MS in all its glory

Agenda

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

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

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

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

Sparkles79

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

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

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

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

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

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

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

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!😉
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

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

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.:(





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ash23

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

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. ☺

Sparkles79

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

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

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

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

Thanks

fergal.b

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.




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byhookorbycrook

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

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

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

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

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

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

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



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byhookorbycrook

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

Sparkles79

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!?