MS in all its glory

Agenda · 19-09-2014 8:23pm

Hi Closv, thank you for your reply, it was helpful. My nuero is saying it can help PPMS sometimes and it is worth a go. As there is nothing else available I am thinking what have I to lose.

Also have been reading wheelchair kamikaze and finding it excellent
Thanks,

Agenda · 21-09-2014 8:21pm

Hi everyone, looking for some info on iv steroids. Feeling really bad at the moment and it has being raised as an option by the nuero. Has anyone found them beneficial or not. Also is it an out patient or in patient procedure.

Thanks

ash23 · 21-09-2014 9:42pm

Agenda wrote: »

Hi everyone, looking for some info on iv steroids. Feeling really bad at the moment and it has being raised as an option by the nuero. Has anyone found them beneficial or not. Also is it an out patient or in patient procedure.

Thanks

Hi.
I haven't had them in a while but at one point I was having them every few months.

They did the trick for me in terms of speeding up recovery during a relapse. Side effects are a bit horrible but overall I personally found the good outweighed the bad.

I went in as a day patient for three consecutive days each time. IV into the arm. Takes about an hour to get the full dose.

Side effects for me were horrible taste in my mouth during administration of the steroids. Was wired after so trying to sleep was pointless. Was lucky to get a couple of hours a night.
I was constantly starving so gained some weight. A couple of days after the last dose my upper body, particularly my neck and chest, was tender and sore, like it felt bruised.
But the side effects only last a few days in my experience and as I said, they cleared up the symptoms pretty quickly.

Salmotrutta · 23-09-2014 9:53am

Has anyone here had experience getting life cover for a mortgage? Do any companies insure you once you disclose your MS?

Sparkles79 · 30-09-2014 6:38pm

Hello everyone!! I'm a newbie to Boards. I was diagnosed with ralapsing/remitting MS in 2010. I can't believe my MS is nearly 4 years old!! 😕
The last 4 years have absolutely been the hardest years of my life but I'm definitely a stronger person for it!! Although I haven't had a chance to read through the whole thread, it's a great idea and it's wonderful to read some of your experiences. It's good to know that I'm not the only person who's constantly shattered with numb body parts, vibrating feet, shaky hands, the boa constrictor hug, headaches and the odd bout of optic neuritis!! 😉
The reason behind me finding you on here is because I was trying to find advice on the internet about the benefits of public v private care for a long term illness. Currently I'm public and treatment wise have absolutely no complaints whatsoever. However, my neurologist doesn't see private patients and it's hard to sit and wait 3+ hours to see him after trying for days/weeks to get hold of and discuss everything with the nurses. I have health insurance but the ms society say it's best to be public as there are more treatment options..and health insurance companies won't pay long term for some treatments. Its all a bit confusing and I'd love to hear from anyone who knows anything about it. If admin aren't comfortable with the topic please could you PM me?
Looking forward to getting to know you all 😊
Sparkles x

Agenda · 30-09-2014 7:00pm

Hi Sparkles, I see prof. Tubirdy in Vincent's private. I am never more than 10 minutes waiting and if I ring his office he rings me back the same day. I have just received my long term illness booklet. So far being private has not stopped any treatment options.

Ann x

byhookorbycrook · 30-09-2014 7:23pm

ms society say it's best to be public as there are more treatment options..and health insurance companies won't pay long term for some treatments.

MS society need to get their facts right so. I'm on one of the most expensive drugs about, Tysabri and couldn't get on it without VHI cover. Many public hospitals cap the number of public patients who are on it, so you may actually limit yourself. I get my "ordinary " meds like gabapentin and amitriptyline on the LTI book, we're fighting to have Fampyra put on the LTI scheme at present.

Sparkles79 · 30-09-2014 10:33pm

Thank you both for replying. I suppose I'm lucky...I'm on Tysabri and have been for over a year. I immensely dislike it but it really is my only option. I'm on other meds too like provigil, Lyrica....the usual cocktail!! 😐😉
The MS society said that VHI 'cap' how long you can be on it for and that's what scared me off switching to private. Another worry is how to go about finding a neurologist?? I had a blip with mine earlier this year and I've lost confidence in him. 😕 I'm also sick to death of the waiting game but at the same time a little nervous of the costs if i need to see them more regularly.
This flamin' disease is a pain in the derrière to say the least!! But I just feel that if I found a good neurologist and took some control back, it would make all the difference. X

byhookorbycrook · 30-09-2014 11:03pm

Each year (and I've been on it since Jan 2009) my neuro tells the VHI I need it and they agree. Never heard of anyone being stopped. by VHI at least. Some of the gang in our group have come off Tysabri by choice as they are JC+. My first JC test was negative, next positive and the most recent one negative again!! (Not meant to be possible...) Either way, I'm staying put.

ash23 · 01-10-2014 10:22am

I think Sparkles if you're on Tysabri already through the public system then you're as well off to stay put as you are.

I have private insurance but my neuro also advised me to stay public as that is how I was admitted initially.

I've used my private insurance for MRIs but so far, I've found the public system great. Steroids and appointments and treatment have all been on the public system.

I suppose I'm in a position where I'm very well and have been relapse free for a year (touch wood) so haven't needed anything other than my meds (I'm only on Gilenya - again touch wood!)

I might change my mind if things get worse and I'm having delays in getting treatment. But my neuro takes both private and public patients and he was pretty adamant I was better off on public.

byhookorbycrook · 01-10-2014 4:52pm

I'm probably in a very spoiled position. We get our Tysabri dates a year ahead and they are on Sundays so no missing work. Our neuro is at each infusion, we have the same nurses and a neuro nurse as well. It means a long drive for me but I wouldn't swop the neuro for diamonds.

Sparkles79 · 02-10-2014 8:20am

byhookorbycrook wrote:

I'm probably in a very spoiled position. We get our Tysabri dates a year ahead and they are on Sundays so no missing work. Our neuro is at each infusion, we have the same nurses and a neuro nurse as well. It means a long drive for me but I wouldn't swop the neuro for diamonds.

That sounds amazing!! You're definitely in a spoiled position!ðŸ˜‰
Where is your treatment based? I'm in the west with a nearly 4 hr round trip for my infusions...the same for neuro appointments with a very long wait added on!!

Sparkles79 · 02-10-2014 8:27am

Thanks Ash23, I just wish I had a bit more control over my hospital appointments and treatmemts. Also access to my neuro when i need it rather than having to reiterate it to him a couple of weeks later after the nurses have passed on to him that there's a problem.
I appreciate your feedback, thank you x

fergal.b · 02-10-2014 8:53am

I'm a full time carer for my wife "MS" and son "CP" in the public system, most of the MS clinic appointments are for 2:00 and can go on for hours meaning I cant get home in time for my son coming home from school so my only option is to make private appointments to see the neuro and pay cash it's not cheep but it's worth it for piece of mind knowing that I will be home in time for my son and the fact that we don't have to sit in the public waiting room for hours on end.:(

.

ash23 · 02-10-2014 12:39pm

Sparkles79 wrote: »

Where is your treatment based? I'm in the west with a nearly 4 hr round trip for my infusions...the same for neuro appointments with a very long wait added on!!

I'm also in the west and travel to Galway for IV steroids, MRIs and neuro appointments which is about an hour and a half each way.
If I had to do it every month I'd probably be a bit fed up of it to be honest but its only been twice in the last year.

The neuro appointments tend to be fairly quick recently as I haven't needed to see the neurologist. But when I do it takes hours and hours.

I find the MS nurse pretty prompt but again, I wouldn't have to call often.

Sparkles79 · 02-10-2014 5:07pm

ash23 wrote:

I'm also in the west and travel to Galway for IV steroids, MRIs and neuro appointments which is about an hour and a half each way.

If it's early morning we'd do it in an hour and a half too but usually its nearer the 2 due to school and work traffic in Headford and Galway. â˜º

Sparkles79 · 02-10-2014 5:10pm

It's hard Fergal isn't it? i have to travel to Galway once a month sometimes twice and thank god for my in laws being here to look after our children and do the drop offs and pick ups. x

JohnMearsheimer · 02-10-2014 5:11pm

Hi all,

I was back in with my neurologist on Tuesday. I had a MRI scan last week as well. She told me I had no new lesions since my last scan in April. The lesion that sent me to hospital in April even seemed to have gotten a bit smaller. The last time I was with her in May she told me she would put me on medication when she saw me in September but this wasn't even discussed when I was with her on Tuesday. The consultation was about 5 minutes in duration.

I told her about one or two small things that happened over the summer (my left foot went numb for a few hours and my control over it wasn't great, it was back to normal the following morning) She did a quick reflex exam and told me to come back in 6 months time. Good news I guess but I'm still not sure where I stand with the illness.

byhookorbycrook · 02-10-2014 8:44pm

Anything less than 24 hours isn't really of concern, so a few hours is no cause for worry. MS-ers can be more sensitive to heat/cold/stress/infections- any of the above can make symptoms temporarily worse.
I travel 4 hours each way to get to my neuro in Kerry. She is absolutely fantastic, well up on all the latest and straight to the point. There's no way I'd swop to anyone else, even though I'm less than an hour from Dublin.

Loretogirl · 10-10-2014 10:05am

I am on Gilenya, can you have the flu injection if taking this drug,I was thinking of having it.

Thanks

fergal.b · 10-10-2014 10:47am

Loretogirl wrote: »

I am on Gilenya, can you have the flu injection if taking this drug,I was thinking of having it.

Thanks

Yep we are booked in for our shots next thursday

and have had them the last few years while my wife is on Gilenya.

.

byhookorbycrook · 10-10-2014 6:42pm

I would suggest all MS-ers get the flu jab. The Tysabri gang should probably get it two weeks after the infusion, some people say, but I get the shot whenever the nurse can see me.

ash23 · 10-10-2014 8:56pm

Had my flu jab last week and I'm on gilenya.

I've started aqua aerobics and can't recommend it enough. I can do things in the pool I couldn't begin to do on dry land because of balance issues and muscles tiring really easily.

Loretogirl · 13-10-2014 11:37am

Ash23, where do you do you aqua aerobics I also have problems with balance and muscle weakness. I am in Dublin and heard there is a pool in Terenure that is said to be good for people with walking problems. Has anyone used this.

ash23 · 13-10-2014 11:43am

Loretogirl wrote: »

Ash23, where do you do you aqua aerobics I also have problems with balance and muscle weakness. I am in Dublin and heard there is a pool in Terenure that is said to be good for people with walking problems. Has anyone used this.

I'm in the west of Ireland. I just go to the class at the local pool. They had an offer on for gym membership. They're fine with me using the pool but I've to get a letter from my GP before they'll let me in the gym

I'm hoping to start off with the swimming and aqua fit class and in time start in the gym building up strength etc. I know I can't do a lot or I'll fall over or my leg will get tingly and weak so I'm hoping they can help me with some strengthening and non impact exercise and I'll use the pool for my cardio.

outnumbered82 · 13-10-2014 10:00pm

I swim 3 times a week I'm a member of a gym, I can do so much more in the pool then I can on a tread mill or machine. I also do Pilates which is really good for balance and core.

Sparkles79 · 18-10-2014 10:48am

Hello everyone. Does anyone else get the 'bear hug'? since August I've been plagued with it..to the point where it's always there and seems to worsen when I'm very fatigued ie: afternoons and late evening.
I'm overly sensitive to neurontin and Lyrica so these aren't options for me. Nurofen and paracetamol don't touch it, so I'm kind of left with no painkiller and in constant pain.

Does anyone have any advice for getting relief from it? I do the obvious things but any suggestions would be much appreciated as I'm finding it all a bit tough at the moment. x

fergal.b · 18-10-2014 12:30pm

Sparkles79 wrote: »

Hello everyone. Does anyone else get the 'bear hug'? since August I've been plagued with it..to the point where it's always there and seems to worsen when I'm very fatigued ie: afternoons and late evening.
I'm overly sensitive to neurontin and Lyrica so these aren't options for me. Nurofen and paracetamol don't touch it, so I'm kind of left with no painkiller and in constant pain.
Does anyone have any advice for getting relief from it? I do the obvious things but any suggestions would be much appreciated as I'm finding it all a bit tough at the moment. x

My wife suffered a lot with these bear hugs or MS hugs she was put on LDN "low dose naltrexone" and since has had no problem with them

.

byhookorbycrook · 19-10-2014 5:58pm

I get the hug most of the time, stretching helps, as does a heat pack.

Sparkles79 · 19-10-2014 6:00pm

Hey Fergal
I mentioned LDN to my neuro 2 years ago and he point blank refused to prescribe it.

I'm on Tysabri infusions, do you know if the two can be taken together? I just looked it up and apparently a GP can prescribe it too...so maybe I could go down that route.
Whoever thought of the name 'Hug' for this God awful pain must have been having a laugh! I doubt a boa constrictor's prey would say they were 'hugged' to death!?

byhookorbycrook · 19-10-2014 9:22pm

Not every gp is willing to write a script for it. Am on Tysabri too, but can't say. Oh yes, a hug is not the right name, severe pain would be more like it. Voltarol gel is good too.

fergal.b · 20-10-2014 10:09am

We also got a cool memory foam mattress topper and a chillow that seems to help. Sorry about the LDN it seems to work for a lot of people maybe as word spreads it will become more available.

.

Sparkles79 · 22-10-2014 8:02pm

I was seen this week and have to have steroids

Relapsing. .again! A few medications were tweaked and I was also prescribed Tegretol. Does anyone else take this for pain?
Sparkles x

byhookorbycrook · 22-10-2014 9:18pm

I took Tegretol when I was on betaferon but it caused liver function issues. I'm now on gabapentin. Féck to relapse. Hope steroids kick in asap.

Aurora Borealis · 02-11-2014 11:48pm

Any advice fellow MSers on where to go for life insurance cover? I'm very clueless about it all and am trying to research it before I apply for a mortgage. Or maybe I should start a separate thread?

Thanks in advance!

TouchingVirus · 06-11-2014 1:17am

My mam will be diagnosed officially with it next Tuesday by her neuro but her cancer surgeon let the cat out of the bag two days ago in a meeting that that's why she's had some numbness the past two months and they put her on IV & oral Prednisone last month. I've just read this thread from start to finish and I'd like to say thanks to all the contributors who've spurned me to look at various bits and bobs about MS.

byhookorbycrook · 06-11-2014 5:36pm

Sorry to hear about your mam, let us know if you want any further information.

Sparkles79 · 10-11-2014 5:27pm

Sorry to hear about your Mam..she seems to have enough on her plate already. sending a hug x

eimsRV · 21-11-2014 2:03am

Evening all,

I've been reading through the posts over the past few weeks.

I'm a 35 year old female, I started experiencing symptoms in September of this year and after a stay in hospital the neurologist is sure I have MS but just waiting on lumbar puncture result before starting on first line treatment.

My initial symptoms were numbness in my left hand which over two days spread to my left side. This lasted a few weeks and I also had about 5 days of the hug!
After about a month my right side started being v sensitive to hot and cold and even now this is the symptom that effects me the most as it is constant. The numbness in my left has subsided.
In early October I started suffering unbearable pain in my neck and back of my head. I went to my gp who has just received my mri results from euro medic which confirmed I had lesions in my cervical spine, and some smaller lesions in my brain. GP immediately advised I go to a&e so I went to Beaumount where I was admitted for a week. They put me on 4 days of steroids and performed the required tests. (Lumbar puncture, chest X-rays, blood tests). I also attended physio and met the MS nurse.

At the moment I'm on Lyrica. In December or January I'll start the injections, at this point I'm thinking of betaferon but need to see if consultant agrees.

Sorry for the long post but hope it serves as an intro

:-)

Closov · 21-11-2014 9:05am

Welcome eimsRV, sounds like you've had a rough few months and it's going to be a pretty quick diagnosis, it must be only barely sinking in? If you haven't already, register with your local ms society office, personally I found them better than any GPs or consultants so far. A few weeks delay on starting the dmds won't do any harm. It won't make Xmas better, but it could make it worse, speaking from my own (bad) experience last year. Good luck

eimsRV · 21-11-2014 10:58am

Thanks Closov. Yea its all happened very quickly, I'd had some symptoms in the past like numb legs but never thought anything of it.
I've looked at the MS Society site but haven't contacted them, I'll do that now - thanks for the tip

byhookorbycrook · 21-11-2014 8:26pm

Any of the injectables don't work as well as Tysabri, but I think it's not yet offered as a 1st line treatment here. Worth asking about, though.

eimsRV · 22-11-2014 12:53am

byhookorbycrook wrote: »

Any of the injectables don't work as well as Tysabri, but I think it's not yet offered as a 1st line treatment here. Worth asking about, though.

Thanks, I did mention it to the MS nurse and she said that the consultant hadn't asked her to discuss Tysabri with me, she said in her experience people are put on Tysabri if one of the other treatments isn't effective any more. Is Tysabri a treatment that you can stay on for years?
I will ask the consultant when I'm back in clinic in December.

BohToffee · 22-11-2014 1:34am

Evening all, has anyone experience getting a medical card due to the condition? Or fir those less mobile who may require use of a chair, is it poasible to get a mobility travel pass??

Sparkles79 · 24-11-2014 3:53pm

Has anyone ever had steroids and not found any benefit from them? I had them 2 weeks ago and haven't felt that 'duracell bunny' surge of energy yet. I feel the same to be honest and it's very different from the other times I've had them.
My neuro was querying whether or not my MS had moved from R&R to a more progressive form at the beginning of this year but he decided to give me another year as he wasn't certain. This has me a bit worried tbh. ðŸ˜•

byhookorbycrook · 25-11-2014 8:21pm

Any time I had steroids, I got the munchies and then came out of a relapse a bit quicker. What treatment are you on again, Sparkles?

Sparkles79 · 25-11-2014 9:32pm

Hi there! Tysabri. I thought it would make me feel brighter and give me more energy like they usually do, I just feel the same though.

byhookorbycrook · 25-11-2014 9:34pm

I see some people on Facebook groups claiming all kinds of things. For me, being relapse free is huge thing. Is your neuro thinking of taking you off it??

Salmotrutta · 25-11-2014 10:03pm

Thought I'd post something positive

Just watched this, very inspiring short (12 min) film about a high school MSer in the US who won her state middle distance running championship, although she can't feel her legs when she runs, and collapses at the finish unable to walk. Makes me more determined than ever to stay active and do a few more challenges next year. I'm newly diagnosed so haven't lost any mobility yet, and am determined to do everything I can to keep it that way.

Put the old http:\\ before the youtu.be/kpA-FsKLA6A (can't post links as I don't have enough posts)

Sparkles79 · 25-11-2014 10:04pm

No, he wants me to stay on it. I really don't find any benefit from it, I've been on it for nearly 2 years. I haven't got any worse though either, so it must be doing something.

MS in all its glory

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