MS in all its glory

byhookorbycrook · 07-08-2015 11:38pm

Airportrambler wrote: »

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.

I use Fampyra ang it definitely help with legs , makes them less heavy.

As to thinking constantly about your MS, a lot depends on yourself. Keeping busy is important, as does a positive outlook, but it's natural to over think things when you are first diagnosed.

Airportrambler · 08-08-2015 7:14pm

byhookorbycrook wrote: »

I use Fampyra ang it definitely help with legs , makes them less heavy.

As to thinking constantly about your MS, a lot depends on yourself. Keeping busy is important, as does a positive outlook, but it's natural to over think things when you are first diagnosed.

So I have a hope that it will ends after some time...

By the way I have another question ( sorry go being annoyed but I do not know anybody in the same situation as me as I do not want to joyn any of support group)
Friend of mine who is a doctor herself advising me yo move from Beacon to St.Vincent as they have a lot of services and consultants are dedicated to MS. Where are you being treated in Dublin? It would be good to hear some advise.
Thanks

byhookorbycrook · 10-08-2015 7:03pm

I get my treatment in Tralee. I would imagine it would be better to be somewhere like Vincent's rather than the Beacon as there would be a wider range of services, but others may have other views.

Sunny Dayz · 11-08-2015 10:39am

Husband is starting on Gileyna tomorrow. I'd be lying if I said I wasn't worried or nervous for him. I suppose it will make things feel more real to me. He was diagnosed last December, symptoms started in Nov with steroid treatments in Nov & Dec and has been ok since then. He put off starting the medication until now as we had quite a lot on this year and he wanted to be on form for everything.

Airportrambler · 11-08-2015 10:51am

byhookorbycrook wrote: »

I get my treatment in Tralee. I would imagine it would be better to be somewhere like Vincent's rather than the Beacon as there would be a wider range of services, but others may have other views.

I would like to hear the others as well ... I am little bit confused.

Salmotrutta · 11-08-2015 3:49pm

Sunny Dayz wrote: »

Husband is starting on Gileyna tomorrow. I'd be lying if I said I wasn't worried or nervous for him. I suppose it will make things feel more real to me. He was diagnosed last December, symptoms started in Nov with steroid treatments in Nov & Dec and has been ok since then. He put off starting the medication until now as we had quite a lot on this year and he wanted to be on form for everything.

He should be absolutely fine. They'll be monitoring his heartrate the whole time, most people just drop a little and then back to normal. I've been on it a year now with absolutely no problems or side effects. The MS nurses in the hospital I attend said they'd heard of very few side effects and that it had a very good effect on relapse rate. He's a lot better on it than off it!

byhookorbycrook · 11-08-2015 9:47pm

Sunny Dayz, it has been proven that people who start disease modifying drugs at an early stage have a better outlook. Our neuro says she rarely sees really bad MS-ers since the DMDs we have now came on board . And there new meds all the time coming onstream.

Sunny Dayz · 11-08-2015 10:49pm

Thanks all. I know he will be fine, and we are lucky he has been grand since diagnosis, plenty of times I forget about it! It's just nervousness.

Leogirl · 14-08-2015 5:31pm

Hi all.

Been a while since I posted here. Ms has taken a back seat due to pregnancy+ acute sciatica.

Anyway I'm now almost 35 weeks+ the hospital have started to talk about after the birth+ the ms. I always knew there's a high risk of a relapse after but kinda pushed it to the back of my mind. So I'm just wondering how other women fared after delivery. Any advice on how to maybe avoid relapse? How was the while experience for you- pregnancy, delivery, afterwards etc? It's been a dream pregnancy apart from sciatica (which was not actually pregnancy related)+ I am hoping I might breastfeed so that means delaying medication.

Any advice would be welcome, thanks :-)

byhookorbycrook · 14-08-2015 7:57pm

Congrats on impending babs! I think neuro would be the best port of call re post pregnancy relapses.

Leogirl · 14-08-2015 11:14pm

I know I need to go to Beaumont but I would just like to hear how others got on. Did fatigue really hit hard after, Were they doing well through pregnancy etc. I don't think I'll get to Beaumont - I've 5 weeks left+ the thoughts of sitting there for hours is just torture!! Guess I've been happy to push ms aside for a few months, symptom free since a relapse just before getting pregnant. I wanted to ignore it but now obstetricians are mentioning it again :-(

nannycoll3 · 15-08-2015 8:26pm

Anyone out there on fampyra for m.s! There is a pharmacy in leixlip where you can buy it for 200euro a month...2 tabs daily.

byhookorbycrook · 16-08-2015 8:25pm

I pay 270 for my Fampyra, which is cost price. I couldn't be without it, it seems funding is a bit closer, we have been campaigning hard.

byhookorbycrook · 16-08-2015 8:27pm

Worth mentioning that the 2 tabs must be taken 12 hours apart, see the alarm on your phone!

embee · 19-08-2015 3:18pm

Hi folks!

Gave had an absolutely horrendous month. Am in getting steroids again (only got a course of them three weeks ago) and have had a severe disabling relapse, ability to walk was completely gone for a few days. Was initially having to be hoisted in and out of bed but am mobilising with a frame now, got very bad very quickly and was unable to even stand on my own two feet. I've had four days of steroids and got my first tysabri infusion yesterday. Am having physio and occupational therapy and hoping for home on Friday, it's been horrendous but am feeling like hopefully this tysabri will help me turn the corner!

byhookorbycrook · 19-08-2015 7:02pm

That's horrible, Embee, damn scary too. I have never relapsed on Tysabri and apart from Lemtrada (which is only starting to come here) Tysabri is the most effective dmd there is . The sooner you get it, the better.

Salmotrutta · 19-08-2015 11:19pm

Sorry to hear that embee, hopefully the steroids kick in soon and you start feeling better. Getting on Tysabri should make a huge difference too. Best of luck, thinking of you...

byhookorbycrook · 26-08-2015 7:08pm

Get that Vitamin D into you!
http://www.theguardian.com/society/2015/aug/25/lack-vitamin-d-cause-multiple-sclerosis-study

embee · 27-08-2015 3:07pm

So I'm home from hospital and still feeling poxy. Balance is off, legs remain weak and wobbly and using a zimmerframe to get around. Sleeping loads and when I'm not asleep I'm sitting in the armchair. As a result I have oedema in the ankles and lower legs, probably from pure inactivity. Am elevating them as much as possible but my feet feel tight, I think this oedema is contributing to my wobbling as the tightness from the oedema is causing some of this numbness in my feet and I can't feel them hitting the ground terribly well. Does anyone else have this issue and if do, how do you deal with it?

BohToffee · 29-08-2015 9:45pm

Airportrambler, I have family in the med profession and my wife was advised to go to Vincent's soon after diagnosis... Things went awry and we eventually went for a second opinion on PPMS a number of years ago, they are great in SVUH, not to say anything bad about other hospitals but they are great.

Was told recently that things may be different had we went there earlier, hindsight and all that but that's my tuppence worth.

byhookorbycrook · 29-08-2015 10:12pm

Embee , how are you doing now?

embee · 30-08-2015 11:10pm

Bah, ****e in some ways. Can't walk unaided and am alternating between wheelchair and zimmer frame. Have really bad oedema in my ankles and lower legs which is hampering the walking considerably. Second tysabri not til September 15th, really hoping it'll be the treatment that works for me. Fed up of this all at this stage. Can't drive anywhere, wee girl starting back to school in the morning so jumping through hoops galore to get her there.

byhookorbycrook · 31-08-2015 8:54pm

It must be very tough, especially with the smallie. I can only tell you that Ty has been incredible for me, hoping it will work magic for you too.

Blinder · 31-08-2015 9:50pm

How are they treating the oedema Embee?
Hope things start to turn around for you soon. You have had a hard time of it.

byhookorbycrook · 02-09-2015 7:14pm

Whoo feckin' hooo, it seems Fampyra will be funded for those who need it!

embee · 02-09-2015 10:06pm

Oedema being dealt with by wearing compression stockings and elevating the legs. Doctor reluctant to prescribe diuretics unless absolutely necessary. They're puffy as hell tonight and driving me mad

byhookorbycrook · 02-09-2015 10:16pm

Ah feck, neuro any use?

Big C · 03-09-2015 10:33pm

Just listening about Fampyra, secondary progressive, not walked in about a year, still standing, anyone similar on Fampyra, pm or here would be great to hear from ya

byhookorbycrook · 04-09-2015 7:35pm

I'm not secondary but I know https://www.facebook.com/givemymumhermeds?fref=ts is.

Loretogirl · 07-09-2015 2:02pm

Who will decide if you are suitable for Fampyra, hospital, doctor MS nurse?

Will you have to have special tests carried out.

When will this scheme begin. Doctor told me the end of the year, TV reported 1/2 months.

Thanks

MS in all its glory

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