MS in all its glory

embee

Also don't go for Tecfidera, in my experience it was complete garbage. I'm fairly sure it's what kicked off ginormorelapse in 2015. Am left with an unresolving foot drop and constant red desaturation in one eye. Messed with my liver function and made me constantly itchy! No craic at all

pedro87

Thanks for the replys. jesus the side effects sound crazy!. Really good to hear people back up what i have been reading online about avonex.

Not sure who to trust to talk to about all this. You would think that the neuro who prescibed it would have been aware of the horrible side effects of avonex and prescibe better meds to go on.

Are there any good ms groups to go to in person?

discobeaker

pedro87 wrote: »

Thanks for the replys. jesus the side effects sound crazy!. Really good to hear people back up what i have been reading online about avonex.

Not sure who to trust to talk to about all this. You would think that the neuro who prescibed it would have been aware of the horrible side effects of avonex and prescibe better meds to go on.

Are there any good ms groups to go to in person?

Hi there, check out copaxone. I'm on it 5 years and has next to no side effects. Only problem is the injecting everyday can leave you with some site reaction marks.

As for groups,there is one in Dublin I used to go to that I found on meetup.com

Hopefully this link works, they meet up once a month in the IFI in Temple bar

https://www.meetup.com/Dublin-Multiple-Sclerosis-Group/

embee

I was diagnosed in April 2014, first drug I went on was copaxone which I started in June 2014. Lasted eight months on it but took it as usual one evening in February 2015 and had an anaphylactic reaction to it, had to go to a and e and have adrenaline, warned by MS Nurse not to take anymore of it. Was put on tecfiders which I felt absolutely terrible on, itchy, yellow, liver function was way off, felt more and more symptomatic as time passed. MRI after four months of tecfidera indicated I had multiple new lesions. Was told to stop taking it as it wasn't working. Was moved onto tysabri in August 2015. First infusion they kept me in for a week on steroids as I was very symptomatic. I had walked into the infusion centre for the first tysabri. 28 days later I had to be wheeled in in a wheelchair, I couldn't walk at all, no balance, slurred speech, no idea where I was or who I was, another MRI suggested that I possibly didn't have MS but a big brain tumour. Wasn't a brain tumour, merely MS, but had an uncountable number of lesions,
there were literally hundreds of them. Spent ten weeks in hospital for intensive therapies, physio, OT, speech and language, as well as iv steroids every day for eight solid weeks. Had to learn how to walk from scratch, had a right arm that was clenched into a tight fist and rigid against my chest. Tysabri, plasma exchange, steroids galore, eight more weeks of hospitalisation in the national rehabilitation hospital. Tysabri failed after ten months so now I've had both rounds of lemtrada. I've had pretty aggressive MS but the lemtrada has stopped it on its tracks. I'd always say, there's no point wasting your time with injections or tablets, felt my best when on an infusion therapy. Wasted time and accumulated permanent damage from ineffective meds! Wish I'd had lemtrada from the beginning to be honest.

tinofapples

embee wrote:

I was diagnosed in April 2014, first drug I went on was copaxone which I started in June 2014. Lasted eight months on it but took it as usual one evening in February 2015 and had an anaphylactic reaction to it, had to go to a and e and have adrenaline, warned by MS Nurse not to take anymore of it. Was put on tecfiders which I felt absolutely terrible on, itchy, yellow, liver function was way off, felt more and more symptomatic as time passed. MRI after four months of tecfidera indicated I had multiple new lesions. Was told to stop taking it as it wasn't working. Was moved onto tysabri in August 2015. First infusion they kept me in for a week on steroids as I was very symptomatic. I had walked into the infusion centre for the first tysabri. 28 days later I had to be wheeled in in a wheelchair, I couldn't walk at all, no balance, slurred speech, no idea where I was or who I was, another MRI suggested that I possibly didn't have MS but a big brain tumour. Wasn't a brain tumour, merely MS, but had an uncountable number of lesions, there were literally hundreds of them. Spent ten weeks in hospital for intensive therapies, physio, OT, speech and language, as well as iv steroids every day for eight solid weeks. Had to learn how to walk from scratch, had a right arm that was clenched into a tight fist and rigid against my chest. Tysabri, plasma exchange, steroids galore, eight more weeks of hospitalisation in the national rehabilitation hospital. Tysabri failed after ten months so now I've had both rounds of lemtrada. I've had pretty aggressive MS but the lemtrada has stopped it on its tracks. I'd always say, there's no point wasting your time with injections or tablets, felt my best when on an infusion therapy. Wasted time and accumulated permanent damage from ineffective meds! Wish I'd had lemtrada from the beginning to be honest.

Jesus, God love you that sounds absolutely horrific. Thanks for sharing your experience.

cj maxx

tinofapples wrote: »

Hey, hope the new job went well, couldn't agree more with what you said. My job isn't an issue for me, it's the tiredness of the day as a whole that catches up with me. Looking healthy reminds me of what my manager said when I informed him of my situation ... "you present as a healthy looking person"

It's a month tomorrow since I began my week of Immunoglobulin and I can safely say I see no change. I enquired in my local health store about the CBD oil and the girl suggested Mag365, she says she has lots of customers very happy with it, with various ailments including MS.

Has anyone here tried it ?

Tried CBD capsules for a month, and didn’t notice any difference. Maybe I didn’t give it long enough. I got mine from CBD brothers. Google them

byhookorbycrook

Being honest,any of the MS drugs will have side effects. They tinker with your already dodgy immune system. I'd be pushing for either Lemtrada or Tysabri though, the injectibles aren't really worth much at all and damage done early on can mean lots of disability down the line, as I have found to my cost. I just wish there were better drugs like Lem and Ty when I needed them !

Carrie6OD

Hey folks, does anyone have any experience with Fampyra? Possiblt going on it soon for a months trial to see if it improves my distance walking at all. Should I expect some dodgy side effects?

Lollipops23

byhookorbycrook wrote: »

Being honest,any of the MS drugs will have side effects. They tinker with your already dodgy immune system.

I've been on Gilenya since day 1 (coming up on 3 years) and have thankfully had no new lesion activity at all since.

The first 18 months on it were rough though; got every cold and infection going. Felt like I was sick constantly.

I think a combination of getting used to the drug and taking better care of myself have helped, I only get sick a normal amount now!

byhookorbycrook

Carrie6OD wrote: »

Hey folks, does anyone have any experience with Fampyra? Possiblt going on it soon for a months trial to see if it improves my distance walking at all. Should I expect some dodgy side effects?

Never had any side effects, I was involved in the process to make it funded through the HSE. Only 1/3 of patients find it successful. For me, the walking speed was not the best part, I had a decrease in muscular pain and was able to walk further. (I actually surpassed the time done by the hospital caretaker who was used as a control|!!)

embee

Had MRI results almost two weeks ago - not a single active lesion one year post round two!!! Neurologist was happy to tell me I won't need anymore lemtrada for the foreseeable, or perhaps I may never need it again ever in my life! Can't say enough good things about lemtrada, it's halted my galloping, aggressive MS in its tracks. The neurologist told me that there was an incidental finding on my MRI that there is a nodule on my thyroid. Gonna be having an ultrasound scan on it soon and possibly a biopsy. Went googling thyroid nodules like an absolute dope (when will I ever learn like?!) and got totally freaked out. Thyroid issues are a very common side effect of lemtrada so I am hoping that's all it is. I've read that 90% of thyroid nodules are benign, but am still a bit worried. I've no sore throat but I am a bit hoarse and of course I've convinced myself that it is gonna be something really bad. Can feel a small lump in my neck but I think I'm ultra paranoid and feeling things that aren't there. Otherwise it was great to hear that's had no active lesions at all!!! Bout flippin time!! Hope you're all well xx

Lollipops23

embee wrote: »

Had MRI results almost two weeks ago - not a single active lesion one year post round two!!!

Excellent news!! (besides the nodule obvs!) Long may it last!!

discobeaker

Like Embee, I got results of my MRI last week. Was kinda dreading it as it was the first MRI I've had since my dad passed away 2 years ago and my letter from the mater was marked as an emergency clinic so I was freaked out they found something but turns out my MRI hasn't shown any change since my first Scan nearly 6 years ago so the copaxone must be doing something right

Hope you guys are all keeping well x

byhookorbycrook

Carrie6OD wrote: »

Hey folks, does anyone have any experience with Fampyra? Possiblt going on it soon for a months trial to see if it improves my distance walking at all. Should I expect some dodgy side effects?

I'm on it for a few years, no side effects, must be taken fairly strictly 12 hours apart (with/without food.) I put a reminder on my phone for the first few weeks. Sending you a PM

embee

Lemtrada seems to have broken my thyroid, it's overactive and there's a nodule on it! MS is stable thankfully, wasn't in the mood for potentially a second auto immune condition!

Patient11

Does anyone here take Low Dose Naltrexone for MS ?

byhookorbycrook

It's not widely prescribed , mainly because there's no real scientific support for it as a stand alone therapy.

I know a few people who took it when newly diagnosed as a disease modifying drug (dmd) and who extolled the virtues, until they had very serious and disabling relapses. Because MS is so varied, you will find individuals who will tell you they are doing really well on all kinds of weird and wonderful things, like goat's blood serum, being stung by bees, rolling around in nettles, rubbing on olive oil 2 times a day (all of which people SWORE to me cured their neighbour's cousin's best friend's sister or whoever)

If you feel it might help relieve pain/spasticity or similar, I'd talk to your neuro.

discobeaker

Patient11 wrote: »

Does anyone here take Low Dose Naltrexone for MS ?

I take 4.5mg of LDN every night along side Copaxone. I find it helps alittle with energy levels and fatigue but not much else. As byhookorbycrook says,not much research has been done with LDN but if you feel like it could do you some benefit then go with it.

Carrie6OD

Patient11 wrote: »

Does anyone here take Low Dose Naltrexone for MS ?

An Irish lady wrote a book about it. She was living in New York and her husband had MS and she was a massive advocate for it. I got the book from the library when I was first diagnosed (can’t remember the name of it). I have mentioned it to two neurologists for my own ppms and both of them dismissed it as a placebo. I’d probably still try it though!

0lddog

BTW :

Public library system catalogue search : https://librariesireland.iii.com/iii/encore/homepage?lang=eng

LegacyUser

Hi Everybody,

I have just been prescribed Mavenclad® (Cladribine) is anyone else on this drug to manage their MS. If yes how have you found it.

Many thanks.
MSMAN

Patient11

byhookorbycrook wrote: »

It's not widely prescribed , mainly because there's no real scientific support for it as a stand alone therapy.

I know a few people who took it when newly diagnosed as a disease modifying drug (dmd) and who extolled the virtues, until they had very serious and disabling relapses. Because MS is so varied, you will find individuals who will tell you they are doing really well on all kinds of weird and wonderful things, like goat's blood serum, being stung by bees, rolling around in nettles, rubbing on olive oil 2 times a day (all of which people SWORE to me cured their neighbour's cousin's best friend's sister or whoever)

If you feel it might help relieve pain/spasticity or similar, I'd talk to your neuro.

There is some serious science behind LDN. I think the only reason we don't hear much about it is because its an old drug and there is no money to made from it.


https://www.imt.ie/opinion/greater-awareness-of-ldn-needed-08-09-2011/

eimsRV

Anyone who attends Beaumont, could you pm me the number for the MS nurse mobile? I’ve changed phones and lost their number. Thanks

fungie

Does anybody have any advice re getting mortgage protection? I had a minor, single episode about 6 years ago. Nothing since and no relapses and amn't on medication. I was diagnosed with CIS but I fear I may still find it tough to get mortgage protection.

What are other peoples experiences?

Salmotrutta

fungie wrote: »

Does anybody have any advice re getting mortgage protection? I had a minor, single episode about 6 years ago. Nothing since and no relapses and amn't on medication. I was diagnosed with CIS but I fear I may still find it tough to get mortgage protection.

What are other peoples experiences?

It's a couple of years ago now so it's a bit hazy but I got it (joint mortgage) - I think I had to get a letter from my neuro and we were quoted about double the cost of what it would have been without MS. CIS and no symptoms since should be ok.

tinofapples

Hi guys, I meant to post this a few weeks ago but it got forgotten, my mother in law pointed me in the direction of this article in one of the weekend magazines that accompany the papers, might be of interest to someone:

byhookorbycrook

Nothing showing?

0lddog

byhookorbycrook wrote: »

Nothing showing?

'twas there earlier. Was a photo of a media article. Pulled?

tinofapples

0lddog wrote: »

'twas there earlier. Was a photo of a media article. Pulled?

It was a photo of a media article alright, I didn't know whether it was appropriate to post but I can still see it there.

0lddog

tinofapples wrote: »

It was a photo of a media article alright, I didn't know whether it was appropriate to post but I can still see it there.

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