MS in all its glory

Salmotrutta · 24-04-2015 12:34pm

Sunny Dayz wrote: »

My husband has been recommended the treatment Gilenya by his neuro-consultant. Any Boardsies on this and how do you find it?

I'm on Gilenya about 8 months now. First treatment for me, I was put straight on it without having to go through any of the injectable drugs first. It's been great so far, zero side effects whatsoever. Have had a couple of heavy colds over the winter but nothing too severe. My last MRI showed no new lesions and actually reduced size of existing lesions - due another one soon so hopefully that continues. I realise mine isn't a long term experience so good to get other views on it too.

Closov wrote: »

I honestly couldn't say, I didn't even look into this deadline until you posted, and I see there is a lot of confusion about it. Something maybe we should all be taking a close look at.

What benefits has having VHI given you for dealing with your illness?

I found it was no help at all and dropped it straight away - I'm still very disgusted with all the money I gave them over the years only to find they were of no benefit during and after my diagnoses.

Once I went public I couldn't believe how much better I was treated and how much better access I now have to medicines (like getting Tedfidera early) and services (like MRIs).

But I appreciate someone could have the opposite experience. Can you say, for sure, that having VHI has been better for you? and what is better about it? Isn't Tysrabi available on the public scheme too?

I'm with another healthcare insurer but same principle applies. I wouldn't be without it. I've gone private for my care and have never had to wait more than a week or two for MRIs, have been admitted immediately whenever I needed steroids, and my neuro is always available in case I need him. From speaking to people in the public system, they wait much longer for MRIs and appointments. Treatment wise it's probably much the same as the LTI scheme covers medication, but for peace of mind and knowing I can be seen straight away if I have a relapse I wouldn't dream of dropping mine.

byhookorbycrook · 24-04-2015 4:47pm

Without VHI I would not be getting Tysabri, simple as. Our infusion centre only has a small number of patients and we have our neuro there every single month. Contrast this to a public hospital I know where the number of patients is capped, so no -one gets Tysabri in the area unless someone else comes off it. Because I am JC+ we get MRi-ed every 3 months, the public centre I am thinking off has left patients go 18 months.

Two years ago, my left leg gave out and I though I was relapsing. Because of VHI I could go to where my neuro is based, she organised an MRI in 2 days which showed a pinched nerve, straight into hospital, epidural in 24 hours. For me it is essential.

Sunny Dayz · 24-04-2015 5:08pm

We don't have health insurance and we are happy enough with the public health service he has received so far. Although we haven't had much dealing so far thank God. He was treated for mylitos 5 years ago and then for suspected MS at the end of last year.

I would imagine if we went for health insurance now he wouldn't be covered for MS as its pre existing.

Closov · 24-04-2015 6:04pm

Sunny Dayz wrote: »

I would imagine if we went for health insurance now he wouldn't be covered for MS as its pre existing.

I don't see why not, MS doesn't cause or prevent other illnesses.

The need for healthcare does seem dependent on location then, byhookorbycrook, and I totally get the value of comfort or peace of mind - you can't put a price on that.

At the same time, I wouldn't like people to think they might need it if they don't. I know my neurologist doesn't have it himself!

Salmotrutta · 24-04-2015 6:05pm

Sunny Dayz wrote: »

We don't have health insurance and we are happy enough with the public health service he has received so far. Although we haven't had much dealing so far thank God. He was treated for mylitos 5 years ago and then for suspected MS at the end of last year.

I would imagine if we went for health insurance now he wouldn't be covered for MS as its pre existing.

It's pre-existing, so he would not be covered for MS-related costs for the first 5 years or so, depending on his age, but after that he would have full cover. You never know what else might crop up that you/he might need help with. It's a decision that only you can make, but I wouldn't be without it myself.

byhookorbycrook · 24-04-2015 6:46pm

Closov wrote: »

I don't see why not, MS doesn't cause or prevent other illnesses.

The need for healthcare does seem dependent on location then, byhookorbycrook, and I totally get the value of comfort or peace of mind - you can't put a price on that.

At the same time, I wouldn't like people to think they might need it if they don't. I know my neurologist doesn't have it himself!

He'd probably be on better pay than me and might be able to call in help too

byhookorbycrook · 24-04-2015 6:48pm

And re location, I know a girl from Co. Laois, where Tysabri isn't given. She was attending a neuro in Dublin, but the hospital said ,as she wasn't in their catchment area, she wouldn't qualify for Tysabri as a public patient!!

Closov · 24-04-2015 6:53pm

byhookorbycrook wrote: »

He'd probably be on better pay than me and might be able to call in help too

Yeah, you know he'll get treated like a prince!

Although having said that, I know a few people who work in A&E, and they're very professional in there, nobody gets ahead of the queue unless they need to.

*edit: come to think of it, he's excluding himself from certain hospitals doing that too

Blinder · 24-04-2015 6:57pm

I got health insurance in January It won't cover my MS for 5 years, but it will cover it from then. Since nobody knows how their MS will progress, I figure it's worth paying it for the 5 year without getting benefit for the MS for it. I will still get benefit for any other illness that might happen that are not pre-existing.

pbarr · 28-04-2015 5:56pm

Fingers crossed that this drug will be available soon.

"French firm announces multiple sclerosis drug breakthrough"

Salmotrutta · 29-04-2015 1:22pm

Closov wrote: »

Yeah, you know he'll get treated like a prince!

Although having said that, I know a few people who work in A&E, and they're very professional in there, nobody gets ahead of the queue unless they need to.

*edit: come to think of it, he's excluding himself from certain hospitals doing that too

A consultant on €250,000 plus private practice fees will be well able to afford whatever medical treatment they need, insurance is not so important for them. Plus they will have contacts in many centres of excellence, not just in Ireland, so getting seen will not be a problem.

pbarr wrote: »

Fingers crossed that this drug will be available soon.

Brilliant news, those of us with RRMS are really lucky with the drugs available and in development, it's great to see a treatment that shows promise for progressive MS too. I hope it becomes available very soon and you can benefit!

Salmotrutta · 29-04-2015 8:54pm

More interesting news on the treatment front. Wouldn't it be great to be able to reverse existing nerve damage...

Haven't enough posts yet to post links, so delete the spaces to get the url...

w w w.iflscience.com/health-and-medicine/new-drugs-may-show-promise-reversing-multiple-sclerosis-damage

Blinder · 09-05-2015 5:52am

Hope everyone is having a good weekend.

I have a question. How do you know when you're having a relapse or just having a bad week?
I've been feeling worse than normal all week. Nothing that stood out majorly just numbish heavy limbs, random aches, more tired than normal. Then yesterday the vertigo came back.Does this sound like a relapse or heading for a relapse? Should I do anything?
Thanks in advance

byhookorbycrook · 10-05-2015 9:37pm

Are you breeding a UTI or other infection? What have your other relapses hit?

Blinder · 11-05-2015 6:38am

byhookorbycrook wrote: »

Are you breeding a UTI or other infection?

No infection Went to gp on saturday and he said blood pressure and temperature was normal

byhookorbycrook wrote: »

What have your other relapses hit?

Had double vision for the last one in Dec, and vertigo about 18 months before that.

AilsOD · 11-05-2015 6:16pm

Has anyone ever had their prescription withheld without notice because the nurse has been consistently too lazy to find blood results? I've had the nurse on my back every single time they need blood results, I shouldn't be responsible for getting those results to her, all she has to do is ring my GP. The last month I was due a new prescription for Gilenya, I rang up and asked for it, was told no problem but when I went to pick up my pills last week was informed that no prescription was sent. Called up again, secretary said she didn't know why it wasn't sent. She called me back this evening asking if I'd gotten my bloods done. I said of course I did, she tells me the nurses didn't have the results and so they didn't send the prescription. I was never notified of this so only for the fact I have a very nice pharmacist I could be without my meds this month. Last time they left me without meds I had a massive relapse. This is very worrying. Why is it my responsibility to ensure they get my blood results? The nurse then only works two days one week and three days the next so getting in touch with her is virtually impossible. Sorry for the rant but is it only me that has these issues or do other people in rural areas come up against this?

pbarr · 11-05-2015 6:25pm

There is an MS online survey HERE if anybody would like to take part.

Quote from page:

"The aim of this study is to look closely at the various factors that are associated with different levels of physical activity and exercise among people with MS. This information, in turn will be used to develop new improved exercise programmes for people with MS.

We will also use this information to write a report on physical activity levels among people with MS in Ireland- this report will be the first of its nature in Ireland and will be publically available through MS Ireland channels"

echo beach · 11-05-2015 7:33pm

AilsOD wrote: »

Why is it my responsibility to ensure they get my blood results? The nurse then only works two days one week and three days the next so getting in touch with her is virtually impossible. Sorry for the rant but is it only me that has these issues or do other people in rural areas come up against this?

You aren't the only one. As a pharmacist I come across the problem all the time. Prescriptions are promised but never arrive. There is nobody at the other end of the phone and voice-mails are never returned. Patients who really have enough to worry about are left chasing up people to do their job. I know there are resource issues and everybody is stretched but basic organisation and management skills would go a long way.

It isn't your responsibility to make sure they get your blood results but the reality is that if you don't take on the responsibility nobody else will. What is to happen to those who can't?

I would NEVER leave a patient without essential medicine and believe it would be unethical to do so but my stance (and that of your nice pharmacist) puts us in direct conflict with our regulator the Pharmaceutical Society of Ireland, who say we cannot supply medicine without a valid prescription.

byhookorbycrook · 11-05-2015 8:35pm

AilsOD do you mean the neuro nurse?

AilsOD · 11-05-2015 8:40pm

echo beach wrote: »

It isn't your responsibility to make sure they get your blood results but the reality is that if you don't take on the responsibility nobody else will. What is to happen to those who can't?

I would NEVER leave a patient without essential medicine and believe it would be unethical to do so but my stance (and that of your nice pharmacist) puts us in direct conflict with our regulator the Pharmaceutical Society of Ireland, who say we cannot supply medicine without a valid prescription.

Thanks so much for your reply, glad it's not just me! I don't want to get my pharmacist in trouble for giving me the meds without a valid prescription so I'm not going to say that she did, if I ever get the nurse to call me back. It's completely outrageous that they would do this without even informing me. She's meant to be an MS nurse specialist she should know we have memory problems, the fact I even remembered to get the bloods taken is a bonus for me. To not send an essential prescription without a word to either me or my GP just beggars belief.

It was them who changed the rules and state that I have to have a neurologists prescription, once upon a time a prescription from my GP would have sufficed. If I had the energy I'd be campaigning but I don't and probably neither do a lot of us. And they know that too.

AilsOD · 11-05-2015 8:46pm

byhookorbycrook wrote: »

AilsOD do you mean the neuro nurse?

She calls herself an MS nurse specialist. We've never gotten on very well, she blames me every time there's some sort of problem. I always ring my neurologists secretary when I need a prescription and she passes it on to "the girls in neurology" I didn't even realise this until today, I thought it just came straight from his office. I called the nurse's phone line and couldn't even leave a message, not only is she always unavailable, you can only leave messages on the answerphone within certain times. I am absolutely terrified of my next relapse, there is no one to contact apart from my GP and there's little he can do.

byhookorbycrook · 11-05-2015 10:12pm

If you relapse and you can't get help, then would you consider A and E?Not ideal and I'd want to be really bad before I'd consider it, but it is at least a safety option.

I'm rather spoiled as our neuro, her secretary and our neuro nurse are all very much on top of things and they know if any MS-ers contact them , it's bloomin' important!!

Blinder , how are you today?

echo beach · 11-05-2015 10:48pm

byhookorbycrook wrote: »

I'm rather spoiled as our neuro, her secretary and our neuro nurse are all very much on top of things and they know if any MS-ers contact them , it's bloomin' important!!

That isn't being spoiled. It is the minimum that should be expected. It is only manners to return a call. A few minutes talking to somebody can avoid having to do far more work in the long run.

AilsOD · 12-05-2015 12:28am

echo beach wrote: »

That isn't being spoiled. It is the minimum that should be expected. It is only manners to return a call. A few minutes talking to somebody can avoid having to do far more work in the long run.

I couldn't agree more! But things are what they are. It's just brutal that as well as battling this damned condition we have to battle with those who are supposed to be helping us!

AilsOD · 12-05-2015 12:32am

byhookorbycrook wrote: »

If you relapse and you can't get help, then would you consider A and E?Not ideal and I'd want to be really bad before I'd consider it, but it is at least a safety option.

Oh I have been known to show up in neurology and beg for help! I went the A&E route once (on the advice of the out of hours doctor service) and was completely ignored. Neuro had no record of my ever being there. So I just bypass them.

Blinder · 12-05-2015 7:25pm

byhookorbycrook wrote: »

Blinder , how are you today?

Same for the last few days. Think it's a mild relapse. Loads of new symptoms but none of them severe enough for steroids, so going to ride it out and hope it passes soon.
Meeting with the Ms nurse next week to discuss symptoms and meds

ash23 · 13-05-2015 9:55am

AilsOD wrote: »

I couldn't agree more! But things are what they are. It's just brutal that as well as battling this damned condition we have to battle with those who are supposed to be helping us!

I know that usually my GP sends blood work to the local hospital but for mine, they send them to the hospital I am treated at for my MS.

Then I call the MS nurse specialist and leave a voicemail with my details and tell her that I've had my bloods. She checks (and she can because they're at her hospital so easily accessible) and then calls me back to let me know that they're ok or if they need to be redone etc.

It might be an idea to have the bloods sent to the same hospital that your MS specialist nurse is at. I know when mine used to be sent to the local hospital they were always delayed.

AilsOD · 14-05-2015 9:03pm

ash23 wrote: »

It might be an idea to have the bloods sent to the same hospital that your MS specialist nurse is at. I know when mine used to be sent to the local hospital they were always delayed.

I doubt they'll do that for me to be honest but it would be great if I could get them sent to the regional (where all the MS stuff is handled) In good news though, finally got my prescription in the post today! Missed a call from the nurse on Tues, rang her back and left a message but haven't heard anything since. Next time I'm going to ring and leave a message way before I need the prescription and let her know that I need it at the start of the month and bloods aren't due till the end of the month so please don't withhold it this time!

Roxy12 · 16-05-2015 10:57am

Hi there. Hope someone here might be able to give me some advice. I received a definite MS diagnosis this week. 6 months after onset of double vision and severe fatigue, 3 weeks in hospital and 2 lumber punctures later. Still in shock but at the same time it's a relief to finally have a diagnosis. My LP was positive for oligoclonal bands but my initial MRI was clear. Lesions only started to appear in the last two MRIs. Anyhow I was wondering if anyone here would be able to give me advice on the different drugs they've tried. My Neuro has given me a load of information on the following drugs: Avonex, Tecfidera, Plegridy, Betaferon, Copaxone and Rebif. I've to ring them back once I've picked one. So if anyone has been on any of these and has any advice about side effects etc I'd really appreciate the help. It's all a bit daunting and I haven't a clue. Thanks very much in advance

ash23 · 16-05-2015 11:28am

Sorry to hear of your diagnosis

I was diagnosed xmas2012 and initially chose copaxone. I went for it as I wanted to avoid the flu like side effects of avonex, betaseron and rebif.
Those were the three other choices at the time.

Copaxone was a daily injection. Small needle so I didn't find it painful to inject. Side effects for me were minor - small bruising, itchy hard lumps at injection site for a while after.

After six months my MRI showed new activity so I was switched to Gilenya.

Hopefully someone else can help you with info about the other meds.
The MS society website also has info on all the available medications

byhookorbycrook · 16-05-2015 6:43pm

Oh another diagnosis, sorry to hear it. I think it's a bit odd for the neuro to tell you to pick a drug! I'd be inclined to ask them which they think is best suited to you .

As an aside, there is a link between Vit D and MS and many MS-ers take Vit D, B and omega oils (I takes Udo's Oil, it's plant based and I get it through my long term illness book)

AilsOD · 16-05-2015 10:58pm

Hi Roxy, I'm also sorry to hear of your diagnosis, it is an awful shock. I've also been diagnosed since xmas 2012 and I'm currently on Gilenya. I did start out on Rebif and like you was told to pick one. Only had the choice of Copaxone, Rebif, Avonex and Betaferon at the time. Rebif was awful for me, the side effects were brutal and it didn't do much for my symptoms either. Luckily I have a brilliant neuro and he switched me to Gilenya.

I've heard others say Rebif has been brilliant for them. I have a friend on Betaferon for the past three years and she's doing really well on it. It really is a trial and error thing. Best advice I can give you is read all the literature and maybe look up the websites (MS Ireland have lots of info on the various drugs but be careful with the internet, it can say too much sometimes!) Everyone is different, the drugs affect us differently and the symptoms vary hugely. You really do have to forge your own path. I wish you the very best of luck, let us know how things go and remember you are not alone.

Roxy12 · 17-05-2015 11:01am

Thanks very much for all the advice. I'm still finding it hard to get my head around it all. Feels like I'm talking about someone else rather than myself..hoping it'll start to sink in soon

!

I quite like that my nuro is letting me pick the drug. Feels like I've some sort of control over this stage at least. He did say it's no bother to switch if one doesn't suit so I need to just make the decision. Going to do out a military style list of pros and cons today and then just go with one

! Yeah I made the mistake of over googling stuff before my diagnosis

but I'm just sticking with the official MS websites from now on.

That's interesting about the omega oils. Will have to pick some up. The neuro said about the vit D so I'm taking that now too.

AilsOD · 17-05-2015 10:00pm

byhookorbycrook wrote: »

As an aside, there is a link between Vit D and MS and many MS-ers take Vit D, B and omega oils (I takes Udo's Oil, it's plant based and I get it through my long term illness book)

Oh that's interesting. I get Naudicelle on the long term illness book, it's evening primrose oil. My GP put me on it. The Vit D I take is on the medical card so it's €2.50 a month, not too bad

sqooka · 17-05-2015 11:58pm

Hi all, I'm switching off copaxone to gilenya shortly and was hoping that anyone who's been on gilenya can tell me how they've found it? Looking forward to not injecting on the one hand, but I'm dreading any tiredness or flu-ishness.

kieranfitz · 18-05-2015 12:07am

Hey guys, just got diagnosed on Tuesday after nearly 2 weeks in hospital, still trying to get my head around things.

Salmotrutta · 18-05-2015 11:05am

sqooka wrote: »

Hi all, I'm switching off copaxone to gilenya shortly and was hoping that anyone who's been on gilenya can tell me how they've found it? Looking forward to not injecting on the one hand, but I'm dreading any tiredness or flu-ishness.

I've been on it for about 8 months now, no problems, zero side effects and my last MRI in Feb showed no new lesions and reduced size of existing lesions. Just had another MRI this week but haven't got results yet, hopefully all good. Just have to remember your immune system will be less effective so get to your GP if you get flu/cold symptoms and get on antibiotics asap.

sqooka · 18-05-2015 12:01pm

Thanks! Glad to hear it's going well! I was already told about going to the doctor - but I'm wondering what happens with viral infections? They're almost always what I have and antibiotics don't do anything for them.

Salmotrutta · 18-05-2015 12:59pm

sqooka wrote: »

Thanks! Glad to hear it's going well! I was already told about going to the doctor - but I'm wondering what happens with viral infections? They're almost always what I have and antibiotics don't do anything for them.

Yep, just gotta get through a virus same as you always did, I had one before Christmas that took nearly 3 weeks to get fully over, that would usually take a week, just look after yourself and eat properly. I didn't go to the doc that time as I assumed it was viral. I got a second one after Christmas that I suspected was also viral, but this time I went to the GP and got antibiotics, cleared up in no time, so I'll do that in future just in case it's not viral. Put it this way, I'd much rather be on Gilenya and get the odd bad cold than not be on it!

Salmotrutta · 18-05-2015 1:02pm

kieranfitz wrote: »

Hey guys, just got diagnosed on Tuesday after nearly 2 weeks in hospital, still trying to get my head around things.

Welcome Kieran. Sorry to hear about your diagnosis, but we're all in same boat here so feel free to ask questions. I'm only diagnosed since last year myself and was pretty worried at the start, but I've learned that MS doesn't have to mean disability or constant illness - get on treatment and hopefully your symptoms will be few and far between and you can get on with life. Feel free to PM if you want to chat...

AilsOD · 18-05-2015 1:11pm

kieranfitz wrote: »

Hey guys, just got diagnosed on Tuesday after nearly 2 weeks in hospital, still trying to get my head around things.

Take your time with it Kieran, there's no hard and fast rules as to how to get your head around it or how long it should take. I'm diagnosed two and a half years and I'm not sure I've my head around it!

AilsOD · 18-05-2015 1:16pm

sqooka wrote: »

Hi all, I'm switching off copaxone to gilenya shortly and was hoping that anyone who's been on gilenya can tell me how they've found it? Looking forward to not injecting on the one hand, but I'm dreading any tiredness or flu-ishness.

I'm on Gilenya a year and a half now, I love it, I feel like it's given me my life back. I've never had any side effects, a bit of a reduction in the fatigue (it's still there but manageable) I've also had no relapses since being on it.

byhookorbycrook · 20-05-2015 9:05pm

Ah feck, Kieran, I hate to see our little group growing

Plenty advice and understanding to be had here.

Agenda · 26-05-2015 8:55pm

Hi, can anyone recommend a Ms neurologist in Dublin with a good bedside manner. My current one was great at the diagnosis stage, but impossible to talk to. Won't let me talk, shouts me down and basically has a god complex. I am not a difficult patient have been with my go for 30 years and never had a cross word.

I had my appt. with my nuero yesterday and it was so awful that I am already dreading the next one in September.

Thanks,

Paddy James · 26-05-2015 9:57pm

sqooka wrote: »

Hi all, I'm switching off copaxone to gilenya shortly and was hoping that anyone who's been on gilenya can tell me how they've found it? Looking forward to not injecting on the one hand, but I'm dreading any tiredness or flu-ishness.

I am on it since 2012 not a problem with it for me

Paddy James · 26-05-2015 9:58pm

Agenda wrote: »

Hi, can anyone recommend a Ms neurologist in Dublin with a good bedside manner. My current one was great at the diagnosis stage, but impossible to talk to. Won't let me talk, shouts me down and basically has a god complex. I am not a difficult patient have been with my go for 30 years and never had a cross word.

I had my appt. with my nuero yesterday and it was so awful that I am already dreading the next one in September.

Thanks,

Ann

Did you try Ryan Tubridys brother ?

Paddy James · 26-05-2015 9:59pm

Salmotrutta wrote: »

I've been on it for about 8 months now, no problems, zero side effects and my last MRI in Feb showed no new lesions and reduced size of existing lesions. Just had another MRI this week but haven't got results yet, hopefully all good. Just have to remember your immune system will be less effective so get to your GP if you get flu/cold symptoms and get on antibiotics asap.

I have had the opposite reaction. Have not gotten a flu in the past 3 years on it

byhookorbycrook · 26-05-2015 9:59pm

Paddy James wrote: »

Did you try Ryan Tubridys brother ?

Have heard varying reports...

Salmotrutta · 26-05-2015 11:06pm

Paddy James wrote: »

I have had the opposite reaction. Have not gotten a flu in the past 3 years on it

I was told I probably wouldn't get any more infections, but if I did my immune system would be slower to react and fight it, so they could be more severe, therefore to get antibiotics. I was also advised to get the flu vaccine, which I did. I probably average 2 colds a year anyway, that's what I've had since I went on Gilenya, but the first one was definitely more severe than I'd be used to. Second one I did get antibiotics and got over it very quickly. The fact you haven't gotten a flu in 3 years may have nothing to do with Gilenya, just that you haven't been exposed to any that you weren't already immune to.

Paddy James · 26-05-2015 11:11pm

Salmotrutta wrote: »

I was told I probably wouldn't get any more infections, but if I did my immune system would be slower to react and fight it, so they could be more severe, therefore to get antibiotics. I was also advised to get the flu vaccine, which I did. I probably average 2 colds a year anyway, that's what I've had since I went on Gilenya, but the first one was definitely more severe than I'd be used to. Second one I did get antibiotics and got over it very quickly. The fact you haven't gotten a flu in 3 years may have nothing to do with Gilenya, just that you haven't been exposed to any that you weren't already immune to.

Could be true but have 3 kids under 4 years and I can tell you between them and my wife I have spent a lot of time at the GP with them and also the younger lady ended up in hospital for 2 nights with a severe flu.
Actually I ran out of tablets a few times and I actually then get flu like symptoms but as soon as I take just one again symptoms go.

But as we know we are all different

MS in all its glory

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