Hi :) New to MS World forums, not new to MS - having flare :(

[NintendoGurlie]

Hi, just call me that goofy gamer girl. Gaming keeps me sane, or at least I like to think so! I was dx'd in '08. I have been on Gilenya for about 3 years or so, now I am hearing I might not be a good candidate anymore because of that JCVirus thingie I popped positive for when they originally wanted to put me on Tysbari. To be honest, ignorance has been bliss... but now I have to face what's next head on.

I am having a flare up that has knocked out almost all my mobility in my legs. On Dexamethasone, but nothing like what my old neuro used to prescribe. To be honest, it makes me feel worse after I take it, but I'm a trooper, gonna give it my best. I am supposed to be getting a rollator walker delivered today. The company is nice, but not in tune with getting everything setup and their delivery system, so here's to fingers crossed that I AM actually on the truck. (and excited too!)

Bed rest has been prescribed, but the timing couldn't be worse. My hubby and I are supposed to move on the 1st! He's having to do everything plus his regular job which has inane hours. All I can do is watch. I feel helpless. That's what coffee is good for! Yep, my BBF is my Keurig! LoL Anyway that's just me, hope to see y'all in chats! I think it's great you have chats with topics and all to look forward to!

Take care, and God bless! <3

NintendoGurlie

[SNOOPY]

Hello NintendoGurlie and welcome to MSWorld

Sorry to hear you are having an exacerbation (relapse, attack, flare-up), they can be difficult to deal with. Bad timing for yours but nothing you could have done about it.

Warning: I can be very opinionated when it comes to exacerbations that effect mobility

I don't agree with your Neurologist recommending bed rest. Even when dealing with an exacerbation that effects your mobility it's important to keep moving as much as you can. But, it's also important to balance resting with moving. Complete bed rest can make getting mobile again even more difficult.

A mobility aid is good to use during this process but shuffling around the house will also work. The walker you will be getting is great but a cane would work as well as Trekking Poles (with rubber tips on to protect flooring and great for out doors).

Walking around your home several times a day and resting in between would be a good start. Over time you can extend (slowly) your distance and time.

Steroids won't necessarily get your mobility back to where it was before, it could take work on your part to improve your mobility.

[headrift]

Dexamethasone is a 'roid, which I think is about the best that can be done for a relapse.

Bed rest might feel nice, but yes, being up and moving is the way to be, sadly.

Anyway, welcome to MSWorld. See ya in the chat.

[NintendoGurlie]

Thanks Guys! Great info! Just a note

Hi, I want to thank you for the comments so much, they are much appreciated!

Good news, I can shuffle around! They came yesterday with my "Rollator" to help me get around AND a forearm cane for when this passes. I was just getting impatient, the nurse who brought the items was so nice and helpful showing me how to use everything.

I like the idea of moving and resting some in between jousts around the house. Got a little carried away yesterday, it felt good to move about! Oooh, the rollator has a seat built in I can store water in (And my 3DS LoL) importantly, if I push too hard I can stop wherever I am and sit until I rejuvenate a little. I was able to cook eggs for dinner, then off to a rest with the Ninty! Can't walk on my own, but hey, I can get from A to B now. Thanks for the tips, they really brought me a smile and empowering.

Am I silly waiting for this to pass? Everyday without being able to be where I was (which wasn't great but I was able to walk with a regular cane for short stints to the store where a shopping cart made me feel "normal") I know it's just up to time. I won't lie, I'm a little scared. Also, to be honest, I don't like the way the Roids make me feel. Almost done with the Dex, 2 more days. I feel stronger before I take them for some reason. I'm just a backwards country girl I guess LoL Do everything in reverse!

Thanks again for the welcome and tips and hope to see y'all around the forums and I tried chat too. MS World is like a support group in my eyes. It's nice to not feel alone.

Take care all! See you around! **rolls along shuffling** (And it's purple! *YaY*)

[REG53]

Hello NintendoGurlie,

Welcome to MSWorld, this site has really helped me. I am sorry you are in a flare and having trouble walking. I use a cane, rolator, and scooter. Your post reminded me when I had a really bad flare and could not get out of bed my neuro ordered some PT. Just wondering if you are having PT?

I hope you get better soon.

[limppy]

welcome

Hey girlie welcome glad to hear your up and gettin around good to have a rollator hang in there
we're all in this together .nice to see ya in chat !!!!!!!

[SNOOPY]

Got a little carried away yesterday, it felt good to move about!

I know it can feel awesome when you can move around but really try not to over do it.

REG53
Just wondering if you are having PT?

I am wondering this too.

Exercise and PT can be very beneficial. When I was diagnosed I didn't have much for mobility --- I shuffled and not very well. My Neurologist told me the best thing I could do is walk. He saw the look on my face () and said, I know you can barely walk but walking will help.

So, I walked. Started walking around my house several times a day, after awhile I was able to walk half way up my driveway and back several times a day. Ever so slowly I increased my distance. After each time of walking I would sit down and cry, I was exhausted, my legs were weak and shaky, and my legs were vibrating/buzzing like crazy.

I kept walking. It took me a year to regain my mobility and I found 2 miles was my limit. I have had to go through this same process 3 times related to exacerbations and twice for other reasons.

I am a strong believer in exercise and I do believe had I not done what my Neurologist recommended I would have been in a wheelchair very early on.

I still exercise and had been in Physical/Massage Therapy in 2015 which, once again, helped.

[JerryD]

Hi and a hearty welcome to you N- Gurlie,
You have found a GREAT MS community. everyone, here, really pitches in with much valuable and useful information. Please become a regular post er!
I read that you are between DMDs and I hope that you find a good one. I am dx'd with PPMS and I have been on Tecfidera for 2 years. My MS neurologist, an MS specialist, got me into the Lemtrada infusion program, last week. It is finished, now, except for the final treatment, one year from now ( 3 days consecutive ) . The treatment is a 'slog' but it 'stops' the MS. That's the plan !
I don't know which form of MS you have, but, I suspect it's RRMS.
Let me suggest that you seek out the services of a 'bona fide' MS specialist. I've experienced several non-MS neurologists consults. These general neurologists, may be nice people, but don't REALLY KNOW MS.
I spent too many years searching for an MS specialist and I was without treatment for 6+ years. Now I am expecting that the Lemtrada does its best to 'shut MS down'!
Good luck Don't be a stranger

[hunterd]

wWELCOME TO MS WORLD GURLIE!!!!! glad to have you with us!
"Am I silly waiting for this to pass? Everyday without being able to be where I was (which wasn't great but I was able to walk with a regular cane for short stints to the store where a shopping cart made me feel "normal") I know it's just up to time. I won't lie, I'm a little scared. Also, to be honest, I don't like the way the Roids make me feel. Almost done with the Dex, 2 more days. I feel stronger before I take them for some reason. I'm just a backwards country girl I guess LoL Do everything in reverse!"
you are not SILLY for wanting this to pass, especially with moving! It is also only "normal" to be scared, I would have to scratch my head if you were not scared. As far as the steroids go, I have never taken any, so I cannot relate. And do not worry about being a "backwards country girl" because I am just a backwards country boy! LOL

[NintendoGurlie]

Wow! Thank y'all SO much! You are all amazing!

Hi everyone! Thank you SO much for the warm welcome. MS World is outstanding. I don't feel so alone here. I feel understood. The outpouring of support is amazing! I was at the bottom, but you have all made me feel welcome and a part of something bigger than me. The support and tips, kind words are really a boost, especially as down as I was feeling.

To those who asked, I have RRMS. This flare has me scared I'm progressing, but I have faith and strength. Just impatient waiting for time to pass. I take Gilenya, about 3 1/2 years now. I am JC positive and my neuro is concerned. I have to have another MRI this week. My last flare was about 4 years ago, and cog fog keeps me from remembering much about it except that I was in a wheelchair. I pulled through, hoping to do it again. I am looking my MS right in the eye and telling it that it's weak and can't have me. *side note* - These "roids" make me feel worse, only 2 more days though *YaY*

Yes, I would like to see a specialist. My neuro does his best, but I don't feel the connection with him I had with my other neuros before I moved. He thinks this will pass but if not, wants to recommend me to the University of Colorado MS department. Anyway I'm talking too much when all I really want to say to y'all is THANK YOU! These tips and advice I've taken to heart! Thank you for your time and patience!

Well, off to lose myself in my world of games I may sound silly, but they really are a saving grace. (and force me to rest LoL) I look forward to meeting and knowing y'all. The support here is awesome! Thanks for making me feel welcome! Good luck to everyone and let's keep up the good fight!

Thanks again!
Sincerely,

NintendoGurlie aka "Memphis" or Jennifer, nice to meet y'all and thanks! Look forward to seeing you around and hope I can offer help in any way as y'all have done me so willingly!

[Carolinemf]

Hi,
Yep, Yep And Yep to all those before this.
Although it can be a hard push- if we don't work muscles we lose them. And getting any kind of tone back is harder.

I have only taken steroids twice and they made me feel so bad that i chose not to go down that path again. The recovery time for my relapses didn't seem any different either despite what the doc's said.

I am now spms but have had ms for 30+ yrs. I have recovered from complete paralysis in one flare to looking 'normal' to the outside world. So i hope you find that encouraging.
All the best.

[JerryD]

Hi again, JerryD, here...
I need to add that I believe that this disease has confounded the medical world for several HUNDRED years. It's been formally described in medicine since the1850's and still it's a mystery.
I suggest that you GET TO AN MS SPECIALIST ! Do not fool yourself into thinking that you will overcome a 'flare' or relapse ! Flares are waiting to rip into all of us, MSers ! You can wait them out but it harms your body and doesn't truly heal up ! Steroids reduces inflammation. They don't heal anything.
I am not a doctor. You don't need to believe what I say. Please, for your sake, take my advice ! Good luck

[Keyoung]

New to the MSWorld

Hi Everyone, My name is Kendell I was diagnosed with Progressive MS. about a year ago I know it has affected my mobility a lot Glad I can come here to get answers

[Tia1]

Welcome to the family. I hope that you will have a quick and complete recovery. Whats your favorite game?

[Fishytrout]

So sorry to hear this, Gamergirl. Has your Neuro prescribed any PT? I was unable to walk 3 yrs after my diagnosis, but with PT and getting on Tysabri (I know that is not an option for you) I was able to use a Rollator then graduated UP and UP, til I walked on my own again.

You are under a lot of stress. Please do what YOU can to lower it. Do "keep your head up", stay strong and take DEEP BREATHS. It CAN improve for you (watch for the LITTLE improvements) HUGS, my MS sister

-LM