MS in all its glory

MyAccount · 05-01-2020 07:33PM

I'm not a medical professional but over the last years have become an expert on my MS. That said my MS is my MS. We are all different so what works for me will likely not work for others.

We all have different challenges so I would suggest only you can decide what works and what doesn't. In my case fatigue is one of my major issues.

What's your sport?

tinofapples · 05-01-2020 09:32PM

On the subject of fatigue, have any of you experience of Amantadine? I've been on it almost a year now and don't see any benefits whatsoever from it so I'm considering binning it as I'm of the opinion why take some medication that has no positive impact on me.

adam88 · 06-01-2020 09:14PM

Deco99 wrote: »

Thanks for the replies on my health insurance question. This seems to be a good forum for just chat. Being a very sporty person, curious as to what changes to fitness regime would be needed to take into account MS. The medical profession always err on side of caution to cover their ass. For example, not MS related, you could have a back injury and doctor might say 3/4 months but a sports orientated physician would give the green light after a month. The line between wrapping yourself in cotton wool and pushing too hard you do harm. Just curious as to people's experiences here for dos and don'ts regarding fitness

I do strenuous work and asked my consultant what should I do. She said live as if I don’t have ms and do everything you were doing beforehand but just listen to your body. I thought that was good advice

adam88 · 06-01-2020 09:15PM

On another note I’m struck down with the flu (real flu, not man flu) my body is gone into limp home mode. Any advice on how to ride out this storm

Deco99 · 09-01-2020 09:34PM

MyAccount wrote: »

I'm not a medical professional but over the last years have become an expert on my MS. That said my MS is my MS. We are all different so what works for me will likely not work for others.

We all have different challenges so I would suggest only you can decide what works and what doesn't. In my case fatigue is one of my major issues.

What's your sport?

Football

MyAccount · 17-01-2020 09:37AM

OK can't comment as I haven't played football for 35+ years (I never had anything approaching skill) - my beloved sports were endurance sports, mainly running and cycling - typical events / races for me ranged between 2 to 4 hours (and occasionally longer) - I have found that the longer events don't work for me as my energy levels / fatigue becomes an issue (both on the day and in the days after), hence I have adjusted the length of time I exercise for, and rarely enter races etc, but have increased the frequency and that seems to work reasonably well, at least, most of the time

I cannot comment on football, which I imagine is more a case of repeated short bursts over a c.90 minute period (with intermittent bouts of lower lever activity / periods where one can recover?), but open to correction here.

We are all different but for me having some issues with one leg and drop foot, I have had to more or less give up running, haven tripped a couple of times (and suffered minor injuries).

Personally though, I would say give it a go - your body will tell you what is possible - on a positive not were one unlucky enough to fall, presumably it would on be grass which is less hard than falling on tarmac / concrete as happened me (as all my running was "on road") - Give it a go and celebrate what you you can do rather worrying about what you cant.

my 2 cents anyway

eimsRV · 18-01-2020 11:21PM

Has anyone gone through the process of getting life insurance recently? I’d love to move house, and seems like the biggest hurdle is getting life insurance cover in place. Any tips?

Cream2000 · 20-01-2020 06:31PM

Hi Everyone. Question I am hoping someone can help me with: Has anyone been able to get their Neuro to give a prescription for medicinal cannabis for MS? I saw my neuro recently and we talked about Simon Harris passing it for MS but my neuro said he knows its is available but the neuros were not given a protocol for giving it to people with MS. He said he would not know what or how much to prescribe so he couldnt give it to me. I am trying to find someone who gets it now for MS so I can give my neuro the details. Thanks for any help you can give!

bread · 24-01-2020 11:49PM

eimsRV wrote: »

Has anyone gone through the process of getting life insurance recently? I’d love to move house, and seems like the biggest hurdle is getting life insurance cover in place. Any tips?

Hi, yes, i got it last year. It's double the price of a non MS person. Think they got a medical report from my neurologist.

cj maxx · 30-01-2020 12:09AM

Carrie6OD wrote: »

My neurologist wrote a book recently (I’m sure you’ll guess who he is!) and he said in the book that his outpatients clinic is what he dreads the most in his working week!

PM me his Name. I might want to look up the book

Crunchy Friends · 02-02-2020 08:53PM

eimsRV wrote: »

Has anyone gone through the process of getting life insurance recently? I’d love to move house, and seems like the biggest hurdle is getting life insurance cover in place. Any tips?

I have. I found Lion.ie extremely helpful! I couldn't get it when buying my house as my MS was still undiagnosed. Since being diagnosed in March however I've managed to get it. It is about 3-4 times the price my other half pays for his.

Deco99 · 05-02-2020 12:18AM

eimsRV wrote: »

Has anyone gone through the process of getting life insurance recently? I’d love to move house, and seems like the biggest hurdle is getting life insurance cover in place. Any tips?

As said already, initially double the price and can drop to around 50% when they get medical report

Carrie6OD · 05-02-2020 07:38AM

Deco99 wrote: »

As said already, initially double the price and can drop to around 50% when they get medical report

Is car insurance the same?

adam88 · 05-02-2020 10:26AM

Carrie6OD wrote: »

Is car insurance the same?

Don’t think they can put a loading on you because you have MS for car insurance.

tinofapples · 05-02-2020 11:59AM

adam88 wrote: »

Don’t think they can put a loading on you because you have MS for car insurance.

As we know, they love any excuse to load up your premium. I disclosed my diagnosis to my insurer last year and they asked was it noted on my licence, it wasn't at the time but I just renewed my licence this January so will find out later in the year if they do indeed "load" for MS patients.

Lollipops23 · 06-02-2020 10:26AM

adam88 wrote: »

Don’t think they can put a loading on you because you have MS for car insurance.

I had to get a doctor's letter the first year I was renewing with MS. Then I just had to add it to my licence when I renewed it.

My premium is much the same as it always was!

byhookorbycrook · 06-02-2020 02:21PM

My husband was adding me to his policy . He was quoted x amount .When he told them about my diagnosis, the price shot up . This despite me having a “ fit to drive “ letter from my Neuro .
This sad case may impact further on insurance for people with MS. https://www.irishtimes.com/news/crime-and-law/courts/circuit-court/driver-with-ms-who-killed-pedestrian-and-injured-three-others-jailed-1.4119505?mode=amp

Lollipops23 · 06-02-2020 05:32PM

byhookorbycrook wrote: »

This sad case may impact further on insurance for people with MS. https://www.irishtimes.com/news/crime-and-law/courts/circuit-court/driver-with-ms-who-killed-pedestrian-and-injured-three-others-jailed-1.4119505?mode=amp

I'm annoyed at this woman- it is a fact of our sh**ty conditions that we HAVE to be responsible and know when to say when regarding driving. I couldn't live with myself if I thought my pride and pigheadedness cost somebody their life. She knew damn well she was no longer fit to drive.

Fourwinds · 06-02-2020 08:33PM

I have to say when I was diagnosed and I had to inform my insurance companies they were all happy with the doctors letters except for my daughters car they wanted letter apron letter to say I was fit to drive and at the same time my motorbike insurance wanted nothing all they said to my wife is he will know himself when to stop. It’s something the rest should do we all know what a pain in the ass this disease is and each and every one of us know our limits and we strive each and every day to keep up to it.

byhookorbycrook · 07-02-2020 12:44AM

I have always submitted a letter from my Neuro to insurance companies , even when they don’t look for it .

Crunchy Friends · 09-02-2020 06:12PM

Carrie6OD wrote: »

Is car insurance the same?

Once my MS was diagnosed and I had my drivers licence renewed (I was only given a 3 year licence renewal) I contacted both my car insurer and health insurer to notify them of a diagnosis.

For the car insurance I didn't even specify MS, I just told them I had been diagnosed with an LTI and gave them a copy of my new licence.

For the health insurers, they said they didn't need to be notified at all.

No increase in premium in either case.

I'd be interested to see if switching to a new car insurer in the future would they load my premium.

LegacyUser · 11-02-2020 12:47PM

Hi all,

I've been on fingolimod since 2015 and was fine for the first few years, but for the last 2 I've almost constantly been sick (to the extent a co-worker started referring to me as typhoid Mary and people have started to annoyed with me coming in to work sick so often). I am pretty fed up of being constantly sick by now. This is my third time being stuck in bed sick since December. My MS was always mild - so much so that the first Neuro I saw didn't think I needed to be on medication. Eventually I started copaxone and once there was new MRI activity switched to fingolimod. Admittedly - for all that I know it's the fingolimod that's kept it mild all these years. I'd still like to stop taking it at this point, being sick all the time is really bringing me down. But I've seen things (fda warning) saying that when you stop taking fingolimod as your immune system recovers your MS can become worse than it ever was, that you can end up severely disabled, and that the only way to stop taking it is to switch to an even more aggressive drug. Has anyone had any experience or been told anything by their doctor about coming off fingolimod?

Sorry for being a Debbie Downer....

LegacyUser · 11-02-2020 01:54PM

I wanted to clarify my earlier post - my colleagues don't know I have ms so certainly being more open with people would possibly help make things less stressful, but my main issue is being sick so often.

Salmotrutta · 02-03-2020 03:48PM

Salmotrutta wrote: »

Best of luck with it. I've been stable at 0.8 for a few years and still get plenty of colds and throat infections so I can't imagine how hard it is at 0.4.

After all that, I've now had a sore throat/cough for most of the past 2 months that I just can't shake. Had bloods done and lymphocytes are only down to 0.7. GP just said it's a viral thing, nothing else wrong, but by God is it annoying to feel sick for so long. The corona virus thing is also worrying, if you can't shake a simple cough how is the less effective immune system going to cope if you get that?!

Lollipops23 · 02-03-2020 03:51PM

Last bloods showed lymphocytes are back up a bit, so here's hoping I won't be getting sick so often!

In terms of stress management, I got engaged last week so the next year or so will be a test!!! Already getting het up over silly sh*t

Salmotrutta · 02-03-2020 04:21PM

Lollipops23 wrote: »

Last bloods showed lymphocytes are back up a bit, so here's hoping I won't be getting sick so often!

In terms of stress management, I got engaged last week so the next year or so will be a test!!! Already getting het up over silly sh*t

Oh wow, congrats! Remember it is just silly sh*t when the organising gets too stressful! Best of luck with everything! Good news on the lymphocytes too.

:)

Nigel Fairservice · 02-03-2020 04:23PM

Salmotrutta wrote: »

After all that, I've now had a sore throat/cough for most of the past 2 months that I just can't shake. Had bloods done and lymphocytes are only down to 0.7. GP just said it's a viral thing, nothing else wrong, but by God is it annoying to feel sick for so long. The corona virus thing is also worrying, if you can't shake a simple cough how is the less effective immune system going to cope if you get that?!

I'm probably completely overreacting but I came off my medication for a while. I passed through 3 airports at the weekend and 2 planes and will be doing the same tomorrow so I wanted my immune system up and running.

Blinder · 02-03-2020 05:12PM

Lollipops23 wrote: »

Lymphocyte count came back before xmas, I'm at a .4 when I had been .7 consistently. Explains my run of bad health! They won't do anything unless they drop to .2, so I'm just having to grin and bear it for now.

I'm Gilenya too. Been 0.3 for last year or more. Was told the same, about it not been a problem unless it drops to 0.2
So i just avoid sick people if I can and keep hand sanitizer on my desk, in car at home (even before the latest conoravirus stuff)

byhookorbycrook · 03-03-2020 10:39PM

I'm a primary teacher so am exposed to all kinds of bugs. Because I work in very close contact with small groups, I'm quite in "the firing line," Corona isn't bothering me, even though Tysabri is classed as an immuno-suppressant. The thought of the massive rebound relapse that would happen if I came off tysabri scares me a lot more than Corona, so I'm staying on.

Carrie6OD · 03-03-2020 11:01PM

byhookorbycrook wrote: »

I'm a primary teacher so am exposed to all kinds of bugs. Because I work in very close contact with small groups, I'm quite in "the firing line," Corona isn't bothering me, even though Tysabri is classed as an immuno-suppressant. The thought of the massive rebound relapse that would happen if I came off tysabri scares me a lot more than Corona, so I'm staying on.

I’m a secondary teacher and 100 of my students and 10 colleagues just came back from Northern Italy. Got my 2nd ocrelizumab infusion on Friday and I’m absolutely bricking it about coronavirus. I don’t feel like I can justify taking time off work. It’s an awful situation

MS in all its glory

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