MS in all its glory

Nigel Fairservice wrote: »

I have had 4 chest infections this year. I'm also asthmatic. I've had a lot of upheaval this year as well. I changed jobs, moved in with gf in a new town and my mother passed away. I have been sicker (generally speaking) more this year than last but I put it down to having a repressed immune system. On Tecfidera for the MS but I think MS medications repress our immune systems.

Thanks for the reply, and I'm so sorry for your loss!
As for the tecfidera I'm a bit disappointed to hear that, I had been hoping to switch to that one as I thought it mightn't have the same effect.

Honestly I was so happy with Gilenya until this year that I was kind of hoping someone would post a reply who's been on it and found it fine, so that way I could put my rubbish health this year down to something else.

Thanks Adam, I'm planning to have a chat with the docs in November when I go in before I decide anything.

Diagnosed 18 months. Doing well. Fatigue is my biggest complaint with a little drop in cognitive functions, mumbling my words etc. I’ve a few little balance problems but nothing major,,,,,,, just wondering is it worth while getting referred to a physio?? Wonder could it halt the progress of my MS

Also is there anyone on this that doesn’t thing about their MS at least once or twice a day ??

tinofapples wrote: »

Hi Adam, you could check out your local MS society if there is one nearby, they'll have a physio who will be willing to see you I'd imagine. Where are you located ? You and I seem to have been diagnosed around the same time, April 2018 for me.

Kerry lad here. Diagnosed in June 18.

cjmc wrote: »

Not feeling great this morning. Temp 38.1c and can hardly walk. I've been coming down with a bug these last few days so purring it down to that.

Yip. Viruses play havoc with the MS, picked up a nasty bug abroad last month, there was two days straight when I couldn’t walk by myself, my balance was so bad

I agree with byhook, I got my diagnosis in Feb 2015, but in hindsight was dealing with various "silly" challenges for a while before.

I have been working with physios on and off for 20+ years (mostly strength & conditioning, and rehab following sports related injuries), but starting working with a Neuro-Physio about a year ago, (after having to push my Neurologist quite hard for a referral) and while it would be wrong to call her a "miracle worker" the work we do, in my opinion, definitely helps.

We are all different and will each respond to different treatments or stimuli differently, (and perhaps it's denial / placebo effect on my part) but in my case I believe I have seen improvements in balance and ocular function and reactions, which have allowed me resume my fitness regime, albeit not quite with the same vigor as before. I put that down to my Physio's understanding of the complex workings of the central nervous system(s) and how we "fire" our muscles etc and the "technically difficult" work we have done as opposed the "hard" work done with a more traditional Physio where muscle strength and endurance etc tends be the focus; if that makes sense.

Either way, in my uneducated opinion, working with a Neuro Physio can't do any harm (that being said I am not a medical professional / expert so my experience is precisely that "my experience") - Either way good luck

byhookorbycrook wrote: »

If seriously recommend Tysabri - why fool around with less effective drugs !

Not everyone can have Tysabri. I'm JC+ and my neuro wants to hold Tysabri in reserve as a last resort if other drugs didn't work. Luckily Gilenya has been very good for my MS. It's only marginally less effective than Tysabri anyway.

sqooka wrote: »

Honestly I was so happy with Gilenya until this year that I was kind of hoping someone would post a reply who's been on it and found it fine, so that way I could put my rubbish health this year down to something else.

I'm on it over 5 years now, no side effects and general good health. Yes you do get sick maybe a little more often, or it takes longer to get over a bug, that will happen with fewer white blood cells in your bloodstream, but you may have just been unlucky, and the other factors may also have had a big impact. I'd give it another while yet before you make a final decision.

I've never had the MS fatigue but have been incredibly tired in the evenings this last few days - bed before 10pm, which is unheard of for me. One year old not sleeping well hasn't helped either. Literally cannot keep my eyes open after dinner.

I do 12 hour shifts The last four or so hours are torturous, there was a time when I used to face into a 4 mile walk afterwards. Now I’m straight into bed

Salmotrutta wrote: »

Same here, we have a two and a half year old as well, so everyone is tired. My wife is the same, but I try to remember that she's tired too a lot of the time, and when your general health is so good with no relapses that people can forget you have MS, that's a good thing. Plus there's the feeling that if you mention MS it just sounds like an excuse.

Absolutely. I relapsed in pregnancy and 6 days after the little one was born and my husband was great with doing all the night feeds but now I am back on the meds and improving, the MS has gone out the window in his mind! It's my fault for just sucking it up!

Lollipops23 wrote: »

Yesterday Lloyd's Online Doc randomly decided they could no longer prescribe me the contraceptive pill after 4 years.

Their reason? If I get pregnant taking Gilenya it could cause defects in the foetus.

Which is why I take the pill.


Go figure.

Did you explain what the contraceptive pill does??? Idiots.

Carrie6OD wrote: »

Also I’m thoroughly sick to the back teeth of strangers asking me why I’m “limping”. I’m replying by saying, that’s the just the way I walk, which is the truth, but it’s such an intrusive question for me. 2 strangers said it this morning and that really set my day off. Does anyone else experience this?

When someone sees an apparently healthy (young?) person limping the assumption is that they had an accident or a mishap playing sports so to them asking about it is an icebreaker, like talking about the weather.
Anybody who has ever had a limb in plaster will have got the same thing.
I know that doesn’t make it any easier for you and we should all be more sensitive but there are advantages to living in a society where people do take an interest in each other.

Carrie6OD wrote: »

But I’m not limping! It’s just my MS gait may be a bit off. At that moment when I’m trying my absolute best to have a steady gait and to get my kids to school and someone stops to ask me oh why are you limping, it has a really negative impact on me. I would never ask a stranger a personal question. What is the reason for the question? They do not care for me, it is to satisfy their own curiosity. I would rather talk about the weather.

I get that. Imagine walking up to a person with acne asking what's up with their face! My limp/ foot drop makes me really self conscious. I only suffer after I have walked for a while so halfway around a park/ Tesco it will start. I often wonder what people think seeing me bounce out of my car in a disabled spot and have to practically lift my leg with my hand to get back into the car a half hour later.