MS in all its glory

byhookorbycrook · 09-01-2012 11:57pm

Berocca helps me,as does taking vit B,d and omega oils.

outnumbered82 · 26-01-2012 11:54pm

Starting on Amantadine 2m for fatigue has anyone else taken this?

Animord · 25-02-2012 10:46am

Hi, I am not a sufferer myself, but my close friend was diagnosed last year.

Earlier in the thread someone mentioned Dr Terry Wahls and her diet for MS - I see no one replied to it and just wondered if anyone here had actually tried using her methods?

bizmark · 25-02-2012 4:56pm

little worried that i havent had any meds since before november at this point and will still have to wait till April to even see the neuro tiny bit sick of the constant weakness in the right side of my face and body at this stage as well been nearly a year constant would really like to believe it will go away and stop effecting my breathing and eye but loseing hope at this stage oh wells onwards

ElleEm · 27-02-2012 1:58pm

bizmark wrote: »

little worried that i havent had any meds since before november at this point and will still have to wait till April to even see the neuro tiny bit sick of the constant weakness in the right side of my face and body at this stage as well been nearly a year constant would really like to believe it will go away and stop effecting my breathing and eye but loseing hope at this stage oh wells onwards

Hopefully they'll find you meds that work for you.

I have been relapse free since my first symptoms at diagnosis. That lasted for a few months but I am grand now. Few blips here and there but nothing majorr. Doesn't stop the fear of waking up broken any day though.

outnumbered82 · 03-03-2012 12:23am

Does anyone else get a slight onset of symptons when they are tired or run down? I seem to get a pain in my eye when im tired i had optic neuritis a few months ago.

byhookorbycrook · 03-03-2012 12:30pm

Things always worse when I'm tired, too hot or too cold.Any kind of infection doesn't help either.

hdunne · 16-03-2012 10:54pm

just heard that NICE in the UK has approved Gilenya so fingers crossed Ireland will follow suit. I started on this tablet this week and no side effects. I got this from drug company on compassionate grounds. i hope to have many months/years ahead relapse free, i came off betaferon last year to move to either tysabri or gilenya, happy i got tablet and it looks like will be approved soon.

val444 · 07-04-2012 8:04pm

Hi all,

Strange question, again! Several people over the past couple of weeks have commented about my eyes looking strange. I have now begun to notice it myself. Basically, my pupils seem to be two different sizes. This is worse in the morning. I googled it, as I do everything, and it seems that this happens to people who have experienced optical neuritis.

My eyesight has been absolutely fine, and I haven't noticed anything else. My VEP last summer showed nothing on my optical nerve. Has this happened to anyone else? I am due for an MRI in May anyway, so am not panicking, but I find it strange that I could have the aftermath of Optical Neuritis, with none of the symptoms?

Thanks!

byhookorbycrook · 07-04-2012 11:20pm

Val, haven't had anything optical, but I'd mention it to your neuro anyhow.
I know three people have started gillenya from our Tysabri group.Hopefully we will see it extended to others.

val444 · 08-04-2012 12:52am

byhookorbycrook wrote: »

Val, haven't had anything optical, but I'd mention it to your neuro anyhow.
I know three people have started gillenya from our Tysabri group.Hopefully we will see it extended to others.

Thanks for your response.

In regard to Gilenya, I have read a good few articles which seem to suggest that it might be unsafe? I think I would prefer to wait and see it proven first. I don't find the injections too bad and hopefully I will soon find out if they are working!

byhookorbycrook · 08-04-2012 9:51am

Gillenya has been associated with some cardiac deaths, but neuro says the number is not significant. Betaferon was associated with some skin cancr deaths, but again not significant. Each of our disease modifying drugs can have serious side effects, so it's always going to be a risk .

val444 · 08-04-2012 7:48pm

Yeah, I get that, and I can imagine that some people are very anxious to stop injecting themselves.

We shall see. I am going to stick with Copaxone for now anyway, I have been very lucky, long may it continue!

outnumbered82 · 11-04-2012 10:19pm

Im due back for my first review in 2 weeks im wondering what i need to do for it? Do i need to get bloods or any tests done?

byhookorbycrook · 12-04-2012 12:13pm

Review with neuro?What meds are you on?When I was on betaferon I had liver function tests done every 6 months, through the gp.

IM0 · 12-04-2012 3:22pm

you just turn up. they organise anything they would like from you

outnumbered82 · 12-04-2012 4:43pm

yea im going back to the neuro,Im on rebif ive had 2 blood tests in last 9 months so will go and get another one if they want any thing else im sure they'll soon let me know

pbarr · 12-04-2012 6:15pm

I notice the majority of posts here seem to be about the relapsing type of ms. Has anyone here got the primary progressive form of ms. I was diagnosed just over 2 years ago and since then after being through 3 different neuros none of them have proposed any medication for my condition despite it having progressed to me having to use 2 crutches to move around and a wheelchair for longer distances.
The only thing I did have was a course of iv steroids a year ago but any benefit from those are short lived.
Has anybody else found things the same as what I have which I can only describe as neglect by the medical profession.

byhookorbycrook · 12-04-2012 9:10pm

Pbarr, sorry to hear your needs are not being met. My neuro is fantastic. (Munster based)I know of one person on Prim. Progressive who is on LDN, but that's the only experience I have of it.

pbarr · 12-04-2012 10:03pm

I did try the ldn way back but stopped it because I didn't think it was helping any.

byhookorbycrook · 12-04-2012 11:01pm

Has your current neuro any suggestions?

pbarr · 12-04-2012 11:15pm

Only saw her for about 2 minutes at th clinic in Beaumont 2 months ago no mention of any meds at all I'm trying to get a private appointment with her at the moment.

coughdrops · 16-04-2012 10:37pm

Hi guys

I was diagnosed with MS in 2010, hope you don't mind me joining in. My diagnosis came after 2 years of being ridiculously tired- if I wasn't working I was sleeping, and symptoms that with hindsight were flagging MS at me for a long time.

It all came to a head May 2010 when I traipsed in and out to my GP over the space of 3 weeks with a list of symptoms, pain in my neck, numb from top of head down RHS to my fingers, loss of use in my hand, numb legs. Initially we thought it was a trapped nerve, and after a week on anti-inflammatories (which I ended up allergic to :rolleyes: ) with no improvements I was sent on to a neurologist.

I got diagnosed via MRI, and afer 3 days on IV steroids my symptoms subsided pretty quickly. I am now on Copaxone, and have been taking it without any real problems since Feb 11. I get some bad site reactions occasionally, but not all the time. I had been on Rebif for a couple of months before Copaxone, but it didn't agree with me at all. Once I got used to the daily jabs, I've found Copaxone has fitted in ok with my life.

Anyway, that's my story in a nutshell. Mostly I do ok. This time of year I seem to feel pretty crap- I don't really know if it is a coincidence, or if symptoms can be cyclical? I've not had a full blown relapse since diagnosis, but some days I feel a bit numb/tingly, and the tiredness comes back. I've been really tired the last 3 weeks, with my left foot and hands annoying me, I am hoping it will pass soon.

Thanks CD x

ElleEm · 17-04-2012 11:41am

coughdrops wrote: »

Hi guys

I was diagnosed with MS in 2010, hope you don't mind me joining in. My diagnosis came after 2 years of being ridiculously tired- if I wasn't working I was sleeping, and symptoms that with hindsight were flagging MS at me for a long time.

It all came to a head May 2010 when I traipsed in and out to my GP over the space of 3 weeks with a list of symptoms, pain in my neck, numb from top of head down RHS to my fingers, loss of use in my hand, numb legs. Initially we thought it was a trapped nerve, and after a week on anti-inflammatories (which I ended up allergic to :rolleyes: ) with no improvements I was sent on to a neurologist.

I got diagnosed via MRI, and afer 3 days on IV steroids my symptoms subsided pretty quickly. I am now on Copaxone, and have been taking it without any real problems since Feb 11. I get some bad site reactions occasionally, but not all the time. I had been on Rebif for a couple of months before Copaxone, but it didn't agree with me at all. Once I got used to the daily jabs, I've found Copaxone has fitted in ok with my life.

Anyway, that's my story in a nutshell. Mostly I do ok. This time of year I seem to feel pretty crap- I don't really know if it is a coincidence, or if symptoms can be cyclical? I've not had a full blown relapse since diagnosis, but some days I feel a bit numb/tingly, and the tiredness comes back. I've been really tired the last 3 weeks, with my left foot and hands annoying me, I am hoping it will pass soon.

Thanks CD x

Welcome, CD. Your story is very similar to mine, diagnosed in 2010, on Copaxone and similar symptoms. I'm fine at the minute though, which is great but it doesn't stop the fear that I may not be some day soon!

coughdrops · 17-04-2012 4:42pm

Thanks ElleEm, I'm a bit better today. Hoping the tiredness passes soon, as it's a killer!

ElleEm · 17-04-2012 4:49pm

coughdrops wrote: »

Thanks ElleEm, I'm a bit better today. Hoping the tiredness passes soon, as it's a killer!

I know. I remember quite recently crying in the kitchen cos I was just too tired to move. I needed to wash the dishes but was so so exhausted. Sometimes the tiredness is just inexplicable, but you have to ride it out.

coughdrops · 17-04-2012 6:07pm

I've had that cry! Sometimes it's a wave of tiredness, followed by tears (and the odd tantrum

) of frustration. Couldn't get my boot off the other day but my DH took it all in his stride. He's well used to me by now, the poor sod

byhookorbycrook · 17-04-2012 7:19pm

welcome to our little club, Coghdrops!

sqooka · 22-04-2012 10:54pm

A lot of people have mentioned the need to inform your car insurer in case they try to weasel out of paying for an accident, but what I was wondering is how they might find out? I realise that it make me seem incredibly dishonest, but the circumstances surrounding my diagnosis were a little unusual to say the least.....("amazing" to quote what the doctor mumbled through his surprise at my follow-up appointment)

byhookorbycrook · 22-04-2012 10:58pm

If you look at the small print it usually has something about conditions you need to inform them of. I really would suggest you get the letter from the neuro to say you are fit to drive and send it in,follow up with a phonecall.

The bit I was going to add:
Just to give you an idea of how insurance will weasel out:I know of a case where someone with a horsebox was in an accident in the middle of the day.Apparently one of the lights on the box was broken, even though it wasn't needed during the day, insurance said box not roadworthy and wouldn't cough up.

MS in all its glory

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