MS in all its glory

Loretogirl

fergal.b

No I am not having problems, I did have 2 relapses. The doctor just said I would start the new meds. next year.

I hoped there would be someone else using it and get info on it - good and bad.

byhookorbycrook

I'd love a crack at Lemtrada. The big issue with is around clotting and thyroid problems, but as these have been identified they can be counteracted. There are very people on it as present as there were funding issues.
There's a guy who had it in England a few years back who kept a blog : http://www.davidscampathstory.org/

My neuro says that as I have been stable on Tysabri that it is unlikely I would qualify for Lemtrada. Both Lemtrada and Tysabri are risky due to possible side effects but in an ideal world, I'd love to get Lemtrada.

Don't settle for anything less than either of these two drugs, would be my advice, I'm sorry I stuck with Betaferon so long.

kilco

Hi All,I was officially diagnosed last year and am on rebif but just wondered are any of you on long term disability benefit and was it hard to get on? This may sound like I'm trying to take any easy option but I have more or less know I had it since 2011 and continued to work and had just been waiting for more symptoms to be officially diagnosed. The thing is my ms is relatively mild and I would never lie and make it out to be worse just to get benefit as I don't think that's lucky but I am finding the stress of working 3 days a week with 3 kids running around after an elderly mother all too much and feel like something has to give ,any advice? I have always worked since I left school and am 35 now. I am just exhausted and my job is stressful and am worried that if I keep going like this I will end up making it worse. I would appreciate any advise. Thanks.

ash23

kilco wrote: »

Hi All,I was officially diagnosed last year and am on rebif but just wondered are any of you on long term disability benefit and was it hard to get on? This may sound like I'm trying to take any easy option but I have more or less know I had it since 2011 and continued to work and had just been waiting for more symptoms to be officially diagnosed. The thing is my ms is relatively mild and I would never lie and make it out to be worse just to get benefit as I don't think that's lucky but I am finding the stress of working 3 days a week with 3 kids running around after an elderly mother all too much and feel like something has to give ,any advice? I have always worked since I left school and am 35 now. I am just exhausted and my job is stressful and am worried that if I keep going like this I will end up making it worse. I would appreciate any advise. Thanks.

I applied for it. More for the free travel to be honest because getting too and from all the hospital appointments was costing a fortune. plus parking. I was working full time at the time so I knew the payment itself wouldn't be anything much. But I also felt it would be better to have it in place and then look for an increase if I ever became unable to work.

It took them 9 months to process the application and I was rejected for earning 2e per week over the limit.
I reduced my hours and used Family Income Supplement as a top up instead.

So I suppose that if you did give up work you'd need to be prepared for a very long wait for it and have plans in place to manage financially until then.

I know that while you're waiting on a claim to be assessed, the local community welfare officer can help you but only if you have no other source of income.
If you have a partner and they are working, the easiest option might be to apply for Family Income Supplement.

AilsOD

byhookorbycrook wrote: »

I'd love a crack at Lemtrada. The big issue with is around clotting and thyroid problems, but as these have been identified they can be counteracted. There are very people on it as present as there were funding issues.

My neuro says that as I have been stable on Tysabri that it is unlikely I would qualify for Lemtrada. Both Lemtrada and Tysabri are risky due to possible side effects but in an ideal world, I'd love to get Lemtrada.

Don't settle for anything less than either of these two drugs, would be my advice, I'm sorry I stuck with Betaferon so long.

I thought about Lemtrada as well, out of curiosity more than anything, I can't have Tysabri, JC Positive, they won't even discuss it! I'm on Gilenya and very happy to report its working for me. I did, however, ask at my last appointment in July and the guy I was talking to (I see someone different every time I go in there, haven't seen actual neuro in about a year and a half now!) said that in his opinion there isn't enough data on Lemtrada's safety yet and that he'd only recommend it if I literally had no other option.

I'd love to see the stats on the CRAB drugs, I only know one person that they have actually worked for (Betaferon). I failed miserably on Rebif myself, complete nightmare!

byhookorbycrook

CRABS are about 40% I think. I'm JC+ and am on Tysabri since Jan 2009. I'd push for it, it's the best out there at present.

AilsOD

I'm ok for the mo, Gilenya is grand, don't want to risk PML unless absolutely necessary. Neuro was basically saying that Tysabri was my only hope until the JC test came back then it wasn't even to be talked about. Just lucky that Gilenya works for me I guess.

ash23

I'm jc negative but went with gilenya over tysabri more for the convenience than anything. Started October 13 and haven't had any relapses other than one I think is just starting now. Will give it a few days before I'll call it a relapse.
Stupid arm.

byhookorbycrook

I see by your info that you are in the West, I know the hospital there has had two cases, so can understand to an extent their reticence. Hopefully it's just the cold or even something like a UTI sending your arm funny.

ash23

byhookorbycrook wrote: »

I see by your info that you are in the West, I know the hospital there has had two cases, so can understand to an extent their reticence. Hopefully it's just the cold or even something like a UTI sending your arm funny.

Nope the choice was entirely mine between gilenya and tysabri. I was given the info on both and left to make up my own mind.
Between work and child I went with the tablet as I didn't fancy the trek every month. Plus my symptoms aren't too severe so I didn't feel that I needed to go in all guns blazing.

If gilenya didn't work, tysabri was my next port of call but luckily it's working well.

Hopefully I'll wake up tomorrow and the arm will be back to normal.

Salmotrutta

My neuro has had 2 or 3 patients with PML, one of whom isn't doing so well I believe. So when my test came back JC+ he was understandably reluctant to go with it. Not totallyruled out, but wants to keep it in reserve in case my MS gets a lot more active and we need to try to get it under control. He did make clear that he would only want me on it for 2 years max if we did go down that route (my JC titre was quite high). I've been on Gilenya since September, just had MRI last week - no new lesions and existing lesions reduced in size. Long may that continue! Happy to stay on it if that remains the case.

Good luck Ash, hopefully it's just temporary.

kkelly77

There's been a lot of talk recently about this drug and that drug. Good to hear some folk have found something that works for them.

But has anyone tried any treatments that aren't long term pharmaceuticals? I don't think there is any mention of this in the thread.

femur61

kkelly77 wrote: »

There's been a lot of talk recently about this drug and that drug. Good to hear some folk have found something that works for them.

But has anyone tried any treatments that aren't long term pharmaceuticals? I don't think there is any mention of this in the thread.

Oh there is a wealth of information on the internet about alternative treatment from the Swank Diet (low fat), Ashton Embry (low, fat gluten and diary free) to the Water diet (?). Personally, I use half a dose of betaferon, my choice as the side effects were not nice. Also, I avoid meat, limit my diary, swim, walk, basically I look after number one. I listen to my body, avoid all stress, I am not a stressed person anyway, type B personality. I find as the children are much older and not physically demanding anymore I am less tired. I will go to the physio without hesitation if I need help and today no one but me would know I had M.S. I read so many books about MS and tried so many Snake Oils but for me simple living, and a some conventional medicine works. I wouldn't dismiss totally conventional therapies as they are not all bad but you have to find what works for you. Knowledge is power so you are doing the right thing by asking questions. The internet makes a lot of promises and not all are honest.

embee

So, I've only officially had MS since April. Was grand up until around new years when I started getting symptomatic. I have parasthesia in both legs, a blurred spot in the vision in my right eye, red desaturation in my left eye, I have all over aching pain and I am fatigued beyond words. My right leg feels "wonky", like it's not quite working right. Hard to explain.This is on and off since New Years Eve..... not sure if I am relapsing or what the hell is going on. This MS thing is new to me and this is the first "relapse" I've had since diagnosis. I spoke to the Copaxone nurse, who said I might need steroids. When I told her I'd had steroids twice in the past eight months she felt that doctors would be reluctant to give them to me again so soon. Not sure what to do as symptoms not really abating to any great degree. I feel like going to my GP will be pointless as she'll suggest steroids. Anything else I should do?

Closov

Hi embee, your GP might also rule out a few basics by doing bloods etc. A minor infection can cause all the MS symptoms to magnify.
It does sound like case for the neurologist though.
In the meantime stay stress free, don't cut short any sleep and beware of overheating. (I over-heated two nights in a row last week, due an innocent change of bedding, got very fitful sleep and my symptoms have been double rotten since)

byhookorbycrook

If it's going on since New Year's I'd be inclined to go to the neuro.

embee

How does one stay stress free? My job is by its very nature extremely stressful. I can't not go to work and I think the stress caused by lack of income would be worse. Will call the MS nurse tomorrow and see what she thinks.

Leogirl

Hey all,

Just coming out of mild relapse & was due to start on gilenya next week but found out last night i'm pregnant, about 5 weeks gone! Any tips for staying well during pregnancy- I'm terrified, it's my first!

coughdrops

Hi Leogirl- congratulations on your pregnancy. I don't have kids yet, but my friend has 2 (she has MS, not just a random mate :-) ) Her MS was better during pregnancy, and found that she felt much better during it. I hope that is your experience too, I am sure others on here will have better advice for you

I haven't been on here much recently. I just have a quick question- I have been off DMDs for over a year now, in an attempt to get pregnant. It's not happening for us, so I have decided to go back on DMDs. In the meantime, we've moved house, place is still full of stuff to unpack, and I can't find my LTI book. In the back of my mind, I have a feeling that they expire after e.g. 3 years - if that is the case I need to renew it anyway. Does anyone know if there is an expiration on them? If not, is it difficult to replace a lost one? I can't find anything online about replacing it. I guess I just get the form filled in by neuro again when I go back to get my new prescription etc. Thanks in advance.

byhookorbycrook

You just report it as lost and they will re-issue it .

Meanwhile, bad news for people who wanted BG-12 or "Tcfidera"
http://www.ms-society.ie/blog-articles/1766-ncpe-rejects-tecfidera

echo beach

coughdrops wrote: »

In the meantime, we've moved house, place is still full of stuff to unpack, and I can't find my LTI book. In the back of my mind, I have a feeling that they expire after e.g. 3 years -

Don't worry about the lost LTI book. They don't expire, once the book is issued it has a number that remains valid. The prescription needs to be renewed every 6 months but you don't need to have the book for that.
Your pharmacy will have the number on file and if the book doesn't turn up your local HSE office will send you out a new one.

Leogirl

coughdrops wrote: »

Hi Leogirl- congratulations on your pregnancy. I don't have kids yet, but my friend has 2 (she has MS, not just a random mate :-) ) Her MS was better during pregnancy, and found that she felt much better during it. I hope that is your experience too, I am sure others on here will have better advice for you

Thank you so much, we're delighted but a bit scared too. Was at GP today though & she reassured me a lot. Also said how MS can be better during pregnancy. Up to recent relapse which was kinda minor, I had almost no symptoms & had no relapse since first diagnosis 11/12 years ago so hope to just stay like that!! Have a few pregnancy symptoms though but enjoying the reminders that I am :-)

Blinder

Sudden onset of double vision at beginning of December. After stay in hosp for MRI via optician, doctor and a&e, Told that MRI had lesions and that given symptoms probably had MS but only neurologist would give that diagnosis. Referred to Vincent s and told that should hear about appointment within 2 weeks.

Followed up a few times with vincents and turned out that original hospital hadn’t sent the results and referral through. They did this 2 weeks ago after a few follow up calls from me. However , still waiting to hear about appointment. Phoned vincents this morning and I’m in the system but there is no appointment scheduled for me yet. Was told that longest wait for an appoint would be 6 months.

Feel like they have dropped a bombshell in December and then forgot about me


Wondering if I make appointment with GP to talk about it? ( Called into GP’s office a few weeks ago, but original hospital hadn’t sent anything through at that stage so they had no record of results. They should have them now). Didn’t make appointment to talk to GP at the time as if they didn’t have results there was nothing to talk about.
Should I get a copy of the results and a referral letter from doctor so that I can try and get an appointment with another neurologist privately?

ash23

Blinder wrote: »

Sudden onset of double vision at beginning of December. After stay in hosp for MRI via optician, doctor and a&e, Told that MRI had lesions and that given symptoms probably had MS but only neurologist would give that diagnosis. Referred to Vincent s and told that should hear about appointment within 2 weeks.

Followed up a few times with vincents and turned out that original hospital hadn’t sent the results and referral through. They did this 2 weeks ago after a few follow up calls from me. However , still waiting to hear about appointment. Phoned vincents this morning and I’m in the system but there is no appointment scheduled for me yet. Was told that longest wait for an appoint would be 6 months.

Feel like they have dropped a bombshell in December and then forgot about me


Wondering if I make appointment with GP to talk about it? ( Called into GP’s office a few weeks ago, but original hospital hadn’t sent anything through at that stage so they had no record of results. They should have them now). Didn’t make appointment to talk to GP at the time as if they didn’t have results there was nothing to talk about.
Should I get a copy of the results and a referral letter from doctor so that I can try and get an appointment with another neurologist privately?

Similar happened to me. Was sent to the eye clinic via A&E due to double vision. Saw a neurologist in the eye clinic who referred me for an MRI and steroids. Had the MRI and follow up with eye clinic who told me that I'd get a neuro appointment. Nothing arrived so I was waiting. Mentioned it to the GP who hadn't gotten anything at all from the hospital. GP followed up with the hospital and got the MRI report and explained that it showed lesions etc so most likely was MS but that neuro would have to confirm. GP also got on to the hospital and got me a neuro appointment a month later where diagnosis was given.
Could and should have been diagnosed in October but it was December when I was actually diagnosed and only because I followed up.
I don't think it'd be any harm to discuss with the GP and see if they can speed things up in some way.

eimsRV

Hi all,

Do many people on this forum go to MS events, fundraisers and the like? I'm interested in going along but my DR has said I should wait a while.

I'm back to working full time since the new year, feel ok apart from fatigue and sensitivity to temperature and touch on my right side. I'm starting betaferon injections on Friday.

Eims xx

byhookorbycrook

Eims, pm-ing you.

embee

Going to the GP in the morning, have a sharp persistent pain in my left temple with blurred vision. I think I've a wisdom tooth about to erupt on the upper left side so part of me thinks that's all it is. Have had paracetamol with little effect this evening. So annoying, I can't determine whether maybe this wisdom tooth about to erupt is causing the pain in my head or maybe it's the MS. Hopefully the GP will be able to shed some light on it all.

byhookorbycrook

I had bad pains in my head and spent a fortune on fillings,even went so far as to tell them to remove a tooth. It transpired I had TMJ disorder (jaw giving out because I apparently clench my teeth all the time.) I got an (expensive) mouth guard and it solved most of the pain.

Lots of MS-ers have it, it seems. Might be worth thinking about.

discobeaker

Hi all

So I had an appointment last week as my year check up in the hospital. I was given a clean bill of health... Well,except for the ms,but was told I should excerise so I joined a gym and have my induction day tomorrow.

Anyone know of what excerises I should avoid or what I should work on? My balance ain't the best so I won't go straight for the treadmill but any suggestions?

Thanks again

byhookorbycrook

Many MS-ers can get weaker as they get warmer, it's only a temporary thing, but just be aware you may need to sit until you cool a bit. Great that you have joined a gym, well done!