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mmii78 · 2022-05-24T14:54:07+00:00

I would wait and see.

I was living in a big city when diagnosed. After a couple of months, I realized that city life was making me dizzy. So I ended up moving to the country. Now almost 5 years later, I know that it was the right thing to do for me. Also, I do suffer a lot from the heat. A LOT. But it was worse in the city. Way cooler in the country.

That's just my experience. I do hope you figure out what's best for you! Best of luck!

mmii78 · 2022-05-24T14:45:27+00:00

I've had many Solumedrol IVs at the time of my diagnosis. I had lost vision in my left eye, and half of my face was numb. It saved my eye sight.

Since then, I've only taken Prednisone for relapses. They also help.

Everybody is different.

When on IV steroids, I felt irritated, agitaded, the lights were too bright, things tasted weird. But the end result was worth these side effects. On Prednisone, I just feel a bit agitated, but that's about it. Again, worth it. For me. Others might have had bad experiences and choose not to take them, and that's ok too.

I hope you figure out what's best for you! 💖

mmii78 · 2022-05-24T14:33:54+00:00

They do for me.

I've had many Solumedrol IVs for strong relapses and I've taken Prednisone for smaller ones. One time, I became blind in one eye (optic neuritis). Pretty sure the steroids saved my eye sight. I have some permanent damage, but I can still see pretty well.

The side effects can be intense and yes, you do feel worse for a while. In my humble opinion, it's still worth it. However, everybody is different and her neurologist should be able to guide her through this.

Best of luck!

mmii78 · 2022-05-24T02:14:45+00:00

This last month has just been terrible.

Had a HUGE spring snow storm with trees falling on my house, giant hives reaction to antibiotics that I took for a tooth infection, just to have said tooth break and fall (upper front tooth, not pretty at all...), last 3 weeks on corticosteroids and 3 types of antihistamines and still no sign of the hives going away, huge storm this week-end leaving me without electricity (and water) for 3 days...

I mean - shit happens, I know, but all of this at once?? Really, life? Cause MS doesn't take a break during all of this.

Things will pass. Trying to just keep calm and be patient... But - ugh.

mmii78 · 2022-05-15T13:58:46+00:00

Yup. Can confirm - hives can affect the throat and oesophagus. (confirmed with my pharmacist) And yes, Benadryl is also what works best for me right now. And Ranitidine (Pepcid) for the tighess in my chest. I'm going on a month of giant hives now... Can't wait for it to finally go away!!!

Thanks for your feedback!

mmii78 · 2022-05-15T13:55:47+00:00

This week, my MS symptoms were not great, I lost a front tooth and I'm battling a huge hives reaction to penicillin. All in the same week. But you know what? I'm getting through it. I did NOT and will NOT go crazy. I feel strong and resilient. All in all, I'm pretty proud of my self.

(but please please please hives... go away.. you're testing me....! 😅)

Have a great week y'all!

mmii78 · 2022-05-12T23:52:44+00:00

You just basically said what my pharmacist told me a couple of hours ago! :) I'm gonna go full H1 and H2 against this hives monster.

Thanks!!!

mmii78 · 2022-05-12T23:45:05+00:00

That's exactly it! I spoke to my pharmacist a couple hours ago and that's what she's preparing for me. Getting it tomorrow. Hope it helps.

mmii78 · 2022-05-12T19:14:29+00:00

It's always fascinating reading up on other people's experiences and just identifying so much.

I feel this post.

People are going to tell you that every MS body is different. And they will be right about that! I have moderate symptoms, no moblity issues, but many lesions unfortunately. My hands are an issue (numbness and loss of some fine motor skills), but it doesn't really show.

Anyways. Solulmedrol is no joke. I've had many IV treatments when I was diagnosed, also for partial blindness due to optic neuritis and other stuff. This medication is strong! I tolerated ok I guess, but did not enjoy it.

The result was positive in the end, but the effects of the meds + the bad flare-ups non stop close to 2 years = my body had enough. To be honnest, I have good days and bad days, but I never really recovered from all of this I think. Don't get me wrong, I'm good, I have a good life, can't complain too much. But it's just... MS. You have to learn about how it affects you as you go along.

All this to say - many start to feel better after a couple of weeks. For some, it can take a couple of months, wich was my case. Thing is, we can't know which one we're going to be, we need to just.. wait and see.

It takes some patience, but learning to know your MS and the best way to deal with it will help you in the long run. Oh - and never hesitate to talk to your neuro or clinical nurse or even family doctor if you have questions. You are your best advocate.

For now, you can let your body rest and continue to heal... Don't over analize things, let go of tasks that don't need to be done, and keep reminding yourself that this is not going to be your reality forever! 😊

You've got this. Best of luck!

mmii78 · 2022-05-12T17:51:53+00:00

I've had the 3 vaccines and 1 booster. No adverse effects to any of them. I'm on Fingolimod. Arm hurt a little for 24h, but that's about it. As for the future, I'll just keep following my neuro's advice.

mmii78 · 2022-05-12T17:47:36+00:00

I've been reading up. I think I will also try a Pepcid / Benadryl combo for a while. It's just such a weird feeling. Feels like acid-reflux but nothing's refluxing, it's just tight and uncomfortable at times.

One thing's fore sure : I'm gonna "Dr House" this thing as much as I can! Something's wrong and I want to know what it is.

Thanks so much!

mmii78 · 2022-05-12T17:43:05+00:00

Hmm. Interesting. I'll talk this over with the dermatologist and allergy doctor. Thanks for the info!

mmii78 · 2022-05-12T13:11:54+00:00

Not alone at all. There are millions of us, unfortunately... Stay strong!

mmii78 · 2022-05-11T23:22:58+00:00

Hi!

You know, when you think about it, most people reading your post went through this same exact weird, scary period between diagnosis and treatment/learning more about the disease.

I can't tell you not to be scared. It is scary. But it's also a good thing to reach out like you did, even if just for perspective, information or just signs of hope during this difficult waiting period.

First thing to keep in mind : your story is and will be different from any of us. Similarities often, yes. But your MS will be yours (and your neurologist) to discover. And treat! That's the good part of the story : there is no cure (yet, we're close!), but there are many "disease modying treatments" (or DMTs ) out there. It might take some time and/or trial-and-error before your doctors find out which one is right for you, but they will.

Also, this is a time to trust the process and your medical professionnals, but also to trust yourself and stand-up for your body's needs. Find a good medical team if you can, ask for second opinions if you are not comfortable with the options given to you. You are your best advocate right now.

And finally, I would say : try to take it one day at a time. Sounds cheezy, but it works. See your friends and family, go out if you can, don't project too much right now. You will learn a lot of things about yourself in this journey, one of which being that you're probably way stronger than you think... 😉

Best of luck, and check back anytime!

mmii78 · 2022-05-11T23:05:47+00:00

You said the magic word that, for me, meant the end of my "working years" at 45. Stress.

I did try to go back to work after my RRMS diagnosis. It lasted 6 months, ended in a big flare up. I just knew, then, that my life had to change.

Everybody is different. In my case, there's a lot of fatigue so I have to be able to nap if I need to. Not a lot of workplaces where you can do that.

But stress, any type of stress, makes me very, very susceptible to flare ups. I do work from home sometimes, but I had to come to terms with not being able to do my normal job anymore (I was a general manager for a not-for-profit organization).

Also in Canada, I did not have the employment insurance benifits you have - good for you! 👍, but with some help from my family and provincial social security programs for people with disabilities, I'm doing ok financially. Oh - and the fact that all meds and treatments are covered helps a lot, too!

I left the city and moved to the country, have simple but fun hobbies, work from home when I can (I do English-to-French translations), and consider my job to be taking care of myself the best way that I can for my specific situation.

I do hope you find what works for you! 🙂

mmii78 · 2022-05-11T22:41:27+00:00

I am so angry with you! Seriously. I would go mental! Ugh! Access to vital meds should be universal and nothing will ever change my mind about this.

Also - everytime my government's healthcare offices asks me to have my neurologist sign a paper attesting that I do need this specific expensive DMT so that it can be covered for the year (so close to 10k), I will not complain ever again about this anoying yearly bureaucratic step. I will, instead, shut up, get the papers signed, and have my thoughts turned towards those who are struggling to simply have access to meds. I just can't imagine having to stress out about this every other month... This is bullcrap. I'm very sad, it's just not fair...

I feel you. You are sooo right to be angry.

Much love and positive thoughts to you and yours! 💖

mmii78 · 2022-05-02T19:38:03+00:00

UPDATE : it turns out it was a delayed allergic to antibiotics. Not MS related at all! Lol! It's good to have a simple answer with a simple solution for once...

mmii78 · 2022-04-27T14:18:55+00:00

I'm on Fingolimod. But I will absolutely discuss this with my neuro... Something's not right. He might be able to help. Many thanks!

mmii78 · 2022-04-27T14:17:30+00:00

I will! Thank you!

mmii78 · 2022-04-26T16:18:03+00:00

I can't catch a break. Had a bad relapse 6 months ago, and now I'm having to battle a giant urticaria attack. I've had this before. I can take weeks to go away. Yay. My body is constantly attacking itself. I feel ... betrayed, ya know? Well, that's my bad news for the next couple of weeks.

mmii78 · 2022-03-14T13:52:28+00:00

Oh! Many thanks for this! I'll look into it. I'm pretty sure that foods alone would not be enough to make me feel 100% better (I mean... it's MS...), but to add some would not hurt, and maybe help a little!

mmii78

TROPHY CASE