MS in all its glory

byhookorbycrook

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 ?

adam88

byhookorbycrook wrote: »

Is It muscular or neurological do you think ?

I’m hoping it’s muscular but deep down I think it’s neuro...... it’s only at rest and when the ankle is elevated.

byhookorbycrook

Is it like a burning pain ? On the soles of your feet or in the calves etc?
I’d go to the gp and get it checked out , anyhow, s/he can’t force you to have steroids but it doesn’t sound like a relapse, in any case .
What pain meds are you using for it ? I suffer muscular pain, due to MS making the muscles have to work harder , which is easier to manage that the Neuro pain down to nerve damage . The Neuro pain won’t respond to the likes of paracetamol or voltarol gel - you would need

Lollipops23

This heat is really playing havoc with my fatigue. No matter how much sleep I'm getting, I'm in pieces the next day.

Bring on Winter!!!!

tinofapples

Paullyons1 wrote: »

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

Yes, I have HSP (SPG4) along with MS

Nigel Fairservice

Lollipops23 wrote: »

This heat is really playing havoc with my fatigue. No matter how much sleep I'm getting, I'm in pieces the next day.

Bring on Winter!!!!

Yes to this!!!

Carrie6OD

Nigel Fairservice wrote: »

Yes to this!!!

I am an anomaly... can barely move in the cold weather, loving this warmth and the freedom it gives my spasticity!

Nigel Fairservice

Carrie6OD wrote: »

I am an anomaly... can barely move in the cold weather, loving this warmth and the freedom it gives my spasticity!

People I work with go a bit mad during good weather, I just can't share their enthusiasm because of the heat. I do enjoy the brightness though and try to get some natural Vitamin D by sitting on our back step in the evening. The overcast muggy weather this past week has been so energy sapping. I love the winter. I feel the colder it is the more energy I have.

adam88

I’m the same. I find myself picking European winter city breaks rather than a week in Santa ponsa lately

Nigel Fairservice

Ya, I try to make most of my trips between November and March. I was in Barcelona last November and I was going around in my summer clothes while all the locals were wearing hats and scarves :pac: I went to Warsaw as well earlier this year in January or February and it was freezing. I wore short sleeve shirts and my jacket when out and about and I still found it warm but I still had plenty of go in me. I'd take off my jacket for a few minutes and I'd be fine. If that was the Mediterranean in summer I wouldn't be fit for anything. My temperature regulation is all over the place.

Carrie6OD

Nigel Fairservice wrote: »

Ya, I try to make most of my trips between November and March. I was in Barcelona last November and I was going around in my summer clothes while all the locals were wearing hats and scarves :pac: I went to Warsaw as well earlier this year in January or February and it was freezing. I wore short sleeve shirts and my jacket when out and about and I still found it warm but I still had plenty of go in me. I'd take off my jacket for a few minutes and I'd be fine. If that was the Mediterranean in summer I wouldn't be fit for anything. My temperature regulation is all over the place.

In EVERY way my MS is the odd one out!

adam88

First full summer with MS and boy am I suffering. Can’t sleep, when I do sleep I wake up worse than before I went to sleep. Walking pace has slowed down, waterworks are really starting to annoy me and strange little pains in my legs.
Interestingly I never liked the summer and the heat, it’s used never agree with me the past few years. I reckon MS had been there all along.

discobeaker

Has anyone tried the chillow pillow by jml. I picked one up the other day in Tesco and have been using it the last few night and I'm finding it a great help at night with the heat.