MS in all its glory

ash23

discobeaker wrote: »

Hi all

So I had an appointment last week as my year check up in the hospital. I was given a clean bill of health... Well,except for the ms,but was told I should excerise so I joined a gym and have my induction day tomorrow.

Anyone know of what excerises I should avoid or what I should work on? My balance ain't the best so I won't go straight for the treadmill but any suggestions?

Thanks again

My gym wouldn't let me in until I had a doctors letter so might be no harm to double check with them.

discobeaker

ash23 wrote: »

My gym wouldn't let me in until I had a doctors letter so might be no harm to double check with them.

Hi ash, I told them up front about the ms and asked if I needed a doctors note but the said if I could get one it would be nice to have but not to worry if I can't get one. They are just going to keep a note on my account.

Thanks byhookorbycrook, Only reason I joined the gym was when I arrived home from my hospital appointment there was a flyer through the letterbox with a discount offer for the gym so it was fates way of telling me to look after myself abit better.

AilsOD

Hey guys,

I had my six-monthly check-up in the hospital today, all is well, they are making my check-ups yearly now but my Gilenya nurse said to ask about getting an MRI done as I haven't had one since March 2013. The doc said she would talk to my consultant and came back and said that yes she would put me forward for one and that it'd probably take around 4 to 5 months but would hopefully be done by my July appointment. Then the MS nurse came into the room and said more like 9 months to a year and that hopefully it'll be done by next year's appointment and there's no need for a July appointment unless something happens relapse wise. I'm just wondering is this normal across the country or is it just the West? 9 months to a year waiting for an MRI?

discobeaker

Hi AilsOD

I just had my year check up last Tuesday In the mater hospital in Dublin and was told that cos it's nearly 2 years since my last MRI that I should get another one done soon but I could be waiting a year with them cos of the waiting list so I was told to possibly go to Cavan hospital but that could take 6 months to get

AilsOD

discobeaker wrote: »

Hi AilsOD

I just had my year check up last Tuesday In the mater hospital in Dublin and was told that cos it's nearly 2 years since my last MRI that I should get another one done soon but I could be waiting a year with them cos of the waiting list so I was told to possibly go to Cavan hospital but that could take 6 months to get

Heya thanks for the reply. Seems like around a year is the the standard waiting time then. It's unreal that it takes so long to get a 20 minute scan done! Funny how they could fit me in when it suited them two years ago though. Oh well it's not an urgent thing this time so I'll just forget about it until I get the appointment I guess.

ash23

Hi AilsOD. I'm also in the West and my first MRI was done within a month but that was while I was relapsing and waiting for diagnosis so it was put through as urgent.
Since then my neuro has advised me that I'm better off going private for my MRI due to the waiting list being so long for non-urgent cases. I'm lucky that my employer provides health insurance.

Anyway I had one done in Merlin Park in October. It was a brain and spine and total cost was ~€450 as it's essentially two MRIs in one so double the cost.
I had an appointment within a week.

Again, I'm covered by health insurance but I think if it was just a brain MRI I'd probably pay for it privately if I could to be honest as it's be in and around the €200-250 mark.

I understand that's not an option for everyone but just putting it out there.

AilsOD

Hi ash23,
Thanks for the reply. Yeah I get where you're coming from and if it were urgent I'd definitely save up and pay for it privately. I don't have health insurance or a job at present so I'll just wait unless something changes with my MS. I do know that if my neuro wants something done quickly, it gets done, so if he's not worried I'm not worried.

byhookorbycrook

We have been MRI-ed every three months as we belong to the special Tysabri and JC+ club!! If our titre levels stay reasonably low and stable it will be once every 6 months, otherwise, it used to be once a year.

AilsOD

byhookorbycrook wrote: »

We have been MRI-ed every three months as we belong to the special Tysabri and JC+ club!! If our titre levels stay reasonably low and stable it will be once every 6 months, otherwise, it used to be once a year.

That must be a scary place to be, JC+ and on Tysabri. I suppose it's worth the risk if they monitor you carefully. I'm also JC+ so no Tysabri for me. Gilenya is working wonders though so I'm happy enough for now.

byhookorbycrook

The initial shock of being JC+ was unreal, but extra MRIs were a huge comfort. Our neuro and the same nurses are present at each Tysabri infusion so that helps too. I was negative, first time out , then a low positive (just over 0.4 in titre level), negative again and have suddenly gone from 0.4 to 0.8 so was a bit worried about that. Neuro isn't worried, I trust her judgement.

Yes, the whole PML thing can be very scary. When I started Tysabri the PML risk was supposed to be one in 40,000 and was very scared. Due to my titre level, I'm about 1 in 3,000 now and I don't even worry about it too much any more.

I'm sorry I didn't get Tysabri earlier and am hoping I might get Lemtrada down the line. Tysabri has been really good to me, I didn't experience any improvements as some have but have been relapse free since starting on it in Jan 2009

eimsRV

What is JC+ ?

I'm finding the cold weather tough, went for a walk with my daughter and my dog and had to turn back after 30 mins as my right side was burning with the cold. Since October I haven't been able to tell if water is hot or cold with my right hand but funnily enough though this evening I was able to tell!
My first attack happened the day after I did the ice bucket challenge. Cold is not my friend!

AilsOD

@byhookorbycrook fingers crossed for you that all continues to go well with the Tysabri, sure as I do tell myself I could get hit by a bus tomorrow, no point in worrying about the what-ifs. Glad it's doing its job and keeping you relapse free. I'm also keeping an eye on developments with Lemtrada, also thinking in a "down the line" scenario but it would be good to know there's something else out there if needed.

@eimsRV JC+ means that there is a virus inside you that has the potential to cause a condition called PML that is fatal in the majority of cases. A huge percentage of the general population has it, it lies dormant unless something weakens the immune system (Such as Tysabri) and it attacks. It's probably more complicated than that but that's the simple explanation as I know it.

eimsRV

Thanks AilsOD

kkelly77

Hello everyone,

I think it's safe to presume that MRI scans are quite important, both for identifying new lesions quickly or just to have a nice confirmation that nothing has gotten worse. However, not everyone has access to private medical insurance, allowing for a speedy appointment date for a scan. Those on the public system are all too aware of the circa 1 year waiting list.

In 2013 I had to use Euromedic, Dundrum for an MRI, which I needed quickly and couldn't wait for the public system. At the time, I made contact with a manager there with a bit of influence in relation to the cost of scans.

I made the suggestion that, as I and others, will need regular MRI scans, would it be possible to have some sort of 'discount' for regular users He did say that this idea had been brought up before internally in the company but AFAIK nothing has come of it.

I would like to approach them again with this idea and I am wondering if there are MS'ers on boards that would be interested, a sort of group scheme? If I have some idea of a number of people that would be interested, this might make for a more appealing suggestion to Euromedic. We could perhaps even submit this suggestion to several private providers of MRI services.

What do you think?

ash23

It's a great idea kkelly, however it's be worth getting the neuros opinion as to which clinic to attend. My first MRI was in the Galway clinic and my neuro said he prefers them to be done in Merlin Park or University Hospital as the quality of the MRIs are so much better.
He mentioned the same again when I was going for my last MRI and mentioned that my health insurance covered me in the Galway clinic but he said no point as he wants one from one of the better imaging centres.
I actually contacted my insurer to get them to make an exception on the policy to allow MRIs from Merlin Park and GUH for this reason.

So no harm checking with the neuro as to where the better imaging centres are. When you're looking for tiny changes or tiny lesions, quality probably makes a big difference.

AilsOD

Same boat here, Ash! Had my first MRI in the clinic, paid whatever amount of money it was (no health ins), had the lumbar puncture there too and then had to endure the mix up that led to me being diagnosed, rather rudely, over the phone two weeks before Christmas. I was just lucky that this all happened while waiting for my appointment in GUH. My neuro there said that the MRI wasn't great quality and sent me for another one in Merlin Park which I got done same time as the Solu-medrol to get rid of the effin double vision. I wouldn't change neuro's for the world now, waiting times or no waiting times. My MS finally seems to be fairly stable and while it is I'm not bothered about MRI scans, it was the Gilenya nurse who suggested I get one done.

ash23

I avoided the lumbar puncture thankfully. I was diagnosed the week before Christmas too lol. Back in 2012 though. Follow up appointment at the end of Feb to get my MRI results. Be interesting to see what changes have occurred since starting gilenya.

kkelly77

ash23 wrote: »

It's a great idea kkelly, however it's be worth getting the neuros opinion as to which clinic to attend. My first MRI was in the Galway clinic and my neuro said he prefers them to be done in Merlin Park or University Hospital as the quality of the MRIs are so much better.
He mentioned the same again when I was going for my last MRI and mentioned that my health insurance covered me in the Galway clinic but he said no point as he wants one from one of the better imaging centres.
I actually contacted my insurer to get them to make an exception on the policy to allow MRIs from Merlin Park and GUH for this reason.

So no harm checking with the neuro as to where the better imaging centres are. When you're looking for tiny changes or tiny lesions, quality probably makes a big difference.

AilsOD wrote: »

Same boat here, Ash! Had my first MRI in the clinic, paid whatever amount of money it was (no health ins), had the lumbar puncture there too and then had to endure the mix up that led to me being diagnosed, rather rudely, over the phone two weeks before Christmas. I was just lucky that this all happened while waiting for my appointment in GUH. My neuro there said that the MRI wasn't great quality and sent me for another one in Merlin Park which I got done same time as the Solu-medrol to get rid of the effin double vision. I wouldn't change neuro's for the world now, waiting times or no waiting times. My MS finally seems to be fairly stable and while it is I'm not bothered about MRI scans, it was the Gilenya nurse who suggested I get one done.

No problem folks. I'll keep asking for money off when I need to go back

AilsOD

ash23 wrote: »

I avoided the lumbar puncture thankfully. I was diagnosed the week before Christmas too lol. Back in 2012 though. Follow up appointment at the end of Feb to get my MRI results. Be interesting to see what changes have occurred since starting gilenya.

You're like my MS twin lol! Mine was 2012 as well and I had my first proper consultation with my current neuro end of the following Feb. I reckon myself, if I'd had a better MRI first time round, the LP wouldn't have been necessary. They charged me enough for that in the clinic too. I only glanced at my MRI images the last day as the doc had them on her screen and I could clearly see (flippin scary looking) lesions on my c-spine. Maybe that's not the case and they would have done the LP anyway but I guess I'll never know.

Yeah it will indeed be interesting to see how things look after over a year on gilenya. Although, the way waiting times seem to be I'll be two years on gilenya before I get the next scan. Not bothered though as long as symptoms stay stable.

ash23

AilsOD wrote: »

You're like my MS twin lol! Mine was 2012 as well and I had my first proper consultation with my current neuro end of the following Feb. I reckon myself, if I'd had a better MRI first time round, the LP wouldn't have been necessary. They charged me enough for that in the clinic too. I only glanced at my MRI images the last day as the doc had them on her screen and I could clearly see (flippin scary looking) lesions on my c-spine. Maybe that's not the case and they would have done the LP anyway but I guess I'll never know.

Yeah it will indeed be interesting to see how things look after over a year on gilenya. Although, the way waiting times seem to be I'll be two years on gilenya before I get the next scan. Not bothered though as long as symptoms stay stable.

I was only disgnosed because I had 2 lesions in C-spine and one teeny tiny one on the brain. I said specifically at my first proper neuro appointment that I don't have to have a LP. So the neuro said that he was ok with diagnosing me based on the three relapses I'd had and the MRI showing lesions in brain and spine. If I was willing to accept it. Which I was.

I was on Copaxone from Dec 12 to Oct 13 and started G in Nov 13. Had a brain MRI when it seemed Copaxone wasn't working for me. And then the brain and spine MRI after a year on G. As I said I'm very lucky that my employers cover my health insurance.
It's the only thing I've ever used my health insurance for but it's by far the most useful.

AilsOD

ash23 wrote: »

I was only disgnosed because I had 2 lesions in C-spine and one teeny tiny one on the brain. I said specifically at my first proper neuro appointment that I don't have to have a LP. So the neuro said that he was ok with diagnosing me based on the three relapses I'd had and the MRI showing lesions in brain and spine. If I was willing to accept it. Which I was.

I was on Copaxone from Dec 12 to Oct 13 and started G in Nov 13. Had a brain MRI when it seemed Copaxone wasn't working for me. And then the brain and spine MRI after a year on G. As I said I'm very lucky that my employers cover my health insurance.
It's the only thing I've ever used my health insurance for but it's by far the most useful.

I do think things would be easier if I had health insurance they would certainly be quicker and wouldn't require me to resort to desperate measures (long story but it meant I started on G in Nov 13 instead of sometime in 2014 as they had planned!) I had an awful time on Rebif but went into full on relapse when I stopped. Gilenya has been brilliant though I'm happy to say.

JohnMearsheimer

Hi lads,

Do any of you suffer from slurred speech? My speech has been a bit off since yesterday and I'm tripping over words. My girlfriend and parents didn't notice anything but one of my friends did. I'm just wondering am I going mad??

Agenda

Hi john, slurred speech happens every now and then for me, I also trip over my words occasionally or the wrong word comes out. Thankfully not too often.

Ann

byhookorbycrook

If MS-ers are tired/carrying a cold or some form of infections or in some cases cold/others hot, we can have odd little symptoms . If it persists for more than 48 hours, I'd talk to your neuro/nurse.

AilsOD

Hi John, no you're not going mad, it does happen. I find it happens to me on days when the fatigue is particularly bad but sometimes it just happens for no apparent reason at all. But yeah if you find it gets persistent maybe contact your doctor or the nurse.

JohnMearsheimer

I put off a few phone calls I had to make today at work because of my speech. I rang my MS nurse this evening because I don't want this to get in the way of my work. She said she could hear I was a bit slow speaking on the phone. My parents and girlfriend did notice it this evening. She said if it persists for 48 hours or longer it would probably count as a relapse. I'll be at the 48 hour mark in the morning. This may count as my first relapse since I first went to hospital last April. It's a bit disappointing as I've felt almost completely fine since I left the hospital last year. Hopefully it's not anything more than feeling a bit run down.

The nurse said she'd try to speak to my neurologist in the morning and give me a call back.

Salmotrutta

ash23 wrote: »

It's a great idea kkelly, however it's be worth getting the neuros opinion as to which clinic to attend. My first MRI was in the Galway clinic and my neuro said he prefers them to be done in Merlin Park or University Hospital as the quality of the MRIs are so much better.
He mentioned the same again when I was going for my last MRI and mentioned that my health insurance covered me in the Galway clinic but he said no point as he wants one from one of the better imaging centres.
I actually contacted my insurer to get them to make an exception on the policy to allow MRIs from Merlin Park and GUH for this reason.

So no harm checking with the neuro as to where the better imaging centres are. When you're looking for tiny changes or tiny lesions, quality probably makes a big difference.

I hadn't heard that about the clinic Ash, that's where I've had all my MRIs so far. Might mention it my neuro next time I'm in. Which insurer are you with out of interest? Good to know they might make an exception...

ash23

Salmotrutta wrote: »

I hadn't heard that about the clinic Ash, that's where I've had all my MRIs so far. Might mention it my neuro next time I'm in. Which insurer are you with out of interest? Good to know they might make an exception...

I'm with Laya.
Our company were moving to them from VHI and they were in work to talk to us. I mentioned that I only really use it for MRIs and was worried as the Galway Clinic don't cover Merlin Park and GUH. They referred it and next day advised me that they'll cover it. I used it in October and just had to get a letter from Laya for Merlin Park confirming that they were going to cover it.

The fact that it was with an employer group might have meant there was a bit of sway there but no harm in trying. VHI cover Merlin Park if you're referred by a consultant.

Salmotrutta

Thanks Ash. I'm with Laya too so if my neuro thinks he'd rather see a better scan I'll ask them will they cover it.

Blinder

You want to say thank for the advice I got last week.I did follow up and got to see a different neurologist. It's confirmed that I do have MS and getting ready to start on Rebif.
I'm ok with the news, a knew it anyway, so it wasn't a major shock. But I'm sure I'll be back with loads of questions when I start to get my head around it