MS in all its glory

byhookorbycrook

Ours will always ring or call you to face to face if the news isn't good. A letter = Happy days!

vmb

Today it is going to be my 3rd day on Lemtrada

So far, so good.

Some skin rash, but it is normal so I don't care

byhookorbycrook

Did you get piriton?The Lemmies in ours did as a matter of course, I think. Is this your first round?

vmb

Yes, it is my first year.

During the first 3 days, I've been receiving 1gr of steroids, then hydrocortisone (I guess is the piriton you mention) and then lemtrada.

Yesterday I received a extra shot of hydrocortisone but today the rash is still here.

Today should be the 4th day, but yesterday I was told that if the rash is still here, the treatment will continue on monday, that would be a 3 day pause

I am afraid about to lose effectivity with the treatment, but the neuro told me that it does not matter.

I've improved a lot, but it is just because I was having a relapse and the storids always help.

With alemtuzumab I hope to have time to recover those long term problems that haven't had time to be fixed between all of my relapses.

Good luck to everybody with this end of summer

vmb

****ing rashes, my 4th dose will be postponed till monday.

I feel really angry, i've been admited for 7 days and it is going to be at least to the next tuesday / wednesday. It is more annoying because I feel ok, blood tests are ok, but I have big rashes.

Of course, Doctors know what they are doing so I have to deal with it.

I just hope that this effort will have a good outcome and my ms will be under control in the future.

byhookorbycrook

Fingers crossed for you.

embee

Six weeks post Lemtrada round one and I still feel like absolute rubbish. I've new symptoms that I've never had before and flares of old symptoms. I'm not allowed to have any more steroids as I've had huge amounts of them. Am having a bone density scan in a couple of weeks to see if they're gone spongy from 13 courses of IV steroids in two years. You're only supposed to have three or four in that timeframe so am expecting the bones not to be in great shape. Legs are unbelievably stiff and sore, numbness in hands, unbelievable fatigue.... God, MS is such craic.

vmb

All the best embee!

kieranfitz

So, with the Paralympics starting today, are ment to cheer for the Irish athletes or the ones with MS?

vmb

Hi everybody, hope you have all had a great summer .

I’m welcoming the end of summer , no more heat problems.

It's been 2 weeks since my lemtrada treatment finished and I am not too bad.

Good luck to everybody, specially those who are suffering relapses or going through a rough time!

byhookorbycrook

Dry heat suits me. it's hot and humid that kills me and also very cold weather. ideally, I should live in the Seychelles!

99cone

val444 wrote: »

Hi all,

I am about to begin my first ever course of IV steroids on Monday. Mad panic coz I am getting married in three weeks! Anything I should be mindful of? Can I go back to work for the day afterwards? Do I need to bring someone with me?

Thanks!

hi i had my steroids last month I felt fine straight afterwards but over the next few days I had severe headaches and I collapsed in the shower.my nuerologist told m this is a common side effect so I would recommend sitting in the shower ,not locking the door and telling someone your getting a shower do the first few days after the steroids.drinking full sugar coca-cola will help with the headaches

Lollipops23

I have my first check up MRI this Friday. Am quite nervous about the results, as my symptoms haven't been great lately.
While speaking to a colleague the other morning she started vibrating. I'm 90% sure she herself wasn't vibrating, rather my vision was f**king with me.
I've also had some pain and plenty of fatigue.
I'm on Gilenya right now, does anyone know what the next step would be medication-wise if my scans show continuing flares?

byhookorbycrook

I'd push for Tysabri at least or Lemtrada. Hit the b@stard hard.

vmb

It seems Lemtrada is being considered as first line treatment in some countries.

I also think in 1-2 years we will have new drugs as ocrelizumab, really powerful with small side effects.

Another thing being researched is a vaccination against jc and PML.

It would be amazing being able to have tysabry without risks!

The near future for the inflamation side of MS looks promising.

I also agree with powerful drugs if the symptoms or MRIs are not great - hit the b4stard hard!!!

Although If everything is stable, I would have more concerns, as stronger medicines have bigger risks

failinis

Sorry to read some people have been having bad medication side effects or flare ups.

---

Not sure if people seen it on the anxiety/depression thread but my neurologist sent me a letter saying my blood test for Fredrich Ataxia was negative :D:D

However she went on to say they have further tests to do for other types of ataxias (so I am not out of the woods yet) but going on symptoms FA was the main suspect for me.

If they all (hopefully) come back negative its a huge relief - but then again I am having bad neurological symptoms of unknown origin which is never good?

---

Hope everyone here is holding up okay.

Lollipops23

Tysabri isn't really an option for me unfortunately- the HSE programme is full and my health insurance won't cover it. My neurologist was between it and Gilenya this time last year, so that's how I know!

I've also started attending a psychotherapist in recent weeks to help cope with the anxiety that's accompanied all this fun. So far so good!

embee

Lollipops23 wrote: »

Tysabri isn't really an option for me unfortunately- the HSE programme is full and my health insurance won't cover it. My neurologist was between it and Gilenya this time last year, so that's how I know!

I've also started attending a psychotherapist in recent weeks to help cope with the anxiety that's accompanied all this fun. So far so good!

Have you been given the option of Lemtrada? I get mine without going private. Lemtrada is the rolls royce of all of the meds, according to my MS nurse. Worth looking into maybe?

Blinder

Is there anywhere I can find a list of which MS treatments are covered by which irish Health Insurance companies?
Thx

vmb

What´s your insurer? I know VHI covers lemtrada and tysabri. I didn´t find anything about Laya (my company).

In my case, given the MRI progression in just two years, the fund request for lemtrada was pretty straightforward. We decided to go with Lemtrada in August, and by the end of the month I was admitted.

It was brought forward because I was suffering another relapse, but the nurses told me it usually takes one or two months from the approval to the treatment

Regarding the funds approval, I know It also depends on the hospital, because afaik the funds for these drugs are not from HSE, they are withdrawn from the hospital budget.

It is a shame that money could manage important decisions that could change our lives. For me, it is just stupid.

Tysabri cost is something like 25k euro per year. Tecfidera is about 2k per month! Those costs are similar!!!

kala85

Blinder wrote: »

Is there anywhere I can find a list of which MS treatments are covered by which irish Health Insurance companies?
Thx

Would be interested in this as well.

Does anyone know what the story is with Aviva and laya healthcare?

Blinder

vmb wrote: »

What´s your insurer? I know VHI covers lemtrada and tysabri. I didn´t find anything about Laya (my company).

thanks vmb

i'm with Laya at the moment, but my MS isn't covered as it's pre-existing and so I have to wait until the 5 years pass ( coming up to year 3 of that). Still have another couple of years to go.
However, with health insurance, any change/upgrade in policy usually means a 2 year waiting period before the 'newer' benefits are available. So I am looking at the moment, if I have the right policy for me , for when the 5 year waiting period is up.
Don't want to get to the 5 year mark, and then have to wait another 2 years if I have to change insurer.

i'm on the right treatment for me now ( I think) in the public system, so it's not urgent, but I just want to make sure that in the future the best options are open to me.

vmb

Hi Blinder. I am in a similar position, I joined Laya before my dx, but I went to the hospital with symptoms two months before. In that case, it is considered pre existent condition.

Have you notified anything about your dx to Laya? In my case they don´t know anything about my MS.

The only thing they know is that I visit my GP a lot!

Blinder

vmb wrote: »

Have you notified anything about your dx to Laya? In my case they don´t know anything about my MS.

Nope, not yet. I haven't made any claims on it, Just claimed the tax relief on any medical expenses I had ( didn't claim anything form the insurers, because all the medical expenses were all ms stuff - medication, gp visits and consultant visit from when i got fed up with waiting for the public system and went private to get some answers about what was )

Lollipops23

vmb wrote: »

Hi Blinder. I am in a similar position, I joined Laya before my dx, but I went to the hospital with symptoms two months before. In that case, it is considered pre existent condition.

Have you notified anything about your dx to Laya? In my case they don t know anything about my MS.

The only thing they know is that I visit my GP a lot!

Laya don't know anything about my condition- my last healthcae provider knew it was a pre existing condition (I'd reported a relapse from 3 years ago when I didn't know I had MS), so it predated my policy with them.
Tbh the fact that I would also need a day off every month to get Tysabri would be enough to put me off too!

Lollipops23

Getting very nervous about this MRI tomo- in the last few days or so I've had very mild tingling in my feet. Reckon it's a new symptom- combined with the fact that the old ones haven't gone away.
Anyone here been diagnosed as Secondary Progressive? I think that I may be about to be....

byhookorbycrook

Lollipops, I get tingles in all kinds of areas (ooo-err Matron) that come and go (oo-er etc) all the time and the neuro doesn't really feel it means anything much. I get a jumpy eye from time to time if I am over tired and the tingles are much worse too and especially if I have an infection brewing.

At one stage a leg took to collapsing of its own accord and I was sure it was MS related- transpired to be a sciatic nerve issue- my point being not all MS-like thingies are MS related.

Many of my oldies are with me all the time too. Relapsing remitting doesn't mean all the previous symptoms go away, the bits of damage from my 1st ever attack have moved in to stay, though some have improved slightly down the years. Better meds now should help us down thel ine though.

Good luck tomorrow and do your best to stay (relatively) calm, MS loves stress!

Lollipops23

Thanks for talking me down (mostly!). Had the MRI this morning- was in the tube for over an hour- not sure what to make of that. I could see the technicians throughout in the mirror, and they seemed to be intensely discussing whatever they were seeing, which only served to freak me out even more tbh.
I've defo being letting stress get to me of late though and I know it's not going to serve me well in the long run.

byhookorbycrook

A brain and c spine would take about that long and if you moved any mm at all , they would have to redo that bit , so I wouldn't worry about the hour. As top the intense discussion, that may have been about someone's hot date or weekend away plans!

ash23

Same as byhookorbycrook, I often get twitches (especially if I've had too much caffeine) and tingles (randomly but moreso when I'm tired).
My full brain and spinal scan (thoracic, cervical and lumbar) took nearly an hour and a half without contrast so I also wouldn't worry about how long you were in there.
I saw them having an intense chat but all it was was that they couldn't agree if there was one new lesion on my spine. One of them thought it was, the other said I might have just moved. That was one "maybe" lesion in a year, everything else is the same.

You'd drive yourself crazy wondering about the what ifs.
On that note I'm off to the GP to discuss the return of my anxiety so I'm all too aware of what the worrying can do and I don't even have a reason to worry as everything has been stable for the last few years. Ah the joys of MS.