MS in all its glory

Carrie6OD · 31-10-2019 10:03am

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.

Loveinapril · 31-10-2019 10:23am

Yeah there is that reminder that you look different then. Sensory issues are all well and good but it can be embarrassing to limp or trip over nothing, let alone having someone point it out.

cj maxx · 31-10-2019 11:50am

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 · 31-10-2019 11:56am

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 · 01-11-2019 8:42pm

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...

Loveinapril · 01-11-2019 10:33pm

byhookorbycrook wrote: »

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...

I am generally a nice person but I am beyond p!ssed off at the amount of dirty looks and comments I get when I use a disabled spot. Last month I was putting my screaming newborn and her 2 year old brother into a double buggy I had just put up, sweating all over the place when an oul one came over abruptly asking had I "got a pass". I couldn't hear her (over the screamy baby!) so she asked a lady who just happened to be passing by. When she asked again I said I did, and the passer by sympathised with me, saying how rude she was. It was the first time I had ever had someone be NICE to me after receiving comments/ abuse about using the spot. I once had a parking warden question me about it before I had even parked my car!

cj maxx · 02-11-2019 10:23pm

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 · 03-11-2019 10:16pm

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 · 05-11-2019 4:01pm

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 · 05-11-2019 6:19pm

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 · 06-11-2019 9:51am

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 · 06-11-2019 9:56pm

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 · 08-11-2019 12:41pm

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 · 08-11-2019 6:41pm

Little My, PM-ing you.

tinofapples · 08-11-2019 8:36pm

byhookorbycrook wrote: »

Little My, PM-ing you.

Would you mind filling me in as well, please ?

Gremlinertia · 08-11-2019 9:55pm

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

adam88 · 09-11-2019 12:30pm

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 · 09-11-2019 1:13pm

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 · 09-11-2019 9:53pm

byhookorbycrook wrote: »

Little My, PM-ing you.

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

adam88 · 10-11-2019 12:15am

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 · 10-11-2019 8:27pm

Gremlinertia wrote: »

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

Sincere apologies. I did'nt realize that.

byhookorbycrook · 10-11-2019 8:29pm

tinofapples wrote: »

Would you mind filling me in as well, please ?

Your neuro or gp should be able to support your application for the badge.Go with whoever is more sympathetic, sometimes GPs aren't fully aware of the extent of MS needs.

eimsRV · 11-11-2019 11:31pm

byhookorbycrook wrote: »

Your neuro or gp should be able to support your application for the badge.Go with whoever is more sympathetic, sometimes GPs aren't fully aware of the extent of MS needs.

I've been thinking about discussing with my GP about applying also, she is understanding. I had a relapse in May, I'm back to work about 70% of the time now. But still finding it difficult to resume normal activities like shopping, going out with the kids, etc. due to fatigue.

Carrie6OD · 13-11-2019 1:01pm

Has anyone ever changed consultant? It took me ages to get into the public system after being originally diagnosed privately. I want to stay in the public system of course but I just feel I’m getting nowhere with my consultant and the team there. I’m not being difficult I just don’t think they are hearing me. I would love a different take on my MS and am wondering has anyone swopped to a different neurologist in a different hospital? TIA

adam88 · 14-11-2019 12:59am

Carrie6OD wrote: »

Has anyone ever changed consultant? It took me ages to get into the public system after being originally diagnosed privately. I want to stay in the public system of course but I just feel I’m getting nowhere with my consultant and the team there. I’m not being difficult I just don’t think they are hearing me. I would love a different take on my MS and am wondering has anyone swopped to a different neurologist in a different hospital? TIA

I got my neuro cause she was the neuro on call the day I got diagnosed,,,,,, she has gone now and I’ve a new neuro,,,,, don’t even know if it’s male or female. What are you to expect from a neuro????

I just contact the ms nurses when I need a new script sent out

Carrie6OD · 14-11-2019 9:49pm

adam88 wrote: »

I got my neuro cause she was the neuro on call the day I got diagnosed,,,,,, she has gone now and I’ve a new neuro,,,,, don’t even know if it’s male or female. What are you to expect from a neuro????

I just contact the ms nurses when I need a new script sent out

I would like a Neurologist who listened to me

byhookorbycrook · 14-11-2019 10:00pm

Carrie6OD wrote: »

I would like a Neurologist who listened to me

I’m tremendously lucky in that regard . Our Neuro is super is why I drive 4.5 hours each way to her each month.

adam88 · 15-11-2019 12:34am

byhookorbycrook wrote: »

I’m tremendously lucky in that regard . Our Neuro is super is why I drive 4.5 hours each way to her each month.

She based in the south???

Is there a reason why you attend so often ??

I haven’t been seen in over a year

Carrie6OD · 16-11-2019 11:46pm

byhookorbycrook wrote: »

I’m tremendously lucky in that regard . Our Neuro is super is why I drive 4.5 hours each way to her each month.

I would happily travel to a neuro if I was happy with them. Took me two hours travelling to mine last week and I was very unhappy with how I was treated.

tinofapples · 17-11-2019 12:45am

byhookorbycrook wrote: »

I’m tremendously lucky in that regard . Our Neuro is super is why I drive 4.5 hours each way to her each month.

That's some trek for you, you must be floored after that day out, I know I would be .

byhookorbycrook · 17-11-2019 7:47pm

tinofapples wrote: »

That's some trek for you, you must be floored after that day out, I know I would be .

I stay in a local hotel on the Sat. night, so makes it manageable.

adam88 · 18-11-2019 12:23pm

byhookorbycrook wrote: »

I stay in a local hotel on the Sat. night, so makes it manageable.

Seeing a specialist on a Sunday ????

Is it south of the country by any chance ??

cj maxx · 19-11-2019 11:36pm

Spot light BBC1 at 1045pm about Dr Watt , consultant neuro who has been struck off

Carrie6OD · 21-11-2019 12:07pm

Is anyone here on ocrevus/ ocrelizumab? I think I’m going to start it and would love to hear stories from people who are already on it. TIA

byhookorbycrook · 21-11-2019 5:53pm

adam88 wrote: »

Seeing a specialist on a Sunday ????

Is it south of the country by any chance ??

Yes, she takes a day ward to do infusions on a Sunday. This also means, we know the dates for the full year well ahead of the time.

byhookorbycrook · 21-11-2019 5:54pm

Carrie6OD wrote: »

Is anyone here on ocrevus/ ocrelizumab? I think I’m going to start it and would love to hear stories from people who are already on it. TIA

Is it available here now?People in ours are on Ritux (a close cousin) waiting for Ocrevus approval.

adam88 · 21-11-2019 6:30pm

byhookorbycrook wrote: »

Yes, she takes a day ward to do infusions on a Sunday. This also means, we know the dates for the full year well ahead of the time.

Is that in the private hospital???? I live in that town and my dr is in Cork, I’m not sure if I should move over. Going down to cork is a bit of a balls to see specialist

byhookorbycrook · 21-11-2019 8:16pm

Yes, though she works in the General too, but Tysabri only done in the other one.

Carrie6OD · 21-11-2019 8:58pm

byhookorbycrook wrote: »

Is it available here now?People in ours are on Ritux (a close cousin) waiting for Ocrevus approval.

I was at an MSIreland event and some people were on it. I’m hoping it’s a distant cousin to rituximab as I had allergic reaction to that...

adam88 · 21-11-2019 11:52pm

byhookorbycrook wrote: »

Yes, though she works in the General too, but Tysabri only done in the other one.

She’s meant to be good. Atm I don’t really have much need to be constantly seeing a specialist. Between two minds to see my own one in cork the odd time I’m called down

byhookorbycrook · 24-11-2019 9:02pm

She's at the infusions each month, if we need to talk with her. Otherwise it's a quick check if we have any issues and a bit of a chat!

tinofapples · 03-12-2019 8:57pm

Anyone interested :

Medical cannabis ‘will change lives’, advocates say

https://www.irishexaminer.com/breakingnews/ireland/medical-cannabis-will-change-lives-advocates-say-968003.html

https://www.gov.ie/en/publication/90ece9-medical-cannabis-access-programme/

Fourwinds · 03-12-2019 9:15pm

If it helps then I for one would say yes. I am back in for an infusion tomorrow morning and also another MRI I shall Ask my Neuro and ms nurse for their thoughts on it

byhookorbycrook · 03-12-2019 10:15pm

I presume you couldn't drive if you take one of those cannabis products?

Nigel Fairservice · 03-12-2019 10:20pm

byhookorbycrook wrote: »

I presume you couldn't drive if you take one of those cannabis products?

I think I read in the Irish Times that you would fail a roadside drug driving test (the article was published around the time roadside drug testing was introduced).

Fourwinds · 03-12-2019 11:08pm

Nigel Fairservice wrote: »

I think I read in the Irish Times that you would fail a roadside drug driving test (the article was published around the time roadside drug testing was introduced).

That would certainly change things. I thought they would be low thc.

byhookorbycrook · 05-12-2019 7:42pm

Fourwinds wrote: »

That would certainly change things. I thought they would be low thc.

I absolutely agree. Baclofen has proven to be as effective for the majority of people who have spacticity. But those who don't respond to it, need some alternative to be able to get through.

Lollipops23 · 06-12-2019 11:36am

My MRI results came back and they said, while there's no new lesions or lesion activity, one old one looks bigger than last year.

Now, the thing is- I used a different MRI clinic this year. I hated the one I've used over the last few times, so switched provider.

The nurse said that's most likely the reason- a different machine than usual. Fingers crossed!

byhookorbycrook · 09-12-2019 9:27pm

A newer/more powerful would pick up more, of course. Hope that's the reason.

Lollipops23 · 11-12-2019 12:53pm

They discussed my MRI at conference on Tues and they're happy with it. Relief!!

Also spoke to the nurse when she called to tell me, told her how sick I've been over the last few months (back to back colds since summer, as well as recurring mouth ulcers). She thinks my lymphocytes may have dropped a bit low, so has ordered more bloods (joy!!) If they're below .2 they'll need to take me off the Gilenya for a few weeks and let them climb back up.

MS in all its glory

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