MS in all its glory

Claire22Cork

Hi everyone, any of you on Fampyra?
I'm on 2nd month of trial, its making such a difference to my walk and balance, delighted however it has caused two UTIs since I started - at least I'm assuming its the Fampyra, I'm not prone to them.
Would love to hear how anyone else finds it. I've been told my neuro nurse that Fampyra is unlikely to get funding / approval, which is crazy if it can make such a difference to a patient's lifestyle!!

byhookorbycrook

I'm on it since Feb, a lot looser and not at all as sore. Haven't had an UTIs since starting ,got a good few when I started on Tysabri, though.

byhookorbycrook

Answered on the other thread. I'm JC+ too, but staying put until Campath comes on stream.

Paddy James

byhookorbycrook wrote: »

When you say IV do you mean steroids?

Sorry yes steriods

ash23

Having a bad day. Had awful dreams last night about the MS and how I was going to be horribly disabled because two lesions were about to cut off my spinal cord at the neck. Woke up feeling thoroughly depressed.

Finished the steroids but the optic neuritis is still present although my cold/dose is gone. The sight is a little bit better but really would feel a whole lot better and reassured if it would just go away now.
I really just couldn't handle another relapse at the moment. Financially or emotionally.

tatumkelly

ash23 wrote: »

Having a bad day. Had awful dreams last night about the MS and how I was going to be horribly disabled because two lesions were about to cut off my spinal cord at the neck. Woke up feeling thoroughly depressed.

Finished the steroids but the optic neuritis is still present although my cold/dose is gone. The sight is a little bit better but really would feel a whole lot better and reassured if it would just go away now.
I really just couldn't handle another relapse at the moment. Financially or emotionally.

I find the ON really tough to deal with, though I am only recently diagnosed so maybe it's the diagnosis in general/the unfairness of it etc that I'm really battling with. I guess the only thing you can do is focus on the positives in your life, and that'll help keep your spirits up

As for the dreams, I guess that's your subconscious highlighting that you're stressed. Stress doesn't help your body, and will have a knock on effect on your relapses so try to relax. How's your diet overall? Diet plays a pretty key role in our mood, so it might be worth looking at to make sure you're giving your body the correct fuel it needs.

discobeaker

Had my 2 month check up with the copaxone nurse today. She is well happy with how im getting on with it and answered any questions i had. She said that it will be about 6 months on the treatment until i feel any real difference but im having more good days than bad one lately so im happy enough just wish this feckin weather would get abit warmer

byhookorbycrook

Bar the Fampyra, none of the drugs I take/have taken made me feel better. I don't think the Copaxone nurse could really back up the claim that it will make you feel better, tbh.

ash23

I'm 3 months on Copaxone and can't say it's made me feel any different. That was never a claim the neuro or the consultant made.
It just reduces relapses but it doesn't make you feel better or worse as far as I know.


My eye is still being bothersome. The illness is gone so I'm assuming this is another relapse. Sigh.

byhookorbycrook

Ash, how long ago did it start to cause issues? It could be residual damage or just slow to heal.

ash23

byhookorbycrook wrote: »

Ash, how long ago did it start to cause issues? It could be residual damage or just slow to heal.

Just under 2 weeks ago. I spoke to the ms nurse and she said I should go to opticians or gp. But they'll just send me to hospital. I just had iv steroids last month so she said they'd hold off giving them again.

So I'm just going to leave it and see. If it gets bad I'll go to the gp but waiting a little while won't really make much difference.

byhookorbycrook

Could be the tail end of a relapse so or if you have any kind of infection etc, that can make symptom worse.

ash23

Hello all. Hope everyone had a good Easter.
My sight is getting slightly worse every day (only in one eye thankfully) but I think I have to accept that this is a relapse as opposed to just a flare from being sick as it's 3 weeks now since I had the dose.

Annoying as I really had hoped to get more of a break from relapses. I had one (numb leg and arm) from October to February and now this right on top of it.

Also makes me worry slightly that the Copaxone isn't working for me. I know it's too early to really be able to tell but it's been a bit of a disappointment. Not sure if it counts as a separate relapse as I had the same in September and October but it went away, flared for a day or two in February and went again but is back now for sure.
Just wait and see I guess.

byhookorbycrook

Blast, would you consider Tysabri? It is being offered more widely now. I haven't had a relapse since I started on it in Jan 2009.

ash23

I would say I'd need to give the copaxone a bit longer. I was told it would reduce my relapses by a third. I had 4 relapses last year. So I think I'll give it a year and see what way the relapses are then before thinking about changing. I've a Neuro appointment in July so I'll know better then I'd say as to whether the copaxone is working for me.

discobeaker

Hi Ash

I was told by the Copaxone nurse last week that it takes about 6 months for your body to get used to the injections so maybe give it till then before you switch.

Also ive been looking into LDN.... anyone any advice about it? From reading up it can be used with Copaxone no problem,it gives you weird dreams but apart from that there are no side effects. Was talking to a guy at an MS meet up,organised by Emma from the MS society, who is on it afew years and he has good things to say about it.

byhookorbycrook

LDN has no research to support it as it is so cheap to produce, have heard mixed reports.

discobeaker

Yeah from reading about it it does seem to be kinda up in the air if it actually does do anything or if it just more like a placebo. They have done short trials,i think it was 8 weeks or something in America and there is one happening or has happened in Italy but like you say it is very cheap to manufacture so they wont put alot of money into research.

The guy at the MS meet up has been on LND for 3 years or so and he swears that its doing him good and said i should look into it. Just wondering if anyone here had tried it

outnumbered82

Hi everyone hope your all doing well. Was at the doctor today and he did a blood pressure test and it was high 140!95 when I was leaving he did it again and it was the same. Does any one else suffer high blood pressure can it be ms related. He has sent me to get the blood pressure monitor put on for 24 hours.

coughdrops

Hi Outnumbered82

My BP has always been normal, although most of my family have high BP (not sure if it's genetic?). They've worn the 24 hr monitors in the past. Were you stressed/nervous going to the doc, as that can elevate it? Hopefully it's just a temporary glitch and the monitor won't show anything too bad. I've not heard of any connection between MS and BP

My problem is high Cholesterol, which I am trying to get down, but due back for bloods soon and I don't think I've done enough to reduce it significantly. Can't blame MS for that one, instead it's from just being a piggy.

byhookorbycrook

My bp is normal. Haven't heard of high bp being linked to MS, but that doesn't mean it's not.

Knocknarea

Hi Outnumbered82

I have had problems with high BP and palpitations in recent months. I was diagnosed with MS about 14 months ago and started having problems the palpations last summer. Had the heart monitor etc and waiting to see the cardiac people. I am convinced it the MS drug I am on but the neuro and cardiac people are treating it separately (which is good I suppose). Just had my 3rd relapse so will be changing drugs anyway, meeting my neuro next week. So a bit up in the air for me anyway, should see your GP and to ensure its checked out.

I try and not put everything down to MS but everything seems to have gone to pot in the last year, between eye specialist for optic neuritis, the neuro and cardio I am on first name basis with the car park attendant at the hospital!

ash23

My BP is normal but I do get a lot of heart palpitations but my pulse is normal. Not sure if it's just anxiety since the diagnosis but it's gotten worse since I was diagnosed.
I avoid caffeine and that seems to help.

val444

Hi all,

It has been forever since I last posted, how is everyone? When I last posted, I was in hospital with pneumonia and ended up returning to the hospital for a week or so again and again for a couple of months. All in all, I think I was sick for more than three months and I am still not entirely well!

Interestingly, though Copaxone cannot be blamed for my coming down with pneumonia in the first place, between the consultants I saw, they have agreed that Copaxone is the reason it lingered. I thought I had kicked pneumonia after my first ten day stint in hospital but because I was still so immuno-suppressed from Copaxone, the pneumonia came back again and again.

I am now off Copaxone since January and plan to stay off it. The neurologist had decided that it wasn't working for me anyway and we had planned to try Tysabri next. I changed my mind about this though and decided to try for a baby instead! We were gonna wait 12 months but as I was off Copaxone anyway while sick, the 90 day break you need to take had kinda happened already, so we are seizing the opportunity!

I am trying not to panic about not being on any medications at the moment and I am also battling with feelings of selfishness about wanting a baby. On balance though, I feel we are making the right decision.

coughdrops

Hi val444

Would you believe I was just thinking about you over the weekend? I am officially coming off Copaxone at the end of this month to start trying for a baby. I am both excited and scared witless, but hopefully it will all go ok. My main fear is it takes ages to conceive and that I'll be off meds for longer than I anticipated. But, what can you do? You just have to get on with it!

Interesting to hear that the Copaxone caused your pneumonia to linger, God we could be here forever learning new things about MS and the meds! Hope you're well on the way to recovery now, it's been a long few months for you.

CD

ash23

Sorry to hear you've been unwell Val. That's interesting about the Copaxone because I spoke to my neurologist about that when I was deciding which drug to take and he said that Copaxone doesn't suppress your immune system, it just modifies it.
I've been on it since December and haven't picked up any doses in the office like everyone else did. Got a bit of a sore throat but was better within a day or two.

Unfortunately though the Copaxone doesn't seem to really be doing it for me as of yet. Still relapsing left, right and centre

Congrats on the decision to start a family. Don't worry about the ifs and buts. Easier said than done, I know. But when I got pregnant I was 19, broke, no career and nowhere to live. Couldn't have been a worse situation to be in. But 11 years on and it all worked out in the end in it's own way.

val444

Hi all,

It's not so much that copaxone makes you more prone to illness, just that it can cause antibiotics to work less efficiently I think. All I know is that the respiratory consultant and the neurologist agreed that if I hadn't been on copaxone, maybe it wouldn't have taken me so long and so many antibiotics to shift the pneumonia. Oh well, lesson learned!

One interesting thing was that when I was admitted to the hospital, they immediately took me off copaxone. Apparently when you are on the really strong iv antibiotics, you shouldn't be on copaxone too. The neurologist said this was rubbish though, as the copaxone stays in your system for ninety days so stopping for antibiotics won't achieve much! I dunno, I was so sick that I was just happy to do what I was told!

Yup, on the long scary road of trying to conceive now. My husband has gone all out with ovulation sticks and a chart. Trust him to make a game of anything! I think he sees it as a personal challenge with little to do with me!

I am scared and excited and all sorts of things. I am an impatient person at the best of times but waiting to get pregnant is gonna kill me. And my MS symptoms are back with a bang so that makes me nervous too! To be fair, I am very lucky and can totally cope with a numb tingly hand.

I wish everyone luck in whatever they want to achieve in life and hope that you will all cross your fingers (those that can!) so that we can all get knocked up nice and quickly if that is what we desire! And it so is...

moihugs

Hi everyone,
Im posting this for my husband who has ms 20 years but has got worse over the last yr or 2! He is now thinking of looking about getting the primary medical cert. Has any of you looked about this or how hard is it to get for someone with ms?

pbarr

moihugs wrote: »

Hi everyone,
Im posting this for my husband who has ms 20 years but has got worse over the last yr or 2! He is now thinking of looking about getting the primary medical cert. Has any of you looked about this or how hard is it to get for someone with ms?

PM sent

outnumbered82

I have my second out patients appointment this week. I dont know what to ask. Nothing major has happened just the usual tiredness, numb leg, eye pain but none of which lasted to long or seemed bad. I don't want to go wait 2hrs to see someone 10 minutes to come away with nothing. What are the usual questions you should ask?