MS in all its glory

Salmotrutta

Great news on Fampyra for those that need it. Great also to know that those of us who currently don't need it will have access to it in the future if we do.

I wrote to my local TDs in 2014 on this issue (Galway West constituency). Only one of them - Noel Grealish - was bothered to reply, and he made a representation (not his first) to the minister about it. Not a single word from any of the others - Brian Walsh, FG, Sean Kyne, FG, Derek Nolan, Lab and Eamon O'Cuiv, FF can all go and take a running jump when they come looking for my vote next year.

byhookorbycrook

I had an email from a local politician, more or less claiming credit, when he sent me one generic email.

I had been in Leinster House on the issue and met with members of the health committee and anyone we could get to listen. I had good cross party support outside this constituency , Jerry Buttimer and Regina Doherty , Sen. Marie Maloney,Tom Fleming, Johnathon O' Brien, Arthur Spring. Michael Martin actually called to the house to me. I am apolitical, I would vote for satan himself so MS people could get what we need. It's a bit annoying then to receive that kind of email. The important thing is that we will now be able to access it. I have paid over €4,000 for it , many others who need it,couldn't.

I had my infusion today and it's all a bit up in the air, how do you prove who it benefits? How soon for the funding? I presume a neuro will be the one who would hold the most sway. At least it's a step in the right direction.

sarumite

I was diagnosed on Thursday. I had some double vision back in June that lasted about 2 weeks. The MRI showed up 10 lesions on my brain. I currently don't have any symptoms other than slight double vision at the extreme periphery on my left eye. Outwardly I am putting on a brave face, but I find myself alone and thats when I breakdown. I assume I am like many people on here whereby its the uncertainty of the condition and how it will affect you that causes the most anxiety. Since I am currently in good health I guess there is still a little bit of denial in my head. Today was the first day since finding out that I have been able to think about something other than the diagnosis.

Salmotrutta

Hi Sarumite. Welcome to the club no one ever wanted to be in. Has your neuro discussed medication with you yet? The new drugs are so effective now that your prognosis is a lot better than it would have been only a few years ago.
It took me quite a while to get back to normal after diagnosis too, it's pretty much all you think about when it's new to you, but really after a while you will just get on with things, and life will return to normal. It's good to talk, so make sure you have someone to talk to about it when you're feeling down. Plenty of good people on here in the same boat so feel free to chip in and ask questions etc

sarumite

I have a meeting with the Neuro tomorrow to discuss things. At the moment my understanding is that she wants to wait and do an MRI in 4-6 months (assuming no relapses) and decide from there. Its been an incredibly tough few months for me as I lost my Job and I am now living in the UK (on a 2 year contract). I got the double vision two days after finding out my mum has inoperable cancer. I Guess things can always get worse.

byhookorbycrook

God, you are having it rough. The current thinking is that the sooner you can get a disease modifying drug, the better. Have a google on Lemtrada.

BohToffee

Hi guys, anyone here have SPMS fancy letting me know what we have in store? OH just been advised she has progressed rather rapidly from RRMS. PM if you feel thats the better option cheers, we are v worried about what the future holds for us.

byhookorbycrook

What treatment is she on?

BohToffee

byhookorbycrook wrote:

What treatment is she on?

Nothing at the moment, started on betaferon, then tysabri but was susceptible to the infection so off that after the 2/years. Then received 2 blasts of campath so nothing now apparently nout left for her.

byhookorbycrook

Pm sent

Roxy12

sarumite wrote: »

I was diagnosed on Thursday. I had some double vision back in June that lasted about 2 weeks. The MRI showed up 10 lesions on my brain. I currently don't have any symptoms other than slight double vision at the extreme periphery on my left eye. Outwardly I am putting on a brave face, but I find myself alone and thats when I breakdown. I assume I am like many people on here whereby its the uncertainty of the condition and how it will affect you that causes the most anxiety. Since I am currently in good health I guess there is still a little bit of denial in my head. Today was the first day since finding out that I have been able to think about something other than the diagnosis.

Hi Sarumite,
Sorry to hear about your diagnosis. I was only diagnosed this year in May myself following some lovely double vision too. You'll have days where all you can think about is MS and then days where it barely enters your head, just remember that there's no right or wrong way to deal with it - take it as it comes. I personally find it easier to focus on the here and the now and try not to worry too much about what the MS future holds, it can be hard some days but ultimately, MS or not, none of us really know what's around the corner and we can spend more time worrying about things that may never happen.

One thing I would say is insist that you get put on medication. I was on medication less than a month after my diagnosis. I mean they know it's MS so why wait? I opted for Copaxone and luckily haven't had any side-effects from it to date. I'd also say get in touch with MS Ireland. They can meet up with you have a chat and I've found them to be great in my area. There's also coffee meetups etc and it's great to meet other people in the same boat and know that you're not alone. Best of luck

Lollipops23

I was unofficially diagnosed last week (not really anything else it could be). I'm in tomorrow for a more definitive MRI.

I'm only 28- not that this never a "fair" thing to have, part of me is so, so, so angry. Even though it's at a *very* low level, this is still something I'm saddled with for the rest of my life.

I'm sorry, I'm still in that first stage of shock- it wasn't an expected result of an MRI I had for something else. Even my poor doctor was stunned, and almost as upset as me.

BohToffee

Lollipops you are 100â„… correct in saying this is not fair. And you are right to be angry.

As you will see from my posts it is my wife (diagnosed at 24) who has ms not myself but from what I have seen and read etc the sooner you adapt your lifestyle and diet to deal with the diagnosis the better but everyone is different.. And everyone has an opinion. Only one thing is certain with this baxtard of a condition is that you'll have good and bad days and as Ronan Keating said 'life is a rollercoaster'

Dont apologise for having a rant that's what it was set up for.. Ask what you want the ladies and gents on this thread who are in your exact boat are extremely helpful. As said before use msireland, and my bit to add is don't trust Google.

byhookorbycrook

Lollipops, sorry to have someone else join our rather awful group.We rant and rave here to people who understand .We don't say "But you look SO well""My granny's neighbour's aunt had that and she (insert mad idea here) and was cured" and we certainly don't say "Ah, it could be worse, you could have ...."
Ask about getting on a treatment as soon as you can, the earlier you can get some form of disease modifying drug, the better. There is no cure YET, so in the meantime, a drug that slows things down is essential.

Lollipops23

Thanks guys! Just had my second MRI this morning, and got a letter from the hospital with my appointment for the neuro dept on the 1st Oct. Not sure if I'll have an update before then.

It's only 1 week since I found all this out- it already feels like months ago!!

sarumite

Thanks Roxy12. I think the first two weeks I struggled to really get to grips with the diagnosis. I have been trying to concentrate on the here and now (thankfully two weeks of sub par performance at work means that the here and now is a little bit more urgent!)

I moved to England in April just gone so I am currently being treated under the NHS. My neuro told me that the NHS doesn't give treatment until you show more severe signs. The neuro said that had I been in other countries I would be put on treatment straight away, but there are new guildlines from the NHS that say I must wait. I will admit, not being on anything is causing me a little anxiety. I also have the complication now that since I am less than 12 months in the country I need to be assessed for access to long term treatment on the NHS. I'm originally from north county Dublin so I think I will contact MS Ireland anyway as I try and get home as much as possible.

sarumite

Lollipops23 wrote: »

Thanks guys! Just had my second MRI this morning, and got a letter from the hospital with my appointment for the neuro dept on the 1st Oct. Not sure if I'll have an update before then.

It's only 1 week since I found all this out- it already feels like months ago!!

I know how you feel. Its been less than three weeks since I found out. I have notice this week I am doing a little better than the previous two weeks. I was also very angry, which I was kind of surprised at. I started getting angry at myself and blaming my myself and wondering if there were things I could have done differently. Now after two weeks of being angry, scared but most of all in a state of shock I have hit a steady state of it drifting into my head (especially at first thing in the morning and last thing at night) but then getting on with my life during the day.

BohToffee

Sarumite a friend of mine is from the north and treatment here is free even though his perm residence is Dublin. Similar case may be in place for you if you were to be diagnosed in Ireland also? May be worth looking into anyway..
If you are home often and put on a treatment like betaferon you can get a months supply and take back to UK?

Closov

sarumite wrote: »

I moved to England in April just gone so I am currently being treated under the NHS. My neuro told me that the NHS doesn't give treatment until you show more severe signs. The neuro said that had I been in other countries I would be put on treatment straight away, but there are new guildlines from the NHS that say I must wait. I will admit, not being on anything is causing me a little anxiety. I also have the complication now that since I am less than 12 months in the country I need to be assessed for access to long term treatment on the NHS. I'm originally from north county Dublin so I think I will contact MS Ireland anyway as I try and get home as much as possible.

I'd definitely get in touch with MS Ireland too, the more support the better, and if you ever move back it'll be one less thing to do.

You've probably read this already, but it might give you some comfort regarding the treatments. Activity on MRI scans can't be linked 1:1 with disease progression or disability. And while the DMDs do reduce activity seen on MRIs, there's very little evidence that they delay time to disability. On the other hand, all of the DMDs are serious medications, so maybe the NHS consider the risk / benefit ratio insufficient until it's clear you don't have benign MS. Personally, I'd be kinda happy if they'd considered my case "un-severe" enough *not to start medication straight away

byhookorbycrook

I kind of disagree, Closov. I have been relapse free since starting Tysabri and have avoided damaging relapses that impacted on my legs.

Closov

byhookorbycrook wrote: »

I kind of disagree, Closov. I have been relapse free since starting Tysabri and have avoided damaging relapses that impacted on my legs.

Definitely working for you then BHOBC! These conclusions always comes from large numbers of people, some get a great response and others get none. That's why they make all the fuss about 'statistical significance'. Delighted for you though - you probably went through a lot of hardship before getting on Tysabri. Hopefully Sarumite never gets to that stage

echo beach

Closov wrote: »

These conclusions always comes from large numbers of people, some get a great response and others get none. That's why they make all the fuss about 'statistical significance'.

That observation is spot on. What is needed now is a way of identifying those who will benefit from the treatment. At the moment it is often case of 'try and see' or trial and error. It is far from ideal but the NHS approach of not giving it to ANYbody because EVERYbody won't benefit is flawed. It isn't always possible to take a population result and apply it at an individual level.

Closov

echo beach wrote: »

...the NHS approach of not giving it to ANYbody because EVERYbody won't benefit...

Is that really (officially or unofficially) what they are doing? It looked like Sarumite was given medication because they didn't have any symptoms and still have a chance at having a mild or even benign form. Or is that the default treatment by the NHS?

(I know it's impossible to really know unless you're on the inside. I know one doctor in England and they haven't seen an actual patient in about 10 years because of all the corporate structuring. Yet they sit on committees to make decisions that effect patients all day)

Salmotrutta

When I had my first relapse I was told it was "probably" benign MS. It took a second relapse and more lesions to be properly diagnosed. If I had been diagnosed at the start and got treatment I could possibly have avoided the second relapse that did some lasting damage to my hands. Don't get me wrong, I'm very glad I'm on medication now, but if I could go back I would push for a proper early diagnosis and to get on DMD as soon as possible. Delaying treatment because not everyone will benefit is only causing pain and distress to people who would have benefited if they had been treated, not to mention worsening people's condition and long-term prognosis IMO

byhookorbycrook

My neuro says that she sees far fewer severe cases of MS since the DMDs came online. I certainly don't believe that withholding treatment is positive. I am only sorry I didn't get Tysabri as a 1st line treatment.

Closov

On the other side of the coin, I met a woman who suffered depression as a side effect but nobody wanted her to stop. She had to make the choice between not being able to get out of bed with depression and taking a chance on not being able to walk (she still walks fairly well, in her mid-sixties).

I talked with a young American man who is an epidemiologist and has tried 3 different DMDs, but found that side effects and risk / benefit were not worth it for him.

Then there's all the people with Progressive, who can't take anything at all.

Nobody wants to threaten anyone's medication, but to be supportive of those who have none.

echo beach

byhookorbycrook wrote: »

My neuro says that she sees far fewer severe cases of MS since the DMDs came online.

That is true but here are other factors, like better diagnosis and support, so all the improvement isn't down to the DMDs. Even the existence of effective treatments gives hope, something that was missing, and that hope in itself has a positive impact. Taking away hope, by saying a patient can't have treatment for whatever reason be it cost, side-effects or the progression of their disease is a huge blow.

Lollipops23

I'm still unclear about some of the lingo here guys- what are DMDs?

Also, how will they know if mine is progressive or relapsing/remitting?

byhookorbycrook

DMDs= disease modifying drugs. These drugs may help slow down MS progression and or/ relapses. The majority of people start with relapsing remitting MS. The only way to see what type of MS you have is by observing what your health is like over a period of time. Primary Progressive "is characterized by steady worsening of neurologic functioning, without any distinct relapses (also called attacks or exacerbations) or periods of remission. A person’s rate of progression may vary over time — with occasional plateaus or temporary improvement — but the progression is continuous. "

http://www.ms-society.ie/pages/living-with-ms/what-is-ms/first-questions

sarumite

i mentioned to the Neuro about the fact that I am not on anything at the moment. As it is, we are sticking with the 'monitoring, no treatment' approach. I have another MRI booked for early December and I won't be seeing anyone until then.