MS in all its glory

Lollipops23 · 20-05-2019 10:16am

Loretogirl wrote: »

A friend came across CBC oil in a chemist shop recently and thought it might be of benefit to me for stiffness.

I've been very stiff waking up lately, hadn't actually realised it could be MS-related. Thankfully I don't suffer from spasms.

Carrie6OD · 22-05-2019 3:07pm

Just got email back from Simon Harris. They are not going to fund ocrelizumab. They are going to renegotiate bla bla but basically it’s not looking good. Very disappointing

byhookorbycrook · 22-05-2019 7:57pm

Carrie, it was the same with Fampyra initially, it's all about making noise. I'm not generally one to suggest talk radio etc. but needs must.

Carrie6OD · 23-05-2019 9:48am

byhookorbycrook wrote: »

Carrie, it was the same with Fampyra initially, it's all about making noise. I'm not generally one to suggest talk radio etc. but needs must.

I’m still in the MS closet with everyone but my close friends and family (although it’s becoming very obvious as time goes by) so am reluctant to be out there but I think you’re right. It’s time to make more noise.

Thank you for all you did for Fampyra it’s has certainly changed my life.

eimsRV · 23-05-2019 11:26am

Carrie6OD wrote: »

Just got email back from Simon Harris. They are not going to fund ocrelizumab. They are going to renegotiate bla bla but basically it’s not looking good. Very disappointing

I see the NCPE decision was "The NCPE recommends that ocrelizumab (Ocrevus®) not be considered for reimbursement unless cost-effectiveness can be improved relative to existing treatments." But are they comparing only to RRMS treatments, I understood that ocrelizumab is indicated for PPMS also? Website only mentions RMS

Carrie6OD · 23-05-2019 4:10pm

eimsRV wrote: »

I see the NCPE decision was "The NCPE recommends that ocrelizumab (Ocrevus®) not be considered for reimbursement unless cost-effectiveness can be improved relative to existing treatments." But are they comparing only to RRMS treatments, I understood that ocrelizumab is indicated for PPMS also? Website only mentions RMS

Exactly. Ocrelizumab is approved by the NHS for PPMS patients with certain markers. I don’t understand how RRMS even comes into it

eimsRV · 23-05-2019 4:48pm

Was a pilot scheme ever started in Ireland for Ocrelizumab?

eimsRV · 23-05-2019 4:51pm

Mulling over my choices of what DMD I move forward with. Been presented with Mavenclad, Gilenya or Tysabri. I'm leaning towards Mavenclad, 60% efficacy rate compared to Tysabri 65%, but a little worried if it doesnt agree with me there is no out once you;ve taken the tablets, its in your system for a year. Anyone any experience with Mavenclad? I joined the Facebook group and see fatigue remains a big issue for months after treatment is started.

Carrie6OD · 23-05-2019 8:03pm

eimsRV wrote: »

Was a pilot scheme ever started in Ireland for Ocrelizumab?

I don’t think so. I know people are on rituximab which is similar. There is no DMD for ppms which is why this is so important.

eimsRV · 23-05-2019 10:44pm

Carrie6OD wrote: »

I don’t think so. I know people are on rituximab which is similar. There is no DMD for ppms which is why this is so important.

Yes totally agree with you. I’d support a campaign or pester politicians with emails and letters

Carrie6OD · 24-05-2019 4:32pm

eimsRV wrote: »

Yes totally agree with you. I’d support a campaign or pester politicians with emails and letters

Feel free to pester! I’ve written to all the health spokespersons of the different parties, msireland are totally silent about it. They do NOTHING for ppms. It’s as if we do not exist. They are ignoring me totally. Would appreciate anyone’s efforts with this issue!

byhookorbycrook · 24-05-2019 8:53pm

Letters don't really do much. Social media gives a better return for your time, I think, as does your local radio station.

byhookorbycrook · 26-05-2019 9:41pm

Carrie6OD wrote: »

I’m still in the MS closet with everyone but my close friends and family (although it’s becoming very obvious as time goes by) so am reluctant to be out there but I think you’re right. It’s time to make more noise.

Thank you for all you did for Fampyra it’s has certainly changed my life.

To be fair, Triona Bromwell and Tom Curran did most of the work. The issue was badly let down by some very vocal TDS who pulled out of the meeting in favour of a more vote-grabbing headline.
I'm very about my MS- have been from day 1 but everyone makes their own call, based on their own circumstances.

Lollipops23 · 27-05-2019 9:25am

I walk/jogged a 5km on Thursday and am delighted with myself. Thought my fitness had gone beyond what I could ever get back and have been struggling with pain in my arms lately (my symptoms are mainly confined to my arms). Really chuffed!

byhookorbycrook · 28-05-2019 9:19pm

Eims, I'd go for Tysabri of the three, the more effective the medication, the better. I'm on Tysabri since Jan 2009 and have no relapses and no new lesions.

embee · 03-06-2019 11:05pm

I’m 21 month post round two of Lemtrada, however I was in hospital over the weekend getting steroids. I have relapsed November 2018, February 2019 and now May 2019. Three relapses in six months surely would mean lemtrada isn’t working? What the hell else can I have if lemtrada isn’t working?!?!

adam88 · 04-06-2019 8:30pm

embee wrote: »

I’m 21 month post round two of Lemtrada, however I was in hospital over the weekend getting steroids. I have relapsed November 2018, February 2019 and now May 2019. Three relapses in six months surely would mean lemtrada isn’t working? What the hell else can I have if lemtrada isn’t working?!?!

Sorry to hear about your relapse. Can I ask, how did you know you had a relapse. I was diagnosed last June with major symptoms and have been fine since but I’m often wondering would I know if I’m having a relapse ?

byhookorbycrook · 04-06-2019 10:33pm

You'd know, Adam, believe me. For me, it was almost total loss of power in a leg!
Have a look here:
https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

Nigel Fairservice · 04-06-2019 10:49pm

Ya, you'd definitely know. I went to bed one night and woke up the following morning with the left side of my body not working properly. You will notice if it happens.

embee · 05-06-2019 12:12am

November it was really weird one sided tunnel vision and weakness on the right side, February I went completely numb from the waist down, May it was severely impaired vision.

adam88 · 05-06-2019 12:35am

My first “flare up” was severe. Total blurred vision and pins and needles down my left hand side and kept falling. On my way to the hospital I thought it was a brain tumour “fortunately” is was MS. That was a year ago this week. I’ve zero symptoms now apart from fatigue and weak urine flow but I can deal with that.

Every few weeks I get awful anxiety thinking about when I’ll get a relapse and if that relapse will be the one that makes me sell my two story house, change the car etc etc. I know that MS isn’t what it used to be but please tell me it’s somewhat normal to have those emotions

Nigel Fairservice · 05-06-2019 1:41am

adam88 wrote: »

My first “flare up” was severe. Total blurred vision and pins and needles down my left hand side and kept falling. On my way to the hospital I thought it was a brain tumour “fortunately” is was MS. That was a year ago this week. I’ve zero symptoms now apart from fatigue and weak urine flow but I can deal with that.

Every few weeks I get awful anxiety thinking about when I’ll get a relapse and if that relapse will be the one that makes me sell my two story house, change the car etc etc. I know that MS isn’t what it used to be but please tell me it’s somewhat normal to have those emotions

I never even considered a brain tumour until the doctor told me I didn't have one! My last relapse was 5 years ago. I have some bladder and sensory issues, along with fatigue. The fatigue is fine. I could do without the bladder and sensory problems but in the scheme of what could be wrong with me I'll take it. You could drive yourself mad thinking about the possibilities. Take your meds and just live your life as normally as you can. Keep your car and 2 storey house. I'll hopefully be building my house in the next while. Someone told me I should only build a bungalow given my condition. I have no intention of doing that unless I get shot down for planning permission

byhookorbycrook · 05-06-2019 8:13pm

Adam, it's natural to worry. MS is a cow, but it's also extremely variable. Keep yourself as healthy as possible, a good balanced diet, get your Vit B and D levels checked and supplement, if needed.Don't smoke, keep your weight in good shape. Worry/stress will aggravate MS, so try to avoid worry. I wonder if some form of counselling might help?It's a big diagnosis and I think it takes a while for us to get our heads around it. I think it's almost like a bereavement , as we grieve for the rosy future we'd imagined and "what might have beens,"- we were only married a year when I was diagnosed and oh, the plans I had.

Those people who tell you " it could be worse, you could have x/y/z" that I want to slap quite a lot are actually right, to an extent that a perfectly healthy person could be. My best friend's mother died of motor neuron disease and had a really, really horrible death. My sister in law was diagnosed cancer the year before I was diagnosed. She's dead nearly 15 years now. Yes, have a moan, people here "get it, "be angry, be sad, be whatever you need to, but do try not to be too anxious.

Now is one of the "best" times to be diagnosed- there are so many effective meds and more and more research coming on stream all of the time.Our neuro said that when she first started, all she could give patients was "steroids and sympathy." When I was diagnosed, any of the meds (known as "CRABs" copaxone, avonex, betaferon, rebif) were the only ones available, now we have drugs like Tysabri etc. I wish I could have had them on diagnosis! That said, 18 years later, I still work full time, ride my horse (not going to win the Grand National now, though) and walk without help. It's not all sunshine, lollipops and rainbows, I do get a lot of pain and fatigue, but I manage.

PS, talk to your neuro nurse re pee flow- slow flow might lead to not emptying your bladder fully and the dreaded UTIs.

MyAccount · 05-06-2019 10:08pm

Just to add to the last two posts.

I had one very severe episode about 4 1/2 years ago, following which I was diagnosed, and another much milder relapse about 15 months thereafter. At that stage I started on an Interferon, and thankfully have not had any further relapses and no new new lesions since either.

I have some residual (but generally very manageable) “reminders” but these tend to be intermittent and don’t really stop me me doing what I want. Like the previous poster, I work full-time, in a very demanding environment, albeit I have slowed myself down a bit, and in terms of exercise / enjoyment I still cycle a fair bit, any where between 5 & 8 hours a week, typically.

As said above, a healthy diet, and good living all help; as does getting good quality and sufficient sleep. My symptoms are definitely more noticeable when I don’t do this.

Before my diagnosis My only knowledge of MS was the horror stories we have probably all seen in the media etc and my narrow experience of a friends brothers who was very bad, but didn’t mind / help himself. By that I mean he crawled into a bottle and I hear was taking drugs (not the “good” ones) so at the time I feared the worst. Since then I have learnt that many many, if not the majority of people manage their MS very well and the timelines are being constantly pushed out. With all that in mind I have come to the conclusion that while obviously it’s not a “good” news story there’s a lot of people who would swap, including a lifelong friend who following an accident is a paraplegic and totally = he has a fantastic outlook, but I know he is “jealous”, of my MS, if that makes sense.

Bottom line, as much as possible, don’t over analyise it. Be glad for the fact that you’re doing well and as said make your plans and get on with your life. Stay well.

adam88 · 05-06-2019 10:16pm

Guys thank ye for all those posts. Tomorrow is my year anniversary of being diagnosed and while things are good, still working etc. There’s a little bit of me that died that day when I got the news.
I’ve a good outlook in general and have a lot of good things going for me. Anyway. Just needed that vent lol.

embee · 06-06-2019 12:29am

The diagnosis of MS presents some challenging realities for people. Due to the fact that it is not a terminal diagnosis, it is an entirely different mindset and you have to accept you have MS but that it's not a terminal diagnosis, like MND. I am that person who had to have brain biopsies as my neuro was fairly sure based on the MRI I had I didn't have MS but a big brain tumour. The biopsies obviously showed it was "only" MS and I spent time telling myself "it could be worse" but the reality is that it isn't going to kill me but has made life harder and will always continue to do that. It has changed my life in very harsh ways. I have no choice but to accept it, I wish it would just leave me alone for a wee while!

LegacyUser · 03-07-2019 12:30pm

Hi everyone. I have hereditary spastic paraplegia also known as hsp. They have found spg6. Dose anyone else have hsp. It's very rare. As far as I know 5 people were I in my country have it

sarumite · 08-07-2019 10:19pm

byhookorbycrook wrote: »

You'd know, Adam, believe me. For me, it was almost total loss of power in a leg!
Have a look here:
https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

I would agree that you know.

I have had double visions. Then a complete loss of smell and taste (the loss of smell came in handy taking a nitelink home

). My most recent one was severe pins and needles down both legs. When you have a flare up, you hope it isn't the MS, but deep down you know that it is.

adam88 · 10-07-2019 9:31pm

sarumite wrote: »

I would agree that you know.

I have had double visions. Then a complete loss of smell and taste (the loss of smell came in handy taking a nitelink home ). My most recent one was severe pins and needles down both legs. When you have a flare up, you hope it isn't the MS, but deep down you know that it is.

I’ve an awful dull ache in my right foot every night. So much so that I’ve started to take pain killers for it to go to sleep. I’m slow to get to the dr. Even if it was ms I’d be very very slow in starting five days of steroids. Prob the worse 2 weeks of my life after the steroids

byhookorbycrook · 18-07-2019 12:34am

adam88 wrote: »

I’ve an awful dull ache in my right foot every night. So much so that I’ve started to take pain killers for it to go to sleep. I’m slow to get to the dr. Even if it was ms I’d be very very slow in starting five days of steroids. Prob the worse 2 weeks of my life after the steroids

Is It muscular or neurological do you think ?

MS in all its glory

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