Last reply 3 months ago
Any recovery stories ???

Hi Happy Sunday

I just want to hear wether their are any recovery stories or remission stories from ms …
MS hope stories —
I and I am sure many others would like to hear about what you are doing.. I love to here what might be helpful and important for me to add to my day ….

Thanks guys
Rachael x

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marcyg921
4 months ago

I’m certain you read my latest topic on just how far I’d come in the past 2 years so I’ll keep my reply short to the latest one. One of my main symptoms with MS was limping and what I feel now was a heavy leg as people kept telling me I was walking like I was leaning to one side and made my balance extremely bad, heck I couldn’t go down 1 step without needing support and 2 years ago, I remember telling my friend that if we did go to the arena to see a show that he would need to help me down the stairs as I wasn’t confident.
Well anyway for the past 2 years I’ve been seeing a physiotherapist and working at my balance and even though it improved tremendously (I no longer need help going up or down stairs) there was one thing I couldn’t do, and that was go down an escalator. This absolutely annoyed me because I always felt I could, but after not going down them for over 2 years I’d developed a fear of going down them and part of me felt it was never going to happen. That was until a few days ago.
I was in town on Sunday and it was quiet and I saw the escalators and I knew then that it was the perfect chance to overcome the fear I had of them so I just went for it and I managed to do it. I’m now going down escalators when I can because I still feel that fear inside of me so I need to carry on until I’m fully confident in using them again.


stumbler
4 months ago

Hi @rachaellouise and happy Sunday to you too.

I’m not sure that this meets your requirement, but I’m presently enduring my longest period ever of working my legs on my exercise bike. I hadn’t really be able to get on it for a few years, until a fortnight ago.

Don’t get me wrong, I’m no potential entrant for the Tour de France. It’s hard, just revolving the pedals. And, I’ve had a couple of comedy episodes getting off, ending up on the floor.

But, I’m going to persevere.

Whether it’s my personal LDN trial or just sheer bloody-mindedness, I don’t know. But, it’s good for my psyche. 😉


rachaellouise
4 months ago

@stumbler – 😂 lol that makes me chuckle so much… good for the soul.

Well you never know ! Tour de France here stumbler comes … he’s coming for ya Bradley Wiggins … Wiggo

Now back to what you said well done! How long did you do on that bike? I have a stationary . I feel slightly embarrassed lol as I’m struggling with 10 minutes . I’ve noticed that my legs get really heavy . Is this normal ? Should I persevere ? Slow it down .
Yes I get wobbly when off but need to improve my cardiovascular system I feel.
I’ve lost lots of weight since the diet protcol . Got a a stone to go now . Didn’t realise how big I’d gotten .
We will get their stumbler ! We will! 🌈

@marcyg921

No I did read your post and I’m amazed at your progress ! Inspired by your efforts …
I think we develop fears to things in our mind . I think we can do more than we think we can as not sure what we can do when have ms
Yeah keep trying the escalator . There’s many things I’m scared of too that I will have to give a shot too. Fear!


stumbler
4 months ago

@rachaellouise , don’t get me wrong, I struggle. I’ve decided that I’m going to do 1km each day.

Now, that is difficult as my legs/feet had forgotten how to pedal. So, I might only do a few meters before I have to stop and have a breather. But, little and often is a good mantra.

The legs, and heart, will thank you for the exercise. 😉


rachaellouise
4 months ago

@stumbler – you’ll be able to go to your special place soon(fishing ) with nicer weather coming ! I’m going to find one you’ve inspired me to! I’ll keep you posted

I know what you mean about your body forgetting stuff . I think mine forgets so have to tell it again !
What’s 1km then is that Half a mile ish ?
Yeh I’m same have to stop a lot . I’m gonna restart the bike tomorrow but less time and build up see how I do over week .

Rachael x


stumbler
4 months ago

@rachaellouise , since my hospital visit before Xmas, I haven’t been able to get out of the house. Hence my desire to build up my legs on the bike.

I think there is now a confidence issue too, but I’m going to make a break for my car soon. If that’s successful, I can consider returning to my swimming habit.

But, if you can get out and enjoy the beauty of nature, it’ll be worth it.

1km is just over half a mile.


ebaldwin
4 months ago

@rachaellouise

I used to get relapses all the time, I eventually found out it was because of my then fiancé stressing me out so much. I found out because when he left and I eventually got together with someone else my relapses went away. Since being on tecfidera I haven’t had a single relapse in a year and a half and because of it we are now trying for a baby 👶🏻


rachaellouise
4 months ago

@stumbler
I think that’s a great idea to build up the strength . I know what you mean about confidence thing. When you haven’t done something for a while .. I have not drove for a while myself which is a confidence thing and going on your own etc I get dizzy quite a bit.
Having said that good to try ..even if fall flat on my face ! 🙂
Let me know how it goes … as will be great to do things you love to do . 😊

@ebaldwin

Ahh that’s great news . I hope you are successful with the baby making , will be 👍


potter
4 months ago

I had a relapse when I was diagnosed and then a mild one 10 years later. I took Rebif shots for 5 years and Tecidera for 6. I am getting slower at walking and if I stand to much my legs get numb. I am still walking unassisted. I don’t think there is really remission or recovery when it comes to MS. You may think your are in remission and it sneaks up and bites you in the butt. Potter


fingersandtoes
3 months ago

Hi Rachael, just accepted your friend request and saw this post.

I have just discovered Conor Devine, an Ironman with MS. His story is very inspirational. He wrote a book about it which I haven’t read yet (but it’s cheap on Kindle so I’ve bought it). I discovered him on the Train Smarter podcast, so I recommend giving that a listen.

I was diagnosed in November last year and I’m doing fine. I’m training for my first ultramarathon next weekend. Started on Tec in January, have only had a couple of side effects over the course of a week, turned out I had a minor head cold so that might have been why. I had been so worried about side effects but when it happened I did what the nurse told me and took the recommended remedies and I was fine. So it was a bit of a relief actually.

Do you have the Overcoming MS book? It’s free to people living in the UK. I’ve found it very helpful for the evidence-based info on diet, exercise and it advises people to meditate, which I am working on…


openminded
3 months ago

I have just got my eye sight back after 4 years of darkness. Good things can happen. Blindness was caused by the winter flu-jab. I can now watch Game of Thrones without any problems. 2018 has been the best year of my life.


rachaellouise
3 months ago

@fingersandtoes

I Do have the Oms book . I chose to follow Dr Terry Whals . I still take info and incorporate from different books
Thanks for letting me know about the Iron man . I love being inspired . Really helps
Well done to you running marathons . Wow I maybe one day I will run …
Nice to meet you by the way ❤️😊

@openminded

Ah that’s brilliant news , must have took loads of strength to hang on like you have for 4 years .. somethings take time but then healing has occurred ! Really happy for you, you must feel so great

Rachael x


rachaellouise
3 months ago

He looks really inspirational – doing to read more on his website

R x


cobraforphd
3 months ago

Hi,

On June 26th, 2007, I went to bed and felt completely “normal.” I was 27 years old. On June 27th, 2007, I woke up completely numb from the waist down on the left side of my body. Over the next several weeks, as doctors struggled to diagnose me (they were not looking for MS), I also lost all sensation in my right foot, and then lost 100% of my rectal tone and—for several weeks—was actually not able to defecate and instead had to manually disimpact myself. Sorry to be so blunt and gory with the details, but I feel they are important…and you will see why in a minute….

Once I was diagnosed (around July 20-21, 2007), it took neurologists about 2 years to stabilize me. I started on Rebif in October 2007, but had a really challenging adjustment to the medication (white and red blood cell counts comparable to those of an HIV+ person for over a year) and had to be titrated up to the full 44mcg dose over about 9 months rather than 3 months.

Between the numerous relapses I had during 2007-2009, the adjustment to the Rebif, the low blood cell counts, and the ongoing high doses of IV steroids I had to take, I was pretty much functionally bedridden for 2 years.

….and then something changed.

I stopped relapsing in 2009 and have not relapsed since. That was 9 years ago.

None of my MRIs show any identifiable changes since 2009.

My neurological exams have remained basically stable (with some mild changes over time, but nothing significant) since 2009.

Somehow, I regained sensation in my left leg and both feet—-which stayed numb for like 5 years—-slowly over the past 2-3 years. Even my neurologist stated: “This doesn’t usually happen and I have no medical explanation for it.”

I am not “cured” and am cautious of portraying my story that way, because I think it is risky to imagine that an incurable illness has been “cured.”

I will say, however, that my life is good and I am happy.

I have a very demanding (physically and emotionally) job in the Human Services sector. Since getting diagnosed, I completed a Ph.D. and, this coming Fall, am going back to school to get an MSW. I met my spouse and got married. I am very physically active and have no outward, visible signs of disability or illness.

Most likely, I am living on borrowed time and at some point all of this will change. That is the nature of MS. But right now, I have had MS for nearly 11 years, and in general I think my life is pretty great.

Hopefully this is helpful….


sherryak
3 months ago

After I was a backseat passenger in a bad car wreck 12/9/12, all music sounded like easy listening to me. Prior to that, I loved music & it really got to me to hear songs that I KNEW had a driving beat sound like elevator music with words. It drove me insane. Then I switched my medicine to Tysabri infusions (monthly) & one day I realized that I was hearing a song on the radio like it normally sounded. I was SO HAPPY to have music back. I’ve been stuck on music from around 2012 when I had stopped listening to it. I do plan to rejoin the real world, but for now I’m just loving having music back. But my successes have involved medicines. I did my second round of Lemtrada infusions August 2017. So far, I’ve kept my ability to hear music like normal & I have also gotten an ounce of my balance back. My balance still has me functioning like a bull in a China shop, but I can tell it’s a smidge better. And I’ll take a smidge; it’s better than nothing. 🤓


cameron
3 months ago

I’ve had a severely impaired leg since day one (2003) but it’s not got appreciably worse, mainly I think through physio and exercise. I had to give up ‘normal’ holidays in favour of cruises, which are better suited to anyone with a disability (doctor on board, flat/safe walking, being waited on hand and foot etc) and since c.2006 have done most of my trips on the same ship. I always do at least one deck walk in the course of my time on board. It’s a teak deck and three circumferences = 1.1. miles. When I started, I was delighted to be able to do my 1.1 mile (unaided, no stops), well worth the breathlessness and total exhaustion which followed. Years on, there have been changes. I now have an orthotic splint and still no stick, although I do take (and frequently use) walking poles when venturing ashore on these holidays. As a result of the splint, my walking capacity has greatly improved. In 2017 (May) I did eight laps and this month nine, although admittedly I had a break after lap six, which I wasn’t very pleased about! My aim is to be fit enough to tackle the fortnight walking holiday I’ve booked for September. I’m going with a friend and we’re doing easy access walks (Miles without Stiles) designed by the Lake District National Park rangers. It’ll require the poles, of course and we’ll need to be flexible with what is attempted, but my pal also treks in Nepal so I’m in safe hands! I can”t wait to recapture that wonderful sensation of wind in your hair, rain on your face and mountain views. We’re also going to try out Segways. I just can’t wait!


tessa
3 months ago

Hi my story is rather similar to that of @ cobraforphd.
I totally agree about not saying anything is a cure and my current situation proves that but my history is quite similar
I was diagnosed in 1965 when I was 16 …I had one fairly uneventful eposide and then three months later was completely and suddenly totally paralysed from the waist down with impaired movement also in my hands and arms .
I too over a year made a complete recovery ..no issues no relapses no symptoms no doctors no meds! 45 years of complete remission.
After 45 years my walking began to deteriorate and I went for my first MRI which showed up some past neurological damage consistent with my paralysis but nothing of much note according to a consultant radiologist friend of mine who saw the images .
My consultant at Barts also was amazed at my history and pointed out to his student the fascination of my strange and interesting case .
I apparently now have SPMS and yes my walking is declining ..but all I can say is I lived well and happily on the “ borrowed time”and it lasted for a long time!

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