MS in all its glory

JenniFurr

Thanks for the reply. I've read some of the post you mentioned after I posted this thread. I think my anxiety levels were getting a bit high and I just needed to get some of my issues out in some form before really reading through past threads. Sorry about that! It is a really good thread though. I vary from thinking this isn't a bad group of people to potentially be in to "oh crap I think I have that symptom!"

I actually went to my GP after posting to get some advice. He seemed a bit shocked by my story and wrote a letter to bring straight to hospital. I met with a nurse who checked my vision improvement and she laughed at the fact that my legs were visibly shaking because she thought I was nervous (I hadn't even noticed! And I wasn't nervous.) I felt I was making some progress with being listened to and was given decent-ish painkillers for the stabbing pains I was experiencing. The doctor I saw was very surprised that I wasn't given IV steroids even if I just had ON. BUT I was then sent to the consultant opthamologist that discharged me to have a conversation about steroids. He was not happy to see me and seemed a bit miffed that I was back. I was quickly dismissed and started to get a little misty eyed. I'm fairly certain I saw him roll his eyes at that. I just left as I'd been in hospital for the whole day and didn't have the energy to start a fight. I tried to get referral letter for an MRI at the local private clinic but he made some excuses.

Anyway I know this is could have be put into the other thread and I don't expects any replies. I think I'm just picking a poor place to document what's happening. I think I'll have to start a diary! Anyway thanks for the reply

eimsRV

Hi Jenni

Can you try another hospital? Are you in Dublin?

Also my gp was able to refer me for an mri and then when I got the results of that I was processed through a&e quickly and admitted for necessary steroids and tests including lumbar puncture. I attended Beaumont.

Hope you get answers

JenniFurr

Sadly I don't live in Dublin. I'm in Waterford. Even though this opthamologist is not particularly great, University Hospital Waterford is doing it's best with its budget so I can't blame them for taking a long time for scans.

I tried to ask the on call doc at my GP for a MRI referral but he said he wouldn't have enough info to give them but he'd look into it. There's a local private mini hospital nearby I want to check out. They can do an MRI fairly quickly so I might seek them out independently. They wouldn't have a big neurology department though so they scans would have be forwarded on to UHW. I do know there was a bit of worry from UHW's neurology team as they did attempt to do a lumbar puncture unsuccessfully the day before I was forcefully discharged... so I guess with the right scans they'd be more thorough than the eejit I've been dealing with.

kieranfitz

eimsRV wrote: »

Kieran have you applied for the long term illness card? It's not means tested and covers all MS related medication available from hse. Mine only took a few weeks to be processed

I dont even know how to go about applying. Trying to get a medical card is proving hard enough. I'm applying for disability too but I'm probably not going to get it cause I was out of the country for the whole of 2013.

FluffyAngel

theres a clinic in Cork that can do scans with a very short waiting times(days)
the cost can be low ,i got a scan done recentlly for 200 euro but as with most things it depends on what needs to be done ..

JenniFurr

kieranfitz wrote: »

I dont even know how to go about applying. Trying to get a medical card is proving hard enough. I'm applying for disability too but I'm probably not going to get it cause I was out of the country for the whole of 2013.

You can download the illness benefit form from the following address

http://www.hse.ie/eng/services/list/1/schemes/lti/ltiform.pdf

You should also still be entitled to DA and the medical card regardless of the fact you weren't in the country in 2013. I think the only residency part that you have to prove is that you are living in Ireland now.

They can make getting what you are entitled to more difficult than it needs to be by rejecting your first application but they do this with everyone now and you might have to appeal. I know someone who's legally blind that had to appeal the first decision on DA and actually have to ring the HSE to tell them she was blind before they read her medical card form correctly and sent it out.

The key is to be persistent which sounds easier than it is. You could try to get in touch with a community welfare officer who might be able to help. You could look into getting supplementary welfare allowance in the meantime with the CWO if you apply for DA too.

embee

My legs are extremely numb and weak this past few days. Not sure if I xan have steroids as I've,had them three times in a year. Am on Tecfidera and it doesn't seen to be helping me at all, I was on Copaxone but developed anaphylactic reaction to it after being on it for eight months. Pretty sick of limping and wobbling around the place..... Are any of the meds ye are on actually helping you? Feel worse now than when I was initially diagnosed 15 months ago.pretty sick of MS to be honest, it's such a giant pain in the backside.

ash23

Hi Embee,

Sorry to hear you're struggling at the moment

I'm on Gilenya for nearly three years now after Copaxone didn't work. It's been great in terms of no relapses and no new lesions.

Unfortunately it seems to be adversley affecting my liver. I have monthly blood tests as my liver function is being affected and a couple of times it's been so bad they've thought about taking me off it but so far it's settled back down and I've been able to stay on it. I'm back at the end of the month for a repeat blood test and if it's high again I've to start looking at other options.

So while I know Gilenya hasn't been perfect for me in terms of the liver issue, I just thought I'd let you know that it's pretty effective.

embee

ash23 wrote: »

Hi Embee,

Sorry to hear you're struggling at the moment

I'm on Gilenya for nearly three years now after Copaxone didn't work. It's been great in terms of no relapses and no new lesions.

Unfortunately it seems to be adversley affecting my liver. I have monthly blood tests as my liver function is being affected and a couple of times it's been so bad they've thought about taking me off it but so far it's settled back down and I've been able to stay on it. I'm back at the end of the month for a repeat blood test and if it's high again I've to start looking at other options.

So while I know Gilenya hasn't been perfect for me in terms of the liver issue, I just thought I'd let you know that it's pretty effective.

I am going for yet more steroids on Monday, 4th time in 15 months. Am cynical that it'll do anything though, have been symptomatic since I got the last dose.

byhookorbycrook

Embee are you relapsing and would you consider Tysabri?It's the most effective drug right now, though Lemtrada has had some good results to and seems to work better on the more recently diagnosed.

Sunny Dayz

ash23 wrote: »

Hi Embee,

Sorry to hear you're struggling at the moment

I'm on Gilenya for nearly three years now after Copaxone didn't work. It's been great in terms of no relapses and no new lesions.

Unfortunately it seems to be adversley affecting my liver. I have monthly blood tests as my liver function is being affected and a couple of times it's been so bad they've thought about taking me off it but so far it's settled back down and I've been able to stay on it. I'm back at the end of the month for a repeat blood test and if it's high again I've to start looking at other options.

So while I know Gilenya hasn't been perfect for me in terms of the liver issue, I just thought I'd let you know that it's pretty effective.

Hi Ash23 - is the adverse effect on your liver one of the side affects of Gilenya? My husband is due to start on it next month and all they said to him was that it can affect your heart and that's why they have to monitor him on the first day. He doesn't have any heart complaints btw.

ash23

Sunny Dayz wrote: »

Hi Ash23 - is the adverse effect on your liver one of the side affects of Gilenya? My husband is due to start on it next month and all they said to him was that it can affect your heart and that's why they have to monitor him on the first day. He doesn't have any heart complaints btw.

I've always had high liver function tests but a cause was never established but Gilenya drove them up to borderline dangerous levels so it probably wouldn't be the case for everyone. I just don't seem to tolerate it very well.

The first dose lowers the heart rate but just the first dose. So he'll have monitoring before, during and after taking his first dose. I know my own heart rate went down to 50bpm and then back up to normal within the 8 hour monitoring so I wouldn't worry about it too much.

Is lemtrada approved in Ireland byhookorbycrook?

I'm considering asking about it. Tecfidera also has an impact on the liver so I probably would have the same issues and I'm not keen on the idea of Tysabri. Can't really financially afford a day off every month plus the cost of travel.
I didn't know Lemtrada had actually been given the green light. I must mention it at my appointment next month.

embee

Just had the last three days in hospital n yet more steroids. Still have extreme numbness in the hands but my balance and the leg n,bless has subsided a bit. Had a repeat ,MRI yesterday and got a voicemail From my consultant to discuss the MRI ....... The thinking is possibly Ming on to Tysabri. Am nearly afraid to talk to her in the morning.

byhookorbycrook

Embee, are you worried about Tysabri?

embee

Yeah I am a bit, feels like I have progressed mad quickly to this poiny, am only diagnosed 15 months

byhookorbycrook

Look at it this way, Tysabri is currently the most effective MS DMD there is. My biggest regret is that I couldn't get it sooner. I would also ask your neuro about Lemtrada, it seems to work best for those recently diagnosed.

That said, like Tysabri , Lemtrada is a serious drug and even though it's been on the market as Campath for leukemia for a long time , it does not have the same amount of data for MS that Tysabri does.

There are closed groups for both Lemtrada and Tysabri on FB where you can join and ask others about their experiences without the neighbours or nosy Auntie Nora (who knew she was on FB ?!!) knowing all your business.
I can pm you links to both if you wish.

embee

Got a call frm Beaumont, comparisons of MRI's n April and two days ago show significant new activity and new active lesions. Tecfidera not working so I'm going n the waiting list for Tysabri. There's no funding for lemtrada so Tysabri is the next plan. Am feeling very down, feel like this is engulfing me very quickly

byhookorbycrook

Why is there no funding for Lemtrada?I know a girl who got it last week.
I can understand why you are down, but hopefully Tysabri will do the job. I am relapse free since starting it in Jan 2009 and even though my risk of PML is now quite high, I will stay on it as long as I am left.
It's a pity in a way that Tysabri isn't used as a 1st line DMD when it has been so successful.

embee

byhookorbycrook wrote: »

Why is there no funding for Lemtrada?I know a girl who got it last week.
I can understand why you are down, but hopefully Tysabri will do the job. I am relapse free since starting it in Jan 2009 and even though my risk of PML is now quite high, I will stay on it as long as I am left.
It's a pity in a way that Tysabri isn't used as a 1st line DMD when it has been so successful.

Really. That makes me feel a bit more hopeful, great you are relapse free for 6 years! I've had four relapses in 15 months so the idea of getting longer remissions is very appealing. Dr Costelloe said there's no funding for lemtrada n the Beaumont at present. Trying to be as positive as I can be, it just knocked me for six a wee bit.

byhookorbycrook

Pre Tysabri I relapsed about once a year. The autumn before I started Ty I had 2 relapses in three months (thanks Avonex, NOT) Most of my relapses hit my left leg, but the last one took out my right "good" leg. Hence, I wish I had managed to get TY earlier.

Re funding for Lemtrada,if your neuro thinks it is best for you, it might be possible to demand it!!!

Salmotrutta

embee wrote: »

Got a call frm Beaumont, comparisons of MRI's n April and two days ago show significant new activity and new active lesions. Tecfidera not working so I'm going n the waiting list for Tysabri. There's no funding for lemtrada so Tysabri is the next plan. Am feeling very down, feel like this is engulfing me very quickly

Sorry to hear that embee. I'm another one on Gilenya, think you should consider that too if you can't get Ty straight away. No new lesions or activity since I went on it nearly a year ago, and know of several people with no relapses for several years now on it. May not be quite as affective as Tysabri but definitely seems to work for highly active MS.

byhookorbycrook wrote: »

Why is there no funding for Lemtrada?I know a girl who got it last week.
I can understand why you are down, but hopefully Tysabri will do the job. I am relapse free since starting it in Jan 2009 and even though my risk of PML is now quite high, I will stay on it as long as I am left.
It's a pity in a way that Tysabri isn't used as a 1st line DMD when it has been so successful.

Is the policy on first line drugs before Ty/Gilenya still firm? I was put on Gilenya straight away, my neuro said my MS was quite active, and the research was suggesting putting people straight onto Ty/Gilenya straight away as a better strategy. Unfortunately I was JCV+ so Ty was kinda ruled out.

ash23 wrote: »

I've always had high liver function tests but a cause was never established but Gilenya drove them up to borderline dangerous levels so it probably wouldn't be the case for everyone. I just don't seem to tolerate it very well.

Ash my better half works in a hospital lab and said that while people on Gilenya sometimes get high liver function tests, that they seem to be unaffected by this - normally people with high reading are symptomatic - liver affected, tenderness/pain, but this doesn't seem to happen with Gilenya. While a high reading is normally cause for concern, she doesn't think the docs consider it as serious when Gilenya is the reason.

ash23

Thanks for that. I think the problem is that mine are consistently very very high so I've no symptoms but they are worried that long term I'll end up damaging my liver long term.
As my neuro put it, we don't want to eliminate one problem only to end up causing another.
It's a shame because Gilenya works so well for me other than that.

byhookorbycrook

Salmontrutta, I am JC+ but still on Tysabri, do you know what your titre level is for JC?

Salmotrutta

byhookorbycrook wrote: »

Salmontrutta, I am JC+ but still on Tysabri, do you know what your titre level is for JC?

I can't remember the exact figure but it was quite high (possibly around 3 but the memory is hazy) so the neuro suggested Gilenya, and to keep Tysabri in reserve in case I need it at a later stage for a year or two - if the MS was very active he said they might put me on Ty for a period to try get it under control. Thankfully the Gilenya seems to be working well so far.

kieranfitz

Good news everyone, my medical card finally came through last week. Now I need to get my DA forms sorted and try and get the hospital off my back about money for the 2 weeks I was in there.

embee

Got a call from my neurologist - the funding for my Tysabri has been approved in my local hospital (which is also my place of work) and I am starting it on August 18th. Am nervous and excited, really hope this is what works for me, hard not to be cynical as Copaxone and Tecfidera haven't worked, but am trying to be positive about it all. Can't cone soon enough, have no sensation or strength in my right arm.

Blinder

embee wrote: »

Got a call from my neurologist - the funding for my Tysabri has been approved in my local hospital .

That's great news. Tysari has the highest reduction of relapse rate. really hope it's good for you

Airportrambler

Hi to all. I has been diagnosed in June after second attack (or God knows how to call it). So I am on Plegridy ( third
ingection and gives me slipless night). I would like to ask if anybody use this treatment and what do you think about it? It gives me depression so the first part of the day I completely miserable and useless, but the rest of the time I am rather ok. Mornings always hell. Any thoughts on this?
Thanks

byhookorbycrook

Airportrambler wrote: »

Hi to all. I has been diagnosed in June after second attack (or God knows how to call it). So I am on Plegridy ( third
ingection and gives me slipless night). I would like to ask if anybody use this treatment and what do you think about it? It gives me depression so the first part of the day I completely miserable and useless, but the rest of the time I am rather ok. Mornings always hell. Any thoughts on this?
Thanks

When I was on the interferons, I found if I took paracetemol about an hour beforehand and then injected about 1 hour before bed, I slept through the worst. It will take a while to get used to any med, so hopefully it will settle down for you.

Embee, delighted for you, make sure to drink loads of water, before, during and after and plan an easy day after. Water will help ward off possible headaches and make it easier for them to find a vein.

I was trying to be very organised so peed out every last drop of pee I had before going to the ward, only to be handed a sample bottle when I landed! :D:D

Airportrambler

I have / other questions : 1. what to do eith extremely heavy legs? It is not a tiredness, it is a heavy load on the legs. I am on gym every day and eat healthy.
2. how long goes it take to stop constantly thinking about your ilness? Or it is forever ? All days since morning I think about it while I work or clean house or talking with friends, walking before I go to bed. I am afraid I am getting mad.