MS Support / Rant Thread

LegacyUser

So I'm a 27 year old female who has been recently diagnosed with MS. I will start treatment (Copraxone) tomorrow... self injecting is something I am not looking forward to trying. I have also just applied for my LTI book. The MS nurse at the hospital has arranged for the home support nurse to come see me too.

I've been symptomatic for a month now, and am pleased to have a diagnosis so soon after my first symptom began.

My reason for starting this post is that I'm wondering how others cope with it. I'm hoping that once the treatment starts, my symptoms will go away, and I'll be back to myself but I would love to hear other people's stories and experiences of living with MS. I seem to be the only person I know who doesn't know someone with MS. I'm a naturally very positive person, and am trying to deal with this disease in a practical way, and manage my emotions at the same time.

So how do you cope?

byhookorbycrook

Treatments won't reverse any damage, sadly. For injections , put a few icecubes in a bag on the site for about ten mins before you inject. I used to get flu on betaferon,so took paracetemol about half an hr before.

Try to keep stress to a minimum, be sure to get plenty omega oils into your diet. I was diagnosed in 2001 and am still working and riding my horse(takes someone else to get me up, mind!) Fatigue can be a problem so don't stay up late unless you can't avoid it.

DO NOT google MS + prognosis, as you will drive yourself nuts. Avoid the lunatic fringe who know that getting stung by bees/drinking goat serum/rolling in nettles will cure you.

I am now more prone to UTIs so drink lots and get to like cranberry juice.

I was also told to avoid MS meetings, as you will meet people worse than you and just freak yourself out.

PM me , if I can be of use.

FluffyCat

Oh I agree you shouldnt look anything up on the internet!! Ask your nurse instead.
Its easy to get bogged down by this disease but its so important to remember that everyone is so completely different so no-one can predict things for you!
You need to keep the positive mind and not have MS in your thoughts 24/7!
Im on treatment 3 years now and only had one very minor relapse so id say the medication works!!
Also remember the oral drug is coming on the market early next year so that may be available for you.
Ill be switching to that as soon as its out and i cant wait!!
So just say to yourself 'I have MS but it doesnt have me!'
You'll be fine!

Aurora Borealis

Hey, I'm newly diagnosed too, just 6 weeks. Not on meds yet which has me stressing out as am waiting ages on my next neurology appointment. Going to speak to my liaison nurse tomorrow hopefully.

I'm finding it tough at the moment emotionally I must say and find it hard enough to talk to friends because most are either ignoring the topic altogether or are just like ah you'll be grand, look at so and so. Obviously that's what I'm aiming for but if I'm honest I'm pretty freaked at the moment and exhausted too which may not help matters. I'm sticking to my usual work and socialising routine so maybe I need to take it a bit easier.

I haven't done a huge amount of web research either as would be wary of same and also I don't want it ruling my thoughts. I have gotten a few books but they remain bedside and untouched as yet. One that has been recommended was the Healing Code by Dermot O'Connor. As I said I haven't read them but I intend to, albeit with an objective mind. I just want to educate myself on the various schools of thought and then pick and choose whatever feels right for me.

Anyway a few thoughts from a fellow newbie to MS. I hope you get on okay with the meds.

AB.

paul1303

hi there,
i was diagnosed with MS 8 years ago whjen i was 31 - relapase remitting. i take copaxone. when i was diagnosed first i was freaked out completely - my early symptoms of ms were vertigo and severe numbness, and i went through the mill for a year between one doctor and another untill finally an eye and ear doc in the blackrock clinic suggested i get an mri and then the demyelination (excuse spelling here) was discovered. to be honest it was a relief to be diagnosed with something as i thought i was going crazy and i really felt people were not believing me when i said i was off balance. 8 years later - i have had one major relapse which is not that bad really. i did research ms at the start on the internet - but i would not recommend it - there is a vast amount if info available but it will probably raise more questions in your head than give you answers.... byhookorbycrook is very right with the advice given and without being old fashioned - a good night sleep is a great help... keep in touch

LegacyUser

OP here.

Thanks for the posts and support. I did get a little sucked into the internet searches when I was told I "may" have MS, but tried to use the official sites. Even they scared the bejesus outta me, so I've stopped that nonsense!
I'm exhausted since I got out of hospital, but won't nap in the day. I am rising at 6am every morning though, and cos I can't move around much (heavy legs, pins and needles in bum and feet), I find I'm getting bored and my days are SO long.
I have one concern though, I'm obviously off work for the next few weeks (at least), but I'm worried for when I go back. It's a fairly stressful job at the best of times, AND it's shift work, so the shifts are 12- 13 hrs long and includes live nights. Is it possible to continue with these shifts/ hours? Should I think of moving to a different job or just see how I cope when I do go back? Thanks again.



On a side note, Aurora, when I was speaking to my GP about wanting to get my symptoms sorted ASAP, he said that the best advice he could give me was "if you feel you're not getting what you want or need from the docs at the hospital, be as awkward as you can to make them listen".
I noticed I definitly had to use my assertion skills when speaking to the docs at the hospital, as they wanted to leave me two weeks before an appointment when I had severe blurred/ double vision. I got my appointment earlier purely by not taking no for an answer. Good luck!!

paul1303

hi newly diagnosed,
fatigue and tiredness are one of the worst effects of MS i suffer from - i work a very stressfull job too and i work long days 7am till 6pm ( i need the job and the money..), when i said a good night sleep is good - im in
bed at 9.30 each night, i worked shifts for a while a few years ago and after 2 months i had to quit my job as my health did suffer, but you are probably best to see what is possible with your boss. take it easy and good luck with the copaxone - let me know if i can help, p

byhookorbycrook

I never had as many people tell me "how well you look" until I was diagnosed. I made no secret of it and even did a TV programme on MS( The pool of people with MS and Irish seems to be quite small!!)
I teach in primary and am working away. I used to train the football team. I had to give that up, because standing was killing me,but I still ride.

You will meet the "it could be worse" brigade (Really, and you know this how???), the "if I don't mention it, it isn't happening" brigade,the "oh god you poor thing, how will you cope" brigade( hard not to smack some of these :D )

Everyone's MS is different,my advice is to get on MEDs asap, because each relapse will do some damage that may last. Eat as healthily as you can, get out in the open air (vit D is very important for MSers.)

Get on with life, yes there will be things that you might longer be able to do, you will eventually realise that yes, it COULD be worse, but you need to learn that for yourself.

PS, you will need ot inform your car-insurance company of your diagnosis, as it may invalidate your insurance if you don't. My neuro does me a "fit to drive" letter each year.

Aurora Borealis

Did the car insurance with a GPs letter so was relatively hassle free. With regards to other types of insurance, namely life and travel would anyone have any thoughts or advice there? Neither are of immediate importance but just wondering about peoples experiences, are premiums greatly increased etc?

Sorry newly diagnosed if hijacking. Reckon you're right btw on making myself heard re hospital appointment. Got an appointment for mid June. That'd be 9 months after being diagnosed! :mad:

thecapedcanine

I also have MS - I was diagnosed in December 2003 with the relapsing remitting type.
To date Ive had 8 relapses, which is roughly one a year- although thankfully Ive no real lasting damage except for a slightly weaker left leg.
I was on Interferon treatment up until last year, (Rebif) and the neurologist seemed to think that anything up to two relapses a year means the medication is working.
I came off the meds to get pregnant- and will be going back on them once my baby is born.
As someone else said above theres always the 'it could be worse' or the 'how are you coping' brigade youll have to deal with. My mantra is the following 'MS will not control my life - I have it it doesnt have me' and that seems to keep me pretty upbeat. Relapses are hard but you do get better with the steroid treatment. One thing I would advise is that if you get any visual symptoms like blind spots or eye pain get the steroid treatment immediately. Visual problems are caused by Optic Neurits - and the Neuro told me not to take any chances with vision.

LegacyUser

Thanks for all the replies. You hear a lot about avoiding the Support Groups etc. due to people being so downtrodden and negative about the illness so it's really great to see how it's affecting real people in real life.
I did my first injection yesterday, and due to all the preparation (affirmations, visualisations etc.) it went without a hitch. There's a lump at the injection site but that's apparently normal!
I'm getting the feeling that coping with MS is dependant on how self aware you are, and that when you notice that you're not feeling great, it's time to slow it down!
I'm hoping that this works for me. I'm gonna start managing my stress better, exercise more, improve diet etc. I'm hoping I can carry on with my "normal" life for as long as possible but am under no illusions that I may not hit a bump every now and then.

paul1303

congrats on first injection, you get used to the injection site reactions and make sure to keep rotating the sites, best of luck

LegacyUser

Hi NewlyDiagnosed,

I am in the same situ as you only newly diagnosied and dont have anybody to talk to.
If it was not to much hassle could you mail me at msworried@gmail.com. I would love to talk to someone who is starting out on meds. If you dont want to no problem at all. Best off luck.

Many thanks.
msworried

ralph123

Hi there,
I read your thread and sorry to hear about your MS. I was told I had MS about 2 years ago, I have been on copaxone for 54 weeks. Unfortunately I have not found this drug helpfull. I have suffered 3 relapses will taking this drug. I am requesting the docs to change my drug. With copaxone I also found that I got terrible brusing around the stomach area and pain when injecting the legs.
I can appreciate that reading the above is not what you want to hear but I was believe in being honest. I would of loved someone to tell me how they got on with Copoxane before I tried it, hopefully you may be more successfull.

Take care:)

LegacyUser

Thanks again for all the support and posts. The injecting is going well but the sites and stingy reactions are different for each area, so I'm still getting used to that.
My eyes have still not improved, and are worse when I'm outside so the MS nurse has advocated for me to see a eye specialist, which I'm pleased about. I just wanna go on steroids or something so I can feel semi- normal again. I've been having A LOT of down days recently.

ralph123 wrote: »

Hi there,
I read your thread and sorry to hear about your MS. I was told I had MS about 2 years ago, I have been on copaxone for 54 weeks. Unfortunately I have not found this drug helpfull. I have suffered 3 relapses will taking this drug. I am requesting the docs to change my drug. With copaxone I also found that I got terrible brusing around the stomach area and pain when injecting the legs.
I can appreciate that reading the above is not what you want to hear but I was believe in being honest. I would of loved someone to tell me how they got on with Copoxane before I tried it, hopefully you may be more successfull.

Take care:)

Apparently I'm having a "severe relapse" now, hence all the symptoms! I thought they'd ease with the Copaxone but every day I seem slightly less able. I had the same experience when I injected over the bellybutton, the site flared up into a big lump. Apparently under the bellybutton is better. I find my bum to be the sorest after an injection. No bruising yet, thankfully- and I'm moisturising like a mad woman! The Copaxone support nurse has been amazing, and ringing most days, so I feel utterly prepared for what I'm going through.

paul1303

hi newlydiagnosed,
hang in there - you are doing very well by tackling this head on - the relapse will pass and you will get a break from the symptoms. down days will happen but when the relapse is past - you do feel much better. did the ms nurse give you a gel pad to use? i have one and keep it in the fridge - it stays cold and is relief for the ski directly after the injection.
take care and pm if you want

FluffyCat

OP

I had a severe relapse when I was dx. I couldnt see a jot from my left eye! Im happy to say im back to 20/20 vision now but it took a good 6 months to slowly clear so you really need just need to wait.

Also the injections die down after a while and although the site may be red it wont hurt anymore.

Your body just needs to get used to them!

byhookorbycrook

some arnica tablets will help as well.

Aurora Borealis

Down days are pretty horrible indeed but you're braving a lot at the minute and it takes a while to get used to everything. I hope the relapse passes quickly and you get back to feeling yourself again soon.

barrackali

Hi OP,

Hang in there and keep up with the copaxone injections, I was on that treatment about 9 years ago, didn't work out for me, but worked for many of my friends. I fall into the category of patients where nothing works, I've been on the full menu of treatments with Tysabri being the last...I was pulled off that treatment due to a severe allergic reaction.

Next stop is a visit to Professor Tubridy (yeah Ryan's brother), if you have any questions, let me know!

Beingolderis better

FluffyCat wrote: »

OP

I had a severe relapse when I was dx. I couldnt see a jot from my left eye! Im happy to say im back to 20/20 vision now but it took a good 6 months to slowly clear so you really need just need to wait.

Also the injections die down after a while and although the site may be red it wont hurt anymore.

Your body just needs to get used to them!

VITAMIN E oil is a magical cure all for skin,and internal problems,
where there is irritation ,soreness.

Mod Edit: Hi, Beingolder, welcome to boards. This is a science based forum - I respect your beliefs and I hope they work for you, but I'm not going to allow you to make statements like that in this particular forum. Can Vitamin e cure cancer? Diabetes?.

Please don't post any more links for a while either, until I know you haven't signed up specifically to sell something.

To repeat: I note from your other posts that you are into alternative therapies. We don't allow someone to recommend ANY treatment courses in this forum, traditional or otherwise. Please bear this in mind when posting in future.

pvt6zh395dqbrj

My missus (23) was diagnosed with MS a few months ago. She is now in remission thank god but she was very scared and worried about her symptoms.

For her, eliminating stress was a big help in recovering. She definitely found that all the dietry changes and lifestyle change she made were catalysed by minimising stress.

for what its worth, I'd say don't be afraid to be a little selfish. So if you feel tired or weak then make sure you take the time for yourself!

LegacyUser

Hiya everyone,

Thanks again for all the stories and support. So far, I have not had any issues with injecting, which is great as I thought I would find it tougher.

I got another appointment in the hospital, after a fair bit of harrassing! I was getting so down about my deteriorating vision. My legs are also still so heavy and tingly that I can't really walk around much. I'm virtually housebound, although I've gone out for walks/ lunch with friends a bit- I need a lot of support at these times. I'm in the house so much that it's actually a bit scary to go out.

I met with my consultant to ask for steroids but she refused to give them to me, and listed many side effects from overuse. I felt so sad as I felt it may get sorte. I think I've just finally realised that MS is about waiting for the symptoms to go themselves, and that there is no "quick fix". That was a very sad day!!!

I'm trying every day to manage my stress better by meditating, baths, aromatherapy, massages (just ones from the boyf so far but as soon as I can leave the house alone I'll get professional ones!) etc. I'm also trying to compartmentalise my stress and only allow myself certain amounts of time a day for crying/ worrying about work/ the future.

I'm hoping the symptoms ease soon and I can get back to "me", but until then, I'm working hard on getting well again

Thanks for the messages.

LegacyUser

I spoke too soon! My thighs have decided they no longer appreciate being injected. Last week's sites are still hivey, itchy and bruised looking. I injected into different areas this week but my poor legs have had the same reactions. I've been using a cold pack directly after injecting but it doesn't do much. The Copaxone Support nurse has recommended using Difene gel? Has anyone used it?

Also, I recieved my Longterm Illness Book (with no accompanying info, Google is my only information source). I went to my GP to get the Difene gel prescribed and noted in the book but I was charged for my visit. I don't have a medical card but it was my understanding that anything related to MS (including doc visits, hospital stays, meds etc.) would be covered by the book. Was I wrong?

byhookorbycrook

Use the cold pack before and after injecting. My LTI book only covers meds, nothing else, eg dr visit etc.Also, you may not get anything on the LTI book until it has been submitted to the HSE AND APPROVED. It's not enough just to have it writeen in.

FluffyCat

LTI wont cover difene gel AFAIK. My poor legs didnt like injections either so I stick to stomach now! Make sure you use the cold pad for about 10 mins before the injection. Some people benefit from using a warm facecloth in the same fashion.
You are still pretty early in treatment and it can take a few months before injection sites settle down.
Roll on oral tablets:D

byhookorbycrook

I get the gel on my LTI book, but I use it on sore muscles-am already up to the max orally.

hdunne

hi all, thanks for sharing your stories and updates. I'm 27 coming up to my 2 year anniversary, all going well thank god. Have had one relapse since diagnosis. I have everything crossed on this new drug to help build the mylin back up and the tabet so no more injections! positive thinking is vital i think, and looking after yourself. Gets very scary when I sometimes think about ms and go on some sites so i try not to!

byhookorbycrook

hi Hdunne,agree with some websites, they'd have you depressed.

neelyohara

I'm not diagnosed with MS but perhaps you guys can help! I'm currently on a waiting list to see a neurologist. I hoped to go private but with finances as they are it wasn't possible. Does anyone have any idea how long this could take?

It's somewhat worrying as I was in A&E three weeks ago and they said I'd need an MRI. They asked me to stay overnight but I had somebody with me and it was the early hours of the morning living 20+ miles from the hospital so it just wasn't feasible. The said that it was fine, they would refer me.

Luckily I'm covered with VHI and they covered the cost for an MRI with Euromedic, my GP just asked that I cancel the appointment with the public services when it comes through. Three weeks later and I haven't even got a letter to advise me of when my MRI appointment will be.... so I'm really worried as to how long it will take to see a neurologist.

And just reading through this thread... I did look at the 'official' MS related sites and my symptoms are textbook so I am somewhat worried. I'm telling myself that if I googled the symptoms of the common cold Google would probably tell me I have cancer and not to worry... but it's years of symptoms and no end in sight.

LegacyUser

neelyohara wrote: »

Three weeks later and I haven't even got a letter to advise me of when my MRI appointment will be.... so I'm really worried as to how long it will take to see a neurologist.

If you still have symptoms you are concerned about, I would advise you to go back to A and E, but expect to stay there for ages, bring a book, an ipod and a pillow! On the onset of my first symptom, I was kept in from a Fri night til the Monday when they could actually do the MRI. The waiting list for an MRI or Neuro consultation can be anywhere from a year onwards (as far as I had heard from other patients on my ward). I was very lucky getting diagnosed when I did, as some people I have spoken to seem to have waited years with symptoms for a diagnosis. Don't be one of them!

Also, you may be freaking yourself out, you may not have MS at all, but if you do it's not the end of the world! Get yourself to A and E if you feel the need, and to echo the posts of others, DON'T Google!!!

Good luck x

FluffyCat

God I only ever waited 6 weeks max for an MRI. Suppose it depends on the hospital

neelyohara

NewDiagnosed wrote: »

If you still have symptoms you are concerned about, I would advise you to go back to A and E, but expect to stay there for ages, bring a book, an ipod and a pillow! On the onset of my first symptom, I was kept in from a Fri night til the Monday when they could actually do the MRI. The waiting list for an MRI or Neuro consultation can be anywhere from a year onwards (as far as I had heard from other patients on my ward).

Oh I know, I was there for nearly 8 hours that night and it wasn't even that busy they were just severly understaffed and of course I was catagorised as the least urgent.

The referal to the neuro is for an investigation into headaches, localised numbness and a couple of other things. It has really got worse since September and assuming it was 'stress' I ignored it until a month ago when I couldn't take it anymore.

Looking back over the past number of years there are so many things that have happened that were unexplained. A year and half of complete and utter exhaustion the likes of which I never experienced before or after. I'd sleep at my desk in work, on the toilet, once while sitting in traffic. I'd spend my lunches sleeping in my car and then I'd go home and go to bed. It was put down as 'despression' by a psychiatrist which I didn't agree with. The only depressing factor in my life was that I was a living zombie. The exhaustion was causing the depression not the other way around.

Even now I could sleep for Ireland. It comes and goes. Out of nowhere it will come on and I'll sleep for 30 hours straight given a chance as though my body goes into hibernation and doesn't require food, water or the toilet. Other times I just won't sleep. I'll do everything I can but I'll just lie there exhausted, too tired to even get up and read but somehow just not nodding off.

My cognitive function has decreased severly. I look at assignments and projects I've worked on and I'm amazed that I authored them. Now I make stupid spelling mistakes, I've lost my vocabulary and mid sentence I forget what I'm talking about! I complained to my psychiatrist about this, that I felt that I was dropping IQ points and they said something along the lines of how it wasn't a side effect of my medication, it was interesting and they'd have a look into it (the may have but I've neither seen that person again or heard back from them).

Anyway... it's just lots and lots of little things that are building up. When I do see the neuro I want to put it all on the table and hopefully they can give me an answer.

I really, really hope that the consultation doesn't take that long! I'll see if I can get an idea of the time from St Vincents... or somewhere! If it does turn out to be the case then I might just go back to A&E only this time I'll be prepared to stay if I need to!

Thanks for the reply

msteeq24

Sorry about the rant as my first post but I'm so sick and tired of having to drag myself out of bed every day, slap a smile on my face and tell everybody I'm fine, cause i'm not. Only diagnosed with m.s for 8 months and I feel like there is a bomb strapped to me and I don't know when its going to blow. My stomach and legs look like a war zone from all the injections and my family are burying their heads in the sand about it, I can't even talk to my parents about it because they start getting angry with me or ignore what I just said.

ElleEm

Msteeq, I was diagnosed with MS 4 months ago, and up until about three weeks ago, I felt the exact same as you.
I began to feel better, and you will too.
I was SO tired of people telling me that I would get better, as I couldn't see light at the end of the tunnel. Finally I see the light. I'm still off work, but I am improving at a fast rate.
Try to relax. Spend time doing what you CAN do. It may mean finding new hobbies, or tapping in to old ones you've neglected.
You should contact the MS Society in your area and use them for support. I find them really great, and the support nurse who comes from Copaxone company (the meds I'm on) is great for tips re the injecting. It gets easier, although I go through phases of no reations on the sites, then a week or two of reactions. You may need to use an area that reacts less. For me, my legs react too much to so I don't inject them, but my hips are fine so I mostly use them.

PM me. I'd be glad to chat with you.
Take care x

FluffyCat

I know what you mean. Im 4 years on from being diagnosis and to be honest people still dont understand! My best friend doesnt understand that when I say im tired that I really am tired and when I cant go on a walk because of pain in my legs, people just dont get it!! I strongly believe there is very little education of MS out there when you compare it to the likes of diabetes.

Remember there is no rush to get used to things. The MS society classes the newly diagnosised for 5 years so even im still newly diagnosised.

Its not what people want to hear but getting used to MS does and will take time and if you are p'ed off then just tell people that! I find it helps!

byhookorbycrook

Rant away, you are amongst those who understand. Have you had the "at least it's not cancer "one yet- or what about "but you look so well? crowd. It takes a lot of getting used to... and only you can come to terms with it, but you and in your own time.

I'd also suggest omega oils, vit B supplement and a vit d supplement.

Re war zone, when I was on betaferon I used to do my legs, arms and tum. Only copped why my husband was getting filthy looks on the beach after a few days...

Best advice now is be selfish, look after yourself first and don't force yourself to smile if you don't feel like it.

Take care.

Flopsy

I'm 31 and was diagnosed October 2010. I feel so isolated and scared by it. I feel so bombarded and it's all so much of a shock...I have great days and then the fatigue ( I hate that word) hits and I feel like somebody pulled my plug out. Today was a really bad day, I'm so tired and have felt like I want to run away and hibernate all day. Hard to do when you have 2 little people and a house to look after!
I sleep when our baby goes for his nap but some days it's not enough and want to stay there all day! I'm constantly thinking of all the things I should be doing and getting frustrated because I'm just too tired to budge! I mourn for my life!! A bit melodramatic I know but I had huge plans and now I won't realise most of them!
I had such a terrible time at diagnosis - it was horrendous! There is no easy way to learn you have Multiple Sclerosis (I hate those words too..lol) I started on Copaxone which was horrific. Mood swings, awful pain at injection sites...I didn't stick it for long! Back to my Neuro and he's giving me a bit of time off and starting Avonex in May. Dreading the muscular injections and fluey symptoms but feel I really need to take back some control!
My Husband is absolutely amazing and so supportive which only makes me feel guilty because like today, when I'm having a bad day - even I can't make sense of me!!
Sorry this is so long. I haven't told anybody outside of close family and find it all really hard, I know I'm ranting!

UpCork

I do not have MS myself but have a close family member who does. It is a strange disease in that it is slightly different for everyone I've found. The tiredness must be the worst part of it though. I know that sometimes my relation can't even walk from the bed to the bathroom which is only about 15 steps.

People can have a very blase attitude. He is 10 years down the line, and whilst his movement has deteriorated, he has kept a very upbeat attitude. People do treat him differently though, which I find distressing.

ElleEm

UpCork wrote: »

People do treat him differently though, which I find distressing.

This is something I find hard to deal with. Sometimes people speak to me now as if my brain function has deteriorated to that of a child's. Or people are shocked when they see me cos I look how I have always looked. When you get diagnosed, people automatically think you'll be in a wheelchair, or walking with a stick or whatever. I'm on a mission to create awareness about it as a livable condition!

byhookorbycrook

ElleEm wrote: »

I'm on a mission to create awareness about it as a livable condition!

I feel so strongly about this that I agreed to be featured in a TV programme, where I was shown at work (teaching), training the girls' football team and riding my horse. It's not the end, it's just different.

hdunne

Hey everyone,

i'm on betaferon at the moment but its not makeing much of a difference to relapsing so i'm changing meds. However i can go on Tysabri now which will mean IV once a month, however the tablet Gilenya has just been approved for europe. I need to make a decision and wondered if anyone on here has exp with either Gilenya or Tysabri?

thanks in advance!

byhookorbycrook

Am on Tysabri for the last two and a half years. No relapses and no ill effects. PML is always the big fear,but it depends on what you want and what will suit you better.

http://www.pharma.us.novartis.com/product/pi/pdf/gilenya.pdf

hdunne

thanks for the reply, glad ur relapse free, i'm a little hesitant to go on tysabri dure to time off work, hosp visits and lp when the tablet will be ready for sept latest and the same results, maybe i'll sit tight and hope for the best!

LittlemsSkelly

Hi all

I was diagnosed with RR MS in November and after months of peeking around the forums have decided to post because I'm dementing friends and family with questions and 'what if' situations and the sort so why not do it here with people who are actually experiencing the same thing?

I'm currently experiencing my second bout of the ever so fun optic neuritis which is a slight inconvenience given that I work, I'm in college, and I care for my elderly grandfather and thats all fine, I choose to do all those things. My question for you is do any of you suffer from extreme fatigue? I know every person gets fatigue at some stage, MS or not and I recently had to bring my boyfriend to my neurologist just so he could explain to him that the level of fatigue some of us experience is like nothing else in this world. If any of you have fatigue, do you have any suggestions to overcome it as my neuro wants to start on Provigil, and from doing a bit of research, it doesnt sound too appealing as I'm already having fairly bad side effects from the betaferon and the topamax for migranes. Any advice would be appriciated

Littlems;)

byhookorbycrook

Fatigue in MS is a wipe out,people who don't have it don't understand. I find it takes a good bit of planning, say if I have a busy weekend on the way I take it good and easy for the few days beforehand. I used to go to bed after work, but it totally messed up my sleep patterns, so now I take a power nap on the couch.

HDunne, my neuro does Tysabri on a sunday-and uses one of the day wards, so I know at the start of the year which weekend it will be and this rarely changes.

byhookorbycrook

Little, are you on steroids for the relapse?

LittlemsSkelly

Thanks for the reply. I want to sleep most of the time, but like everyone else, life doesn't really make allowances if you're tired. I'm currently sitting here with an IV in my arm floating between boards and a law essay thats due Monday but creeping around the forums (in a non - creepy way of course) is much more fun.I had my steroid infusion in the neurology clinic in the Mater and they do the Tysabri infusions regularly if that helps at all? Nurses said they have patients who come up from all around the country and they also do the chemo treatments. Do you ever just take a step back and have a look at the sheer insanity of it all?

The provigil is man made speed, which I mentioned as a joke but he was all up for it but its getting to the stage where I have people depending on me (job,education/future career/ grandfather/taxi service for the family etc ).

LittlemsSkelly

Lost all vision in my right eye from april to september 2010, then my left eye showed signs of vision loss so had the LP, 3 days of steroid, 2 MRI's, another scheduled for next week to check for further legions 3 days methyl prednisolone tue, wed and tomorrow then a course of oral predisone tapered off, and eye clinic monday after being seen there as an emergent case yesterday. They can't be sure if its a relapse or just existing symptoms exacerbated by stress (I sound like I'm having a pity party but I'm really not...!) so my third MRI is most likely next thursday.

byhookorbycrook

god, you have a lot to deal with. Stress and MS are not friends,so that's prob not helping. The steroids should help, I hope.

LittlemsSkelly

Ah, just have to suck it up and get on with it. Starting the oral steroids tomorrow so hopefully that'll see the back of it. I think a good attitude is the most important thing you can have when dealing with ms. That and having a little rant every now and again :-)