MS in all its glory

Salmotrutta

Spotted this on a blog by Conor Devine, a MS patient/advocate/athlete in NI. I can't post links, but if you add www to the following you should get to it:
conordevine.com/conordevine-blog/2015/5/16/futures-bright-for-ms-community

Although over the last fifteen years there has been significant progress made in the MS world in general, in regards to the primary progressive nature of the disease, very little to no progress has been made at all. However that was until recently. I can exclusively reveal that I was advised last night by one of the top pharmaceutical bosses that very recently a small company in France has produced data that suggests they have found a drug combination that can potentially halt the progressive nature of the disease. More tests are pending but if this is true, then this is ground breaking news for the MS community and will be a game changer that will give great hope to those MS'ers who are affected by the very nasty and difficult primary progressive phase of MS.

slimworld

Hi Jenni,

i have MS five yrs now. best advice i can give is to go to Barringtons in Limerick for an MRI Scan of the skull and vertebrae (not sure of the medical term). I find them fast and they give you a CD of the results before you leave for your GP to read and they also send your GP the hardcopy of scans. It costs about €250.

Best of luck with the scans,

byhookorbycrook

JenniFurr wrote: »

I was admitted to hospital for tests last week because I had lost some vision in my left eye. After a few tests from an opthamologist over several days they determined it was optic neuritis. They called a neurologist for a consultation and I was told this could be MS. I was initially admitted to hospital because it would mean I could get scans done more quickly. After a week the opthamologist discharged me after no tests for MS were done. Neurology told me I needed an MRI and a lumbar puncture and seemed a bit more suspicious of MS after taking my history of symptoms: forgetfullnes, fatigue, twitching muscles, recent bowel and bladder problems, loss of patellar reflex in left knee, optic neuritis, random pain in limbs... I could go on! ...

don't know whether my constant eye and leg muscle twitching are a symptom of MS or stress! I feel like a right hypochondriac

Hi Jennifurr, the highlighted bits above are certainly MS symptoms, but there are a number of things that can mimic MS too. Have they said they will refer you for an MRI? Is there a plan to do an LP? I'd be asking those questions. I get that your hospital are doing their best, but if it is MS, you need that confirmed and a treatment plan sorted as soon as possible. I'm going to ask a mod to merge this thread with the main MS one, so more people will be able to share their experiences too.

Lollipops23

I have my first proper appointment with the MS specialist in The Mater on Thursday. My Neurologist has been amazing and really communicative so far, so I'm really hoping the specialist is the same.

I know there's a chance they won't put me on medication yet- something I thought was great at first, but now I'm wondering are they going to just wait for a relapse before they do? Are they going to wait it out and play chicken with it?

I really want to be the other side of the appointment and in the know a bit more. I can't stand this being in limbo.

fungie

Been experiencing some very mild dizziness over last few days, hasnt stopped my from doing normal things. Not actually diagnosed as only had one flare up a few years ago. Question is, is this common?

discobeaker

Lollipops23 wrote: »

I have my first proper appointment with the MS specialist in The Mater on Thursday. My Neurologist has been amazing and really communicative so far, so I'm really hoping the specialist is the same.

I know there's a chance they won't put me on medication yet- something I thought was great at first, but now I'm wondering are they going to just wait for a relapse before they do? Are they going to wait it out and play chicken with it?

I really want to be the other side of the appointment and in the know a bit more. I can't stand this being in limbo.

I'm in the mater aswell under prof tim lynch. He is a lovely guy and the team in the mater are wonderful. I was diagnosed end of sept 2012 and when I went in for the meeting with the neuro I was sat down and told everything about ms. He went through all the different medications and I was given a lot of info and was told to pick one and come back in Afew weeks with my choice. So I came back after 2 weeks and told them I wanted to go on Copaxone. First week in January 2013 I was taken in to do 5 days IV steroids,I didn't need them but the doctor said it would be good to do to build me up abit then at the end of January I met with the Copaxone nurse so all in all it was about 3 to 4 months roughly before I was put on treatment.

The limbo bit between getting told your sick and getting on medication was a tough one for me but you are in good hands in the mater. If you need anything,feel free to pm me

whatever76

bit of a random question here around MS early sings -anyone ever experience very random ( approx. 4 episodes over 4 years) tingling sensation in left cheek ( its the best way I can describe it) - only last 2/3 seconds but just feels like some sort of nerve ending electric shock ?

Lollipops23

whatever76 wrote: »

bit of a random question here around MS early sings -anyone ever experience very random ( approx. 4 episodes over 4 years) tingling sensation in left cheek ( its the best way I can describe it) - only last 2/3 seconds but just feels like some sort of nerve ending electric shock ?

I've had lots of very mild (not at all painful) muscle spasms and tingles, not sure if it's related to MS though.

byhookorbycrook

whatever76 wrote: »

bit of a random question here around MS early sings -anyone ever experience very random ( approx. 4 episodes over 4 years) tingling sensation in left cheek ( its the best way I can describe it) - only last 2/3 seconds but just feels like some sort of nerve ending electric shock ?

You could have neuralgia, which isn't necessarily MS related.

Lollipops23

Right, so I'm officially joining ranks of this thread now.

Met with my neurologist (Dr Anna Feeney) yesterday. Turns out there's a load of lesions dating back several years on my brain scan. They're starting me on second line treatment in a few weeks.

I got my bloods done for JC Virus testing. Can I ask if anyone here tested positive, and if so how it's affected their medication/treatment?

byhookorbycrook

Sorry to hear you are joining us. As you are asking about JC, I presume this means you will be getting Tysabri. I am on Tysabri since Jan 2009 and have been relapse free since then. I am JC+ but am determined to stay on Tysabri until something better comes along.
The big risk with Tysabri is PML and being JC+ means you are at greater risk from it, but for me the benefit far outweighs the risk. If you are JC+ you will be monitored even more closely. In some places , JC+ people are taken off Tysabri after two years, but it depends on the individual centre. I would grab Tysabri with both hands, it's the best there is at present. I'd also ask about Lemtrada, it's coming on stream here now and even though it hasn't as much stats behind it, it is thought that it may prove better than Tysabri.

Lollipops23

Is that the drip infusion? I'm leaning towards fingolimod at the min (daily tablet) as a) my insurance won't cover the drip and b) I don't want to spend a day a month in hospital.

Sunny Dayz

Sorry do you mind me asking what is JC+ ? My husband has MS and I've never heard this term. He's on Gilenya btw.

Lollipops23

Sunny Dayz wrote: »

Sorry do you mind me asking what is JC+ ? My husband has MS and I've never heard this term. He's on Gilenya btw.

The JC Virus- apparently over half the population has it, but it's not harmful. Being on the meds for MS can mix badly with it (they don't know why) and lead to PML that causes brain inflammation apparently! So you can still take the meds but they monitor you a lot more closely if you're JC+.

Sunny Dayz

Lollipops23 wrote: »

The JC Virus- apparently over half the population has it, but it's not harmful. Being on the meds for MS can mix badly with it (they don't know why) and lead to PML that causes brain inflammation apparently! So you can still take the meds but they monitor you a lot more closely if you're JC+.

Thanks. I know the hospital did blood tests on my husband and asked him if he had ever had certain illnesses, I think chicken pox was one they asked.

Salmotrutta

Lollipops23 wrote: »

Is that the drip infusion? I'm leaning towards fingolimod at the min (daily tablet) as a) my insurance won't cover the drip and b) I don't want to spend a day a month in hospital.

I'm on fingolimod (Gilenya) for the last year. It was the first drug I was put on and it's working out great so far. I was JC+ with a high JC titre so the neuro didn't want to put me on Tysabri.
Zero side effects and all my MRI scans have shown no new lesions and even reduced size of existing lesions. Just have to be a bit more careful about colds and flu - get the flu vaccine, see your GP if you get a cold and get on antibiotics early, as your immune system is less effective once you are on the treatment.

fungie

Anybody ever find it tough to get hold of your neuro team? I may be having a relapse and was told to contact the team if anything happened but have been given the run around by a member of the team saying they cant see me until January. I dont view it as a emergency so dont want to clog up the ED. Just asking for a bit of advice.

Lollipops23

fungie wrote: »

Anybody ever find it tough to get hold of your neuro team? I may be having a relapse and was told to contact the team if anything happened but have been given the run around by a member of the team saying they cant see me until January. I dont view it as a emergency so dont want to clog up the ED. Just asking for a bit of advice.

Do you have an MS nurse? If not, do go to A&E.

fungie

I have no idea what a ms nurse is. It may come to going to the ED on Monday.

Lollipops23

fungie wrote: »

I have no idea what a ms nurse is. It may come to going to the ED on Monday.

A nurse that specialises in MS- the Mater has Jacqui Smith.

byhookorbycrook

We don't have an MS nurse, but the neuro has a nurse who is pretty much an MS expert.Likewise we don't have a neuro "team" just the neuro and neuro nurse.

byhookorbycrook

The only meds for MS that are associated with PML risk at present are Gilenya and Tysabri.

byhookorbycrook

Lollipops23 wrote: »

Is that the drip infusion? I'm leaning towards fingolimod at the min (daily tablet) as a) my insurance won't cover the drip and b) I don't want to spend a day a month in hospital.

You can get Tysabri as a public patient. It's not a full day, I'm in and out in 3 hours. Even it it were to be a full day, for me, the alternative is too scary. My last two relapses before Tysabri did a lot of damage to my "good leg", I hate to think what I'd be like without it now.

Salmotrutta

byhookorbycrook wrote: »

The only meds for MS that are associated with PML risk at present are Gilenya and Tysabri.

I think you should qualify that statement with the relative risk, in case someone considering treatments equates the two as having a similar risk. AFAIK only one case of PML in a Gilenya patient has been found, whereas the number in Tysabri is far higher. If it wasn't a far greater risk I'd be on Tysabri myself.

Lollipops23

byhookorbycrook wrote: »

You can get Tysabri as a public patient.

The Mater can only take 15 people at a time on the public scheme- they currently have that quota.

byhookorbycrook

Salmotrutta wrote: »

I think you should qualify that statement with the relative risk, in case someone considering treatments equates the two as having a similar risk. AFAIK only one case of PML in a Gilenya patient has been found, whereas the number in Tysabri is far higher. If it wasn't a far greater risk I'd be on Tysabri myself.

3 cases to date, I think?
The first two years of Tysabri are considered lower risk for PML. There isn't as much data on Gilenya as exists for Tysabri, so for me, I'd be going for the harder hitting medication if I could.
There have been 13 deaths on Gilenya due to cardic issues too.

http://www.drug-injury.com/druginjurycom/2015/02/gilenya-ms-drug-safety-multiple-scleorsis-medications-side-effects-cardiac-risks-heart-problems-deaths.html

Bottom line is that the hard hitting meds have hard hitting side effects. I think each of us needs to inform ourselves as much as possible on all of the risks and benefits and choose what best helps us.

byhookorbycrook

Lollipops23 wrote: »

The Mater can only take 15 people at a time on the public scheme- they currently have that quota.

Ah feck, that's so wrong.

byhookorbycrook

Just to let anyone considering Fampyra know that it's going to take a few jumps through hoops. It's not as simple as getting a script, you have to do walking speed tests- before and after and demonstrate an improvement of 20%. Sooooo, you can't get it for free until you actually get it for a month, then you have to be timed walking and then all the paperwork (and apparently there is lots! must then be approved by the HSE. FFS

Zzippy

byhookorbycrook wrote: »

3 cases to date, I think?
The first two years of Tysabri are considered lower risk for PML. There isn't as much data on Gilenya as exists for Tysabri, so for me, I'd be going for the harder hitting medication if I could.
There have been 13 deaths on Gilenya due to cardic issues too.

http://www.drug-injury.com/druginjurycom/2015/02/gilenya-ms-drug-safety-multiple-scleorsis-medications-side-effects-cardiac-risks-heart-problems-deaths.html

Bottom line is that the hard hitting meds have hard hitting side effects. I think each of us needs to inform ourselves as much as possible on all of the risks and benefits and choose what best helps us.

It might be more informative for newly diagnosed MSers considering medication to put the figures for Tysabri alongside those you quoted for Gilenya: 517 cases of PML in Tysabri patients as of December 2014, with a 23% mortality rate (117 deaths) and a poor functional outcome for those who survive PML. http://multiple-sclerosis-research.blogspot.com/2015/01/clinicspeak-natalizumab-pml-update-q4.html

Lollipops23

byhookorbycrook wrote: »

There have been 13 deaths on Gilenya due to cardic issues too.

I'll be going in to get hooked up to an ECG for 6 hours after I take my first Gilenya tablet, to make sure my heart rate stays stable.

I wasn't aware there were less cases of PML associated with Gilenya- it makes me feel a tad better about my decision tbh!!