MS in all its glory

Salmotrutta

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.

Lollipops23

My fatigue has been way worse in the last week or two. Can't tell if it's down to the change in seasons? Temp doesn't usually affect me too much.

Salmotrutta

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.

adam88

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

Loveinapril wrote: »

The little people don't help! I have a two year old and a three month old and it is the toddler who has me exhausted trying to keep me up.i think my husband forgets I have MS! When I complain of being tired he mentions my early nights. Sometimes I want to go to bed with the toddler at 7pm!

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.

Lollipops23

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.

cj maxx

Lollipops23 wrote: »

My fatigue has been way worse in the last week or two. Can't tell if it's down to the change in seasons? Temp doesn't usually affect me too much.

The change in season, an ongoing cold / virus has shot my fatigue through the roof these last few weeks.

byhookorbycrook

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.

Seriously?What a stupid idea.

Carrie6OD

Does anybody’s MS get worse when they have a head cold? I’ve had the flu jab so it’s not flu but I have a bad cold and my walking has just gone so bad.

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?

echo beach

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

echo beach wrote: »

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.

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.

Carrie6OD

Loveinapril wrote: »

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.

Yes exactly! Thank you for getting my point! It’s nobody’s business. I’m the same with the walking although at the moment every step is heavy. It’s very worrying and I have to really be careful with every step. I might feel like I’m doing amazingly well and then someone piped up “what have you done to yourself”! And then I’m set right back.

cj maxx

Carrie6OD wrote: »

Does anybody’s MS get worse when they have a head cold? I’ve had the flu jab so it’s not flu but I have a bad cold and my walking has just gone so bad.

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?

Re symptoms getting worse with a cold my nurse said when you get sick you can have a pseudo relapse. Symptoms get worse but it's not a flare up. Oh the Joy's.
Also there's a granny at my kids school that always asks me did I hurt my leg / were you on the beer last night ?
No I didn't and I wasn't. Theres a reason the school gave me a pass to drive in !!!

Carrie6OD

cjmc wrote: »

Re symptoms getting worse with a cold my nurse said when you get sick you can have a pseudo relapse. Symptoms get worse but it's not a flare up. Oh the Joy's.
Also there's a granny at my kids school that always asks me did I hurt my leg / were you on the beer last night ?
No I didn't and I wasn't. Theres a reason the school gave me a pass to drive in !!!

Thanks for letting me know that. I have PPMS so no relapses but I’m hoping walking will improve when cold is over.

Ah those questions and those people’s faux concern!

byhookorbycrook

I've been stopped twice by a guy who told me he could cure my "sore hip" through prayer. I met him recently again and turned my " cross teacher" face on him so he took the hint.

I've a tendency to fall over if I get too tired and people rush to help.I know it's concern (in most cases)but I do find it embarrassing. I park in the blue badge space at work and a childminder took me to task for parking there. Now, if you ever wanted to see someone hoping the ground would swallow them...

cj maxx

Often , when parking in the disabled spot at shopping centres I get dirty looks from oil wans waving their badges at me. Bloody annoys the hell out of me

byhookorbycrook

Our local shops have a whole herd of "auld wans" who feel age entitles them to a badge space.This as they come in from a round of golf, pilates etc. And yes, I get the dirty looks, but in a way, at least the "lookers" are kind of defending the spaces, instead of parking in them.
I've been known to park behind of (and block the exit ) the occasional yummy mummy who is " only going to be a minute." I've been followed by someone into a shop but I told them, I'd only be a minute. I think she got the message

Lollipops23

Had my MRI yesterday- feckin contrast dye drip leaked into my arm outside my vein, so that was very painful.

I've been pretty rundown lately, 3 colds in 6 weeks and lots of mouth ulcers. Hoping it's not a sign of a relapse.

adam88

Lollipops23 wrote: »

Had my MRI yesterday- feckin contrast dye drip leaked into my arm outside my vein, so that was very painful.

I've been pretty rundown lately, 3 colds in 6 weeks and lots of mouth ulcers. Hoping it's not a sign of a relapse.

I suffer so so bad with mouth ulcers for about the last 15 years. Absolute torture. Nothing for the only to suck it up and let time heal........... on the plus side if you get iv steroids they clear up with an hour

Lollipops23

adam88 wrote: »

I suffer so so bad with mouth ulcers for about the last 15 years. Absolute torture. Nothing for the only to suck it up and let time heal........... on the plus side if you get iv steroids they clear up with an hour

Yeah pretty sure it's all down to the Gilenya- I was sick constantly the first 18 months I was taking them. Just gonna get some B12 and garlic pills, hopefully they'll keep things at bay!!

byhookorbycrook

adam88 wrote: »

I suffer so so bad with mouth ulcers for about the last 15 years. Absolute torture. Nothing for the only to suck it up and let time heal........... on the plus side if you get iv steroids they clear up with an hour

Corsodyl mouth wash is your friend.

Little My

This is most probably covered already but has anyone any advice about getting a blue badge parking permit when the main problem is fatigue? I am changing jobs shortly and am concerned that if I don't get parked close to my new place of work I will find that walking the distance to the car park will make it very hard for me.

byhookorbycrook

Little My, PM-ing you.

tinofapples

byhookorbycrook wrote: »

Little My, PM-ing you.

Would you mind filling me in as well, please ?

Gremlinertia

Reminder, offering/seeking private messages is against the charter here

adam88

Little My wrote: »

This is most probably covered already but has anyone any advice about getting a blue badge parking permit when the main problem is fatigue? I am changing jobs shortly and am concerned that if I don't get parked close to my new place of work I will find that walking the distance to the car park will make it very hard for me.

Plus one on this. If a dr assessed me I’d be grand but long walks in shopping centre car parks leaves me drained

Carrie6OD

adam88 wrote: »

Plus one on this. If a dr assessed me I’d be grand but long walks in shopping centre car parks leaves me drained

Me too. The woman going into Tesco is not the same woman coming out. Really thinking about applying for blue badge but feel like for me it’s admitting defeat a bit...

tinofapples

byhookorbycrook wrote: »

Little My, PM-ing you.

Perhaps you could share on the thread, to keep everyone happy :-)

adam88

Last night of a weeks cruise tonight, early starts and drinks till the early hours. I’m absolutely wrecked, not a hope of going into work Monday if was hadn’t the day off. Suppose it’s a sign of things to come.
Diagnosed Jun 18, Gilenya since sept 18 but last few months have not been good. To be honest I’m more scared now than getting the news close to 18months ago

byhookorbycrook

Gremlinertia wrote: »

Reminder, offering/seeking private messages is against the charter here

Sincere apologies. I did'nt realize that.