MS in all its glory

Claire22Cork

I am doing well enough on Gilenya. I came off Tysabri last April after 4 years, I developed that JC virus. Almost a year later and I'm happy with my new treatment. I have started writing a blog, in an attempt to see the humour in how MS effects my life, maybe some of you might enjoy.

http://followyournose22.wordpress.com/2014/02/09/picture-me-on-an-armored-horse-2/

Claire22Cork

I think it can be very hard to accept MS and how it effects your daily life. The unpredictability can be exhausting and in itself 'nerve-wracking'.
Support from friends and family is great, also if there are any local groups near you eg. MS Ireland. Chatting to people who actually know or understand completely what you're going through gives such great support. I was diagnosed 6 years ago and still have days where I find it hard to accept MS.
I have recently started writing a blog about my life and living with MS, trying to see SOME humour in my situation. I am really enjoying writing my blog and I find it therapeutic. I would love to hear what you guys think...

http://followyournose22.wordpress.com/2014/02/14/meet-my-left-arm/

Claire22Cork

I do enjoy life thankfully, and I agree, you're right. To absorb yourself completely in a disease like that would be crazy and self-destructive. Out of the 11 posts on my blog so far, only 2 are directly about MS.

ash23

I would agree with the others. I've accepted the diagnosis but I'm not sure I can accept having MS when I don't know what that entails for me. I think it's more a matter of ongoing acceptance. First comes the diagnosis but after that each symptom and change to your life caused by MS needs to be accepted.

byhookorbycrook

Found out today that Fampyra will not be funded by the HSE/LTI etc from next July,€250 a month to stay on it!!!!!!!!!!!!

pbarr

Is anybody here on baclofen/Lioresal. I was prescribed it today because I suffer from leg twitches when I'm trying to get to sleep at night and in the morning. They're not painful but they do prevent me from getting a nights sleep. I'm just wondering has anybody any good or bad experience of it.

BohToffee

pbarr wrote: »

Is anybody here on baclofen/Lioresal. I was prescribed it today because I suffer from leg twitches when I'm trying to get to sleep at night and in the morning. They're not painful but they do prevent me from getting a nights sleep. I'm just wondering has anybody any good or bad experience of it.

My wife was prescribed it last year in July, we were previously told not to go on it by the neuro, she was driven mad by twitches during the day(not at night).. I soon saw why he was against it but never twigged until she was 2 months in hospital... The legs just went and didn't seem to come back to life... I twigged the drug she stopped taking it then made a near 360 health wise... Stopped it Friday took steps Saturday...
Not looking to put you off the drug but stay alert to changes, everyone's different and all that...

pbarr

BohToffee wrote: »

My wife was prescribed it last year in July, we were previously told not to go on it by the neuro, she was driven mad by twitches during the day(not at night).. I soon saw why he was against it but never twigged until she was 2 months in hospital... The legs just went and didn't seem to come back to life... I twigged the drug she stopped taking it then made a near 360 health wise... Stopped it Friday took steps Saturday...
Not looking to put you off the drug but stay alert to changes, everyone's different and all that...

The consultant who prescribed it told me that if it affected my mobility to stop taking it. I'm only to take one 10 mg tablet at night. Was your wife on much of a daily dose do you know.

val444

I was on it at one point, TBH didn't see any difference at all, so chose to go off it. I learned to live with twitching legs, rather than up the dose and risk the side effects my neuro was pretty sure would follow. After a while, my legs twitched less and less and I find that if I am well-rested, they are almost non-existent.

byhookorbycrook

Emailed all the TDs in the Dáil re Fampyra. Clare Daly, Joe Higgins, Arthur Spring, Michael Moynihan, Joan Burton, Jonathan O'Brien all replied personally,so far, not an auto-response.

"QUESTION NO: 693

DÁIL QUESTION addressed to the Minister of State at the Department of Health (Mr White)
by Deputy Clare Daly
for WRITTEN ANSWER on 25/02/2014

* To ask the Minister for Health the reason the drug Fampyra is not being made available under the drug payment scheme in view of the fact that it proved very beneficial for sufferers of multiple scerosis who had been using it for the past year and a half on trial.
Clare Daly T.D.

REPLY.
The HSE received an application for the inclusion of Fampridine (Fampyra®) in the GMS and community drugs schemes.

The application was considered in line with the procedures and timescales agreed by the Department of Health and the HSE with the Irish Pharmaceutical Healthcare Association (IPHA) for the assessment of new medicines.
In accordance with these procedures, the National Centre for Pharmacoeconomics (NCPE) conducted a pharmacoeconomic evaluation of Fampridine and concluded that, as the manufacturer was unable to demonstrate the cost effectiveness of fampridine in the Irish healthcare setting, it was unable to recommend the reimbursement of the product. The report is available on the NCPE's website (www.ncpe.ie).
The HSE assessment process is intended to arrive at a decision on the funding of new medicines that is clinically appropriate, fair, consistent and sustainable. In these circumstances, the HSE has not approved the reimbursement of Fampridine under the GMS or other community drug schemes. "

Not looking great, but worth getting on to your local TD anyhow.

echo beach

byhookorbycrook wrote: »

In accordance with these procedures, the National Centre for Pharmacoeconomics (NCPE) conducted a pharmacoeconomic evaluation of Fampridine and concluded that, as the manufacturer was unable to demonstrate the cost effectiveness of fampridine in the Irish healthcare setting, it was unable to recommend the reimbursement of the product.


Not looking great, but worth getting on to your local TD anyhow.

Public and political pressure has seen other decisions of the NCPE overturned. The cancer drug known as Ippy comes to mind but saving lives has a much stronger emotional appeal than increased walking speeds.
The real problem for the HSE is the high cost of the drug for the undoubted benefits seen in some cases and the on going costs of monitoring those patients. A price reduction or a commitment from the manufacturers to part fund treatment could see a change of heart.

byhookorbycrook

So if people want to you can use this link to email each Td:
http://www.politicalworld.org/showthread.php?8503-List-of-Email-Contact-Details-for-TDs-Ready-to-CC

echo beach

By all means email every TD but all politics is local and the most likely way to get a response is by contacting the TDs for your own constituency at their local office. A phone call or visit is much harder to ignore than an email.
Details are on the websites of the main political parties or in as old-fashioned a resource as the phone book.

byhookorbycrook

Got a good few answers from using the emails above ,worth a try.

ash23

Hi all,
Hope everyone is doing well. Things are actually really good here at the moment. 2013 was a rough ride because of the diagnosis, relapses and treatment. But (touch wood) haven't had any relapses since starting on Gilenya and feeling great.
I've also been given housing in an area designated for people with disabilities so going forward, if my health gets worse, I'll have a lot of support available.
Work is going well, romance is going well........

Hope it doesn't sound like I'm gloating. I guess I just wanted people who are newly diagnosed to know that things can settle down and improve after diagnosis even though the early days are very hard.

Hope everyone is enjoying the bright evenings!

byhookorbycrook

How are all my fellow MS-ers doing?

embee

Hi everyone,

Mind if I join in? I got a diagnosis of MS last week and I am just in a state of bewilderment.

I had been having symptoms since September of last year but assumed like most people probably do that it was nothing major. Ended up in hospital before Christmas, I had a numb leg and some bladder issues and my eyesight was weakening in my left eye. On that occasion, they ruled out stroke and DVT and sent me home. All over the Christmas period my leg was numb and painful, the eyesight hadn't improved and I was extremely fatigued. I ended up going to see my GP in January who did a series of neurological tests on me, I had little to no sensation in the lower half of my leg and had the Babinski reflex going on big time. Also my legs were "twitchy". She immediately said she thought it might be MS and referred me for admission to the Medical Assessment Unit, where I was to have MRI, bloods and a lumbar puncture done.

The MRI showed no lesions and I was told "You don't have MS, go on home". The opthalmologist confirmed that I had colour desaturation and optic atrophy. I came for a review appointment two months later to be told that I had elevated protein and oligoclonal bands present in the CSF, and that maybe it was MS after all. Was referred to a doctor in the public system for August of this year. In the meantime my symptoms were worsening. I bit the bullet and went for a private consultation with a neurologist, who said I definitely do have MS and he couldn't understand why I'd been told I hadn't. He did also say though that it is notoriously tricky to diagnose.

So that was last Wednesday. He insisted I go to hospital immediately as the spasticity in my right leg was giving me serious problems walking. I had also developed new symptoms (hot tender sensation in left leg). So I went into hospital on Holy Thursday for IV steroids, got out Easter Saturday. The steroids made me feel very sick indeed, horrendous heartburn and heart fluttering a bit, also major plunges in energy levels. I was told they were going to try to expedite my appointment a bit with the public Neurologist. They did repeat MRI's on me (which I had to be strapped down for, so bad was the twitching in my legs). I dunno what the result of the MRI is, no ones told me. Do I just have to sit and wait now? My symptoms have barely subsided and at night my legs are very painful. I can't face the idea of more steroids again so soon but I feel just as stiff and sore as I did before I went into hospital.

I have no idea where to start,, I dunno will it make a difference if I make a pure nuisance of myself. I have an 8 year old daughter and I just want to be feeling better, I don't want her memories of her childhood to be all about Mammy's wonky leg!

I dunno, I have MS and it sucks really. I wish I knew what the plan was and how long I was going to have to wait before I can get on the appropriate medication plan. Am seeing a physio next week re: potentially needing a walking aid. I'm 33, for Gods sake!

Sorry, I am just ranting now. I'm sure once I get used to the idea of it all it'll be easier.... right?

ElleEm

Wow, you have had such a horrible time of it. At least you have a diagnosis now, so you can move forward with treatments and medication. Did they say it was relapsing remitting? Hopefully you will get over this hump and get time off from it to process things. I had a good 6 months of horrible symptoms at diagnosis, so was living day to day. I think I only really started processing the whole thing as I started remitting.
We are a friendly bunch here, so feel free to rant, cry, question and worry with us x

byhookorbycrook

Sorry to welcome you to the club. Not likely you'll get steroids again so soon ,they don't stop a relapse,just help shorten it. I get a lot of the burning legs etc and there are meds that help, I take gabapentin. I would try to get on what are known as a DMD as quickly as you can, these are disease modifying drugs, which, while not a cure, aim to slow down the progress of MS. The good news are that are some really good drugs in the pipeline.
I was 32 and am still teaching 13 years later,our neuro says she no longer many REALLY bad MS cases these days as the DMDs help.

kilco

Hi all,
I am starting treatment for ms next week and wondered have you all told your employers that you have it? Is there any reason to tell them? I have more or less known I had it for about 3 years but had to wait to have 2nd attack to start treatment and be officially diagnosed.

byhookorbycrook

I have always been very open and will tell people who ask why I limp, have falls, foot drop or whatever, but that's a personal choice. Will it impact on your work? What about health and safety?

If you drive, have you informed your insurance company?

kilco

I have informed the insurance company, doesn't affect my work really but don't know whether the treatment will in terms of side affects but it doesn't bother me people knowing,I've told a few colleagues but not the boss, it's a bog compnay. I drag my leg a bit sometimes, main symptoms are leg weakness and fatigue but it's the fatigue that I find the worst.

byhookorbycrook

If you have relapsing/remitting, which from your post I presume you do, unfortunately you don't know when a relapse will strike. Might be no harm to have the boss aware of your condition.

What treatment will you be starting?I started with Betaferon and the flu side effects had me wiped out for the day afte for a good few months.

Lou.m

I don't have MS but I just want to say you are extremely strong brave people. I am impressed and inspired by all of your stories.

I wish you all much happinessxx

ash23

Kilco, I was off for a good while when I had my first *big* relapse which lead to diagnosis so people knew something was up and then I was in work while awaiting diagnosis etc so my close colleagues knew and I also informed HR.

I find it easier that they know as there is no issues with being off sick or the amount of absences I have etc. In other words, they cut me a bit of slack and god knows when you are mid-relapse the last thing you want to be stressing over is work!

Of course, where you work also has a bearing on whether it's good for them to know. My last employer would have probably found a way of getting rid of me if I'd gotten it when working there. They weren't very understanding or decent. My employer now is a US company and they are very very careful with regards to how they treat staff.

val444

Hi,

I told my boss pretty much straight away and they have always been great about it. To be fair, I am very careful to not let it affect my work and I have been lucky enough that my symptoms have always allowed me to do that. Again, I work for a big American company and I do think that might help!

If it will stress you out, keeping it a secret, then I would tell. I am totally open about it, and always have been, and I find that much much easier.

kilco

Thanks for all the advice, I think I'm going to be visiting this forum a lot. I'm starting rebif, so fingers crossed it all goes well, my nuero says there should be tablets available soon so hopefully I might not have to inject for that long.I also was reading up about vitimans b and d ,do any of you take them or find they help the fatigue at all? I'm not a great one for vitimans, I usually buy a box and they sit in the press for months.

ash23

kilco wrote: »

Thanks for all the advice, I think I'm going to be visiting this forum a lot. I'm starting rebif, so fingers crossed it all goes well, my nuero says there should be tablets available soon so hopefully I might not have to inject for that long.I also was reading up about vitimans b and d ,do any of you take them or find they help the fatigue at all? I'm not a great one for vitimans, I usually buy a box and they sit in the press for months.

When I was diagnosed (end of 2012) my neuro was a bit sceptical about whether there was any benefit to taking Vit D. When I was back with him in June of 2013 he said that he'd been at a conference where it had been discussed and he was saying that based on proof portrayed at the conference, Vit D in tablet form was of benefit for MS and prescribed it to me.

I started on Copaxone but it wasn't working for me so I've been on Gilenya tablet for about 6 or 7 months now. It's going great and no relapses since starting it (touch wood).

I don't really suffer from fatigue so I can't say whether Vit D helps with it or not, sorry. Although I've not been taking it for the last couple of weeks (keep forgetting to collect the prescription) and I've been shattered but I'm moving house aswell so it's all inconclusive really :P

fungie

I take vit D, its cheap and causes no harm and probably has some benefit regards ms. Its a no brainer for me.

Try to get the 5000IU vit D tablets. Im trying to get my Vit D level up to 150nmol/L measured by blood tests a couple of times a year.

embee

ElleEm wrote: »

Wow, you have had such a horrible time of it. At least you have a diagnosis now, so you can move forward with treatments and medication. Did they say it was relapsing remitting? Hopefully you will get over this hump and get time off from it to process things. I had a good 6 months of horrible symptoms at diagnosis, so was living day to day. I think I only really started processing the whole thing as I started remitting.
We are a friendly bunch here, so feel free to rant, cry, question and worry with us x

I've had these symptoms now for 6 months with no relenting in their severity. New symptoms keep appearing... the neurologist and GP are saying that on the surface, it appears to be progressive, which was not what I wanted to hear. Still not on any treatment, have decided to just go private because I can't tolerate these symptoms for much longer. My GP suggested more IV steroids - but it has been only a month since I had the first course, am reluctant to overdo it on steroids but finding it increasingly hard to walk. I had to do a VER test yesterday in the Eye and Ear Hospital, have any of ye had that done? I felt horribly nauseous after all those black and white squares.