MS in all its glory

pbarr

I found my my legs weaker this past few days. Its PPMS I have and mobility isn't great anyway but I took it to be the high temperatures(hopefully) that was the cause.

coughdrops

seems like we're all in the same boat.

My left leg is dragging a bit, and my balance isn't great. My hands are worse though, they're tingling and cramping and generally sore and awkward. I couldn't use my knife & fork for dinner last night, ended up eating with my fingers. The fatigue is bad, and I just kinda ache all over.

@barrackali - Niall Tubridy diagnosed my MS. I like him, he's v straightforward to deal with.

val444

Hi all,

I am just finished my third round of IV steroids in 13 months. I didn't find them as hard to cope with this time round but I also don't feel like they are yet to make much difference. I am loving the good weather and refusing to complain about it but part of me is really hanging on to the idea that as soon as it cools, my recent glut of symptoms will naturally fade.

I am off all DMTs since January as mentioned before. I had thought I was getting away with it until the last few weeks! Visited my neurologist who said that as supportive as she is about me having a baby, I have until September to get pregnant! Talk about putting pressure on it!

coughdrops

Gosh Val, that's not what you want to hear. It's hard enough without added timeline from Neuro. FX you get pregnant soon. What happens when you get to Sept?
I've been off DMTs since end of April, and hoping that the way I am feeling at the moment is because of the heat rather than coming off the meds. Really feel added pressure to get pregnant sooner rather than later...

val444

Hi Coughdrops,

She is really urging me to try Tysabri next. I can't start Gilenya because I have such low blood pressure. It always freaks them out when I am in hospital, the highest it has ever been is 90/53, even when I had pneumonia earlier this year!

While she agreed that I could come off DMTs to try for a baby, she is now making the argument that it might be best to gain control of my MS first and when I feel balanced and happy on Tysabri, come off and try. I am only 27 and so she keeps telling me I am young.

However, my MS symptoms are okay. Even at their worst, I still went to work everyday and led my life just the same. My husband and I want a baby so badly and so I am really hoping that I get knocked up soon and the decision is taken out of my hands!!!

Knocknarea

Ok so I jinked myself, what I was atributing to the hot weather is in fact a replapse, full blown Optic Nuritis and a numb foot. Day 1 of Iv steriods today. This is 4th replapse in 18 months (and since diagnosis) just don't know what to do, am usually so full of optimism but finding it hard to dig deep, and of course wide awake on a steriod high and all that to look forward to in coming days, at least agreed I could attend as a day prisoner ! For the infusions. MS can be a large pain in the h*** pardon my French !

Knocknarea

Val444 and coughdrops I am sending you baby dust for babies! I had my babies before diagnosis, but age wasn't on my side 38 on first and 40 on second so i really looked into my cycle, ovulation kits etc, some great information out there. I know all seems a bit clinical but sometimes it's what you gota do and of course it's fun too. Now wonder will I go downstairs on do the ironing?

val444

Knocknarea wrote: »

Val444 and coughdrops I am sending you baby dust for babies! I had my babies before diagnosis, but age wasn't on my side 38 on first and 40 on second so i really looked into my cycle, ovulation kits etc, some great information out there. I know all seems a bit clinical but sometimes it's what you gota do and of course it's fun too. Now wonder will I go downstairs on do the ironing?

Haha, thanks!

My husband has gone mad for ovulation tests, timing, charts, he has almost made a game of it! We also both went through some fertility testing. I didn't wanna be trying for years only to find out there was a reason it wouldn't happen!

LegacyUser

Hi

I am very interested to hear of people's experiences with Gilenya, has it reduced relapses, side effects, energy levels, MRI lesions etc. currently on Avonex but neuro considering Gilenya due to recent relapse rate and MRI lesions. Many thanks

KGJD

I am very interested to hear people's experiences with Gilenya. I am currently on Avonex and neuro wants to change due to recent relapse rate and lesions on MRI. I am very interest to hear experiences with Gilenya including length of time on Gilenya, why the change, relapses since moving to Gilenya, any side effects from taking Gilenya, how MRI was after taking gilenya.... Many thanks

byhookorbycrook

Gillenya is more effective that Avonex or Betaferon or Copaxone.Can't offer any info otherwise though.

mamakitten

Hi I was wondering is anyone on here taking Sativex and if so how do you find it? I know its not available on prescription here in Ireland at the moment but has anyone managed to get around that (legally!) and use it, specifically for pins and needles in feet and hands?

ash23

Had my neuro appointment yesterday and he feels that copaxone is not working for me and it's time to try something else. So a round of bloods, booked in for a brain MRI and then back once that's done to discuss my other options.

It's a bit disheartening to find out that the daily injections have been a waste of time but at least he is being pro-active and not leaving me for another 6 months before he makes a change.

We're now talking about moving me to Gilenya or waiting til the end of the year for the new oral drug, Tecifedra.
I also had the JC blood test although Tasabri isn't where he wants to go yet in terms of treatment.

So I'm a bit disheartened and disappointed to be honest. He explained that the stronger drugs carry more side effects which I had been hoping to avoid by trying Copaxone. I'm also pondering if going on an interferon initially would have been a better choice although the neuro reckons that neither would have worked for me.

I'm staying on copaxone for now until I've had the MRI and blood results and then I'm back to the neuro to discuss my options about treatment.

kkelly77

ash23 wrote: »

Had my neuro appointment yesterday and he feels that copaxone is not working for me and it's time to try something else. So a round of bloods, booked in for a brain MRI and then back once that's done to discuss my other options.

It's a bit disheartening to find out that the daily injections have been a waste of time but at least he is being pro-active and not leaving me for another 6 months before he makes a change.

We're now talking about moving me to Gilenya or waiting til the end of the year for the new oral drug, Tecifedra.
I also had the JC blood test although Tasabri isn't where he wants to go yet in terms of treatment.

So I'm a bit disheartened and disappointed to be honest. He explained that the stronger drugs carry more side effects which I had been hoping to avoid by trying Copaxone. I'm also pondering if going on an interferon initially would have been a better choice although the neuro reckons that neither would have worked for me.

I'm staying on copaxone for now until I've had the MRI and blood results and then I'm back to the neuro to discuss my options about treatment.

Sorry to hear the Copaxone hasn't worked out for you Ash23. If you don't mind me asking, what factors is your neuro using to make that call?

ash23

kkelly77 wrote: »

Sorry to hear the Copaxone hasn't worked out for you Ash23. If you don't mind me asking, what factors is your neuro using to make that call?

I've basically been relapsing the entire time (7 months) that I've been on it. The severity isn't too bad but it's more or less constant, even though I've had 2 lots of IV steroids in that time.

So he said the MS is still very active.

The MRI will tell more in terms of new or active lesions but at the moment, he feels that a change in treatment might be necessary.

discobeaker

Hey Ash

Its great to see that your neuro is taking an interest in your MS and about how to deal with it. It actually restores my faith in neuro's.

I had an appointment 2 weeks ago with my neuro in the mater,he booked it back in January so i show up and alas he was "at a medical convention" or in other words,he is away playing golf cos of the great weather :P So i got his understudy who knew nothing about me and didnt know i even had MS until i had to sit and tell him what was wrong with me,was then told "ok... eh... keep taking your medicine (he didnt know what drug im on) and come back to us in a years time,if anything happens then just give us a call" ... I was beyond annoyed at this point!!!

I then told him i wanted to be tested for Vit D,B, Lymes and afew other things (that he suggested,i think he agreed to do this cos he seen how pissed off i was at this point) so now i have to go back in to them end of October so HOPEFULLY i will get abit more satisfaction then and maybe they will treat me like a human being and not just another number on a file.

Rant over!!!!!

Also ash... how did you or your neuro know that copaxone wasn't working for you? Was there any signs? Im on Copaxone 6 months but to be honest,i dont know if its doing anything at all but i havent grown a 3rd leg or anything (yet) so thats probably a positive.

ash23

Just to give more detail,
I was diagnosed in December and I was in the middle of a relapse with a weak arm and leg. I started Copaxone and had IV steroids but there was no change so I was booked in for more steroids in Feb. Just before I was due to have the steroids I got another bout of optic neuritis.
Had the steroids and the arm cleared up as did the optic neuritis but the leg stayed weak. A month later (March) the optic neuritis came back again. I couldn't have more steroids so it's been that way since

It's not too bad, I can see, it's just blurry. Oh and I also have a muscle imbalance with my eyes for the last few months too.

So he said the copaxone might be reducing the severity of the relapses but in terms of preventing long term disability I need to be on something stronger.

I will say my neuro is amazing. He is so proactive. Blunt and to the point and leaves every decision to me. He lists my options and then it's my call. I prefer a more aggressive approach so this suits me down to the ground.

kkelly77

ash23 wrote: »

Just to give more detail,
I was diagnosed in December and I was in the middle of a relapse with a weak arm and leg. I started Copaxone and had IV steroids but there was no change so I was booked in for more steroids in Feb. Just before I was due to have the steroids I got another bout of optic neuritis.
Had the steroids and the arm cleared up as did the optic neuritis but the leg stayed weak. A month later (March) the optic neuritis came back again. I couldn't have more steroids so it's been that way since

It's not too bad, I can see, it's just blurry. Oh and I also have a muscle imbalance with my eyes for the last few months too.

So he said the copaxone might be reducing the severity of the relapses but in terms of preventing long term disability I need to be on something stronger.

I will say my neuro is amazing. He is so proactive. Blunt and to the point and leaves every decision to me. He lists my options and then it's my call. I prefer a more aggressive approach so this suits me down to the ground.

Can you give us a bit more info on this please ash23? Is the imbalance on the eyes focusing or how the eyes actually blink/stay open?

ash23

kkelly77 wrote: »

Can you give us a bit more info on this please ash23? Is the imbalance on the eyes focusing or how the eyes actually blink/stay open?

It/s the focus. They don't work together all the time. Most of the time I can see fine but then my vision blurs, have to blink once or twice and then it clears.

Honestly though the neuro didn't seem too concerned about that and was more interested in the optic neuritis.

byhookorbycrook

Ash, don't discount Tysabri ,it's the best treatment by far at the moment.

ash23

byhookorbycrook wrote: »

Ash, don't discount Tysabri ,it's the best treatment by far at the moment.

He did say that it's very good. But he feels that's kind of "level 3" treatment with copaxone and the interferons being level one, gilenya and this new drug being level 2 and tysabri being the last option.

If it comes down to it I'll go on whatever works but if I'm JVC positive, that's a pretty big risk to take so id rather exhaust all other avenues first.

byhookorbycrook

The first two years of Tysabri ,even if you are JC+ would be low enough risk. I'm Jc+ and have been on it for 4 and a half years so would be much higher risk, but at the moment I'm staying on ,until Lemtrada comes on stream. I have been relapse free since strating on it an my biggest regret is not starting sooner as the last two relapses I had did a lot of damage to my legs.

ash23

byhookorbycrook wrote: »

The first two years of Tysabri ,even if you are JC+ would be low enough risk. I'm Jc+ and have been on it for 4 and a half years so would be much higher risk, but at the moment I'm staying on ,until Lemtrada comes on stream. I have been relapse free since strating on it an my biggest regret is not starting sooner as the last two relapses I had did a lot of damage to my legs.

I suppose that because I've only been symptomatic for a year, he doesn't want to go in all guns blazing. 2 years on it would only take me to age 32/33.......it's a long road so I'd rather not go to the last resort without trying everything else first. He is a firm advocate of Tysabri but he feels (and I agree) that's it would be premature to start it without trying Gilenya or preferably Tecfidera when it's available.

val444

God, Ash23, you could be describing me! I have just been through the same kind of year as you, though I have delayed any decision about tysabri in order to try for a baby.

It is so disheartening, isn't it? I was gutted that I spent a whole year injecting myself and giving myself permanent scars. I felt like it was all a waste.

ash23

val444 wrote: »

God, Ash23, you could be describing me! I have just been through the same kind of year as you, though I have delayed any decision about tysabri in order to try for a baby.

It is so disheartening, isn't it? I was gutted that I spent a whole year injecting myself and giving myself permanent scars. I felt like it was all a waste.

I felt like that initially but I'm trying hard to be more positive about it. I've only been on Copaxone for 7 months so at least he's not leaving me on it. I know the registrar I saw initially said that she felt I was on the best treatment for my situation. I was lucky she had to discuss it with the consultant! I could've been left on it for another year.

There's action and that's something. I don't think I'd be able to cope if there was nothing being done and I was still relapsing all the time.

byhookorbycrook

The more I hear, the more I appreciate our neuro. She doesn't rush ,answers every question, can ring her office any time if I need to and so on.

pbarr

mamakitten wrote: »

Hi I was wondering is anyone on here taking Sativex and if so how do you find it? I know its not available on prescription here in Ireland at the moment but has anyone managed to get around that (legally!) and use it, specifically for pins and needles in feet and hands?

http://www.ms-society.ie/uploads/File/Community/Sativex%20Submission%20to%20HSE%20Dec%202011.pdf

I know it doesn't answer your question but it might be of interest to some people.

Broom

Hi guys, my first ever post here!

I’m currently undergoing tests for a suspected MS diagnosis, this may sound like a silly question to some but if my Neurologist wants me to begin on medication, will I begin on medication such as Tysabri / Bebif / Copaxone / Gilenya etc or some other medication?

Will I be on this medication for life or is it just for the first 2 years following diagnosis? Also i’ve heard this medication is extremely expensive? If true, is it covered under the Drugs Payment Scheme meaning i’ll have to pay a maximum of €144 a month?

ash23

Broom wrote: »

Hi guys, my first ever post here!

I’m currently undergoing tests for a suspected MS diagnosis, this may sound like a silly question to some but if my Neurologist wants me to begin on medication, will I begin on medication such as Tysabri / Bebif / Copaxone / Gilenya etc or some other medication?

Will I be on this medication for life or is it just for the first 2 years following diagnosis? Also i’ve heard this medication is extremely expensive? If true, is it covered under the Drugs Payment Scheme meaning i’ll have to pay a maximum of €144 a month?

Hi Broom,

If you are diagnosed with MS you will be eligible for a long term illness card. This means that all meds associated with your MS would be covered so you wouldn't be making any payment for them.

As far as I know and the way my neuro explained it to me was that the first options considered would be the Copaxone, Rebif or Avonex.

If those aren't working for you then you may need to consider Gilenya or Tysabri but as far as I know they wouldn't be the first ones the neuro would try.

As for how long you would be on them, it depends. I've been on copaxone for 7 months but it's not working for me so it's likely I'll be changed to something else. What, I don't know yet. But other people stay on those type of meds for years and it works for them. I know of a few posters here who were on them relapse free for a number of years.

With me, I've had blood tests and I'll discuss the options with my neuro once results are back. Outside of rebif, avonex and copaxone, the other drugs carry higher risks and the neuro would disuss these with you if the time should come. I was tested for immunity to shingles and also if I were carrying a virus which can increase the risks if having Tysabri treatment.

I think the treatment can go on indefinitely but as the treatments are all fairly new (since the 90s onwards I think) there's no way of knowing if someone would be on them for life. I don't know if they would always have benefit or if at some point they become futile. But I don't think anyone does know yet as it's all still new enough.
It also varies from case to case.

Hope that helps.

pbarr

If its Primary Progressive MS you're diagnosed with there will probably no medication.