in reply to Tazmanian]

Tazmanian Thank you! So far, so good! Just have to find an additional neurologist that deals with migraines and headaches now! They made a recomendation, though, so going to try there first. 🧡🧡

[Mayzee12]

I think you will love your wheelchair. I absolutely love finley.

[MSFlea in reply to Mayzee12]

Thank you! Either people love that I have him, or I get strange looks 🤣 Either way is fine me, I have decided to stop caring what other people think! 🧡🧡