MS in all its glory

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 ?

adam88 · 18-07-2019 7:06pm

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 · 18-07-2019 7:34pm

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 · 19-07-2019 9:36am

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 · 19-07-2019 4:08pm

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 · 20-07-2019 3:43am

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 · 20-07-2019 10:24am

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 · 21-07-2019 10:03am

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 · 21-07-2019 2:55pm

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

Nigel Fairservice · 22-07-2019 12:47pm

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 · 22-07-2019 7:38pm

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 · 22-07-2019 9:27pm

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 · 22-07-2019 9:45pm

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.

Nigel Fairservice · 23-07-2019 12:54am

adam88 wrote: »

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.

I have no difficulty walking but my walking pace is quite slow as well, especially in summertime in this weather. In winter my walking pace definitely picks up. I had some water works issues as well to do with frequency and, how would you say it, beginning the process.

I struggled with heat for a few years before my diagnosis but it makes sense now. I was always nearly passing out in buildings with the heat, hated hot summers and couldn't tolerate any kind of hot water when showering. My legs and torso would get itchy and no amount of scratching would would relieve it...nervous system playing tricks on me! I try to shower now with water as cold as I can tolerate but I still get the itch frequently enough.

discobeaker wrote: »

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.

Haven't tried it but would be interested in trying some of the cooling wristbands when out and about or a day.

Lollipops23 · 23-07-2019 9:30am

adam88 wrote: »

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.

Mine was certainly there long before diagnosis; but defo ramped up a notch since 2015.

Regarding waterworks; make sure you're drinking tonnes of water. It's easy to get a UTI/kidney infection when you're retaining or dehydrated. Obviously this means you also need to keep in close proximity to a loo as well!

adam88 · 23-07-2019 9:03pm

Had my waterworks checked today in the hospital. Flow test etc. She said it looks pretty normal and I’m properly voiding my bladder so that’s good news.

This heat has me proper fecked, was meant to go to a meeting tonight. There wasn’t a hope I was going, was nearly falling asleep driving the car. Needed a nap big time. Can’t wait for the cooler weather

cj maxx · 27-07-2019 10:59pm

adam88 wrote: »

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.

I can trace symptoms back to when I was 3 or 4. Mri's showed very very old lesions
.I reckon I've had it since then. I was hospitalised at that age. Raging fever and weakness in one side. Sounds like every hospital stay I had since. Sleep it off and rest and I'm right as rain

Nigel Fairservice · 29-07-2019 1:39pm

I'm off work today and I'm sitting in the cinema with a cold bottle of water down my shirt :pac: I was beat after the walk in the muggy heat.

adam88 · 29-07-2019 4:10pm

Nigel Fairservice wrote: »

I'm off work today and I'm sitting in the cinema with a cold bottle of water down my shirt :pac: I was beat after the walk in the muggy heat.

Ya come this time in the evening 4ish. I’m good for nothing and need a lie down. Don’t think it’s gonna get any better

byhookorbycrook · 29-07-2019 8:40pm

discobeaker wrote: »

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.

I used to have a proper Chillow- the ones by Soothsoft, which was great when I was injecting betaferon (gives you flu like symptoms) They have since gone out of business so I have the JML one, which isn't as good, but still helpful.

byhookorbycrook · 29-07-2019 8:46pm

adam88 wrote: »

Had my waterworks checked today in the hospital. Flow test etc. She said it looks pretty normal and I’m properly voiding my bladder so that’s good news.

This heat has me proper fecked, was meant to go to a meeting tonight. There wasn’t a hope I was going, was nearly falling asleep driving the car. Needed a nap big time. Can’t wait for the cooler weather

Did they say anything about your pain? I find that I need to make an effort to really squeeze out the last few drops of pee,otherwise, I'm looking to go again within a few minutes. So, when you think you are done, push a bit more, is what I was told.

cj maxx · 29-07-2019 11:36pm

byhookorbycrook wrote: »

Did they say anything about your pain? I find that I need to make an effort to really squeeze out the last few drops of pee,otherwise, I'm looking to go again within a few minutes. So, when you think you are done, push a bit more, is what I was told.

One thing I learned was when possible sit down to pee . Massive difference

adam88 · 30-07-2019 12:04am

byhookorbycrook wrote: »

Did they say anything about your pain? I find that I need to make an effort to really squeeze out the last few drops of pee,otherwise, I'm looking to go again within a few minutes. So, when you think you are done, push a bit more, is what I was told.

Ya so my flow rate chart was like half a lemon shape and just at the end there was a spike which was the final drop which I had to use my abdominal muscles to squeeze out. She wasn’t overly concerned about it. She said she’d be more concerned if the chart looked flat. If that makes sense

Lollipops23 · 30-07-2019 10:43am

byhookorbycrook wrote: »

Did they say anything about your pain? I find that I need to make an effort to really squeeze out the last few drops of pee,otherwise, I'm looking to go again within a few minutes. So, when you think you are done, push a bit more, is what I was told.

I'm the very same; I've been known to get loooooads more out even after I thought I was done. It's like there's a separate chamber in my bladder or something!

Carrie6OD · 30-07-2019 1:12pm

Lollipops23 wrote: »

I'm the very same; I've been known to get loooooads more out even after I thought I was done. It's like there's a separate chamber in my bladder or something!

I’m the same. After I’ve finished I stand up for 10 seconds and then sit back down to empty the other bladder chamber!

Loveinapril · 30-07-2019 6:16pm

I notice if I tilt forward it opens the secret pee chamber and I go again!

MyAccount · 30-07-2019 6:24pm

And I thought I was the only one with defective "plumbing"!

Nearly comforting to know I am not alone.

Nigel Fairservice · 30-07-2019 7:22pm

One morning at work I went 7 times in 4 hours. Full bladders as well, no idea where it was coming from. That wasn't unusual before I was put on Betmiga by my neurologist.

Loretogirl · 17-08-2019 2:03pm

Question,

I have been taking Gilenya seven years with no major problems, the Consultants seem to be happy with my progress as I have had no new lesions. Ever so often I get a flare up of symptoms, fatigue, balance etc. Can this happen if you are on a DMT or is it just me.

Thanks

Loveinapril · 17-08-2019 8:14pm

Is anyone using CBD oil? I want to try it and would love a brand recommendation.

Nigel Fairservice · 17-08-2019 8:30pm

Loretogirl wrote: »

Question,

I have been taking Gilenya seven years with no major problems, the Consultants seem to be happy with my progress as I have had no new lesions. Ever so often I get a flare up of symptoms, fatigue, balance etc. Can this happen if you are on a DMT or is it just me.

Thanks

I think it happens to a lot of us. I'm not on Gilenya but I have ongoing problems with fatigue and concentration at times. I also get some sensory things with my right arm.

Carrie6OD · 17-08-2019 9:34pm

Loveinapril wrote: »

Is anyone using CBD oil? I want to try it and would love a brand recommendation.

Me too... would love to know more about this.

Nigel Fairservice · 17-08-2019 10:12pm

Loveinapril wrote: »

Is anyone using CBD oil? I want to try it and would love a brand recommendation.

What does it do?

adam88 · 18-08-2019 3:19am

Nigel Fairservice wrote: »

What does it do?

Meant to be the business. Doctors will informally tell you it’s great but won’t officially tell you it’s good.

As long as I won’t fail a roadside drugs test I’m all for it.

byhookorbycrook · 18-08-2019 6:54pm

CBD is most likely the same as Baclofen.

Loretogirl · 24-08-2019 4:05pm

England’s MS Site: mssociety.org.uk has an article on CBD oil, interesting read.

Nigel Fairservice · 02-09-2019 12:13am

Does anyone get pain in the soles of their feet? I'm wondering if it's my MS or something else.

Salmotrutta · 02-09-2019 12:10pm

Similar query. Anyone get a persistent muscle twitch? My lower right eyelid has been twitching constantly for a couple of months now, it's a tiny twitch that you wouldn't see, but I can feel it the whole time. Same eye I had optic neuritis in. The eyelid often feels heavy, even though it works fine, presume the muscle is a bit tired from contracting the whole time. Not something major but I'll certainly mention it to my neuro when I see him next.

byhookorbycrook · 02-09-2019 7:44pm

Nigel and Salmon, yes to both and yes to being most likely MS related. Gabapentin and amitriptyline help with the soles of the feet for me.
Eye twitch may be Muscle Facilitation, Baclofen might help, but talk to the neuro.

Nigel Fairservice · 02-09-2019 8:34pm

Salmotrutta wrote: »

Similar query. Anyone get a persistent muscle twitch? My lower right eyelid has been twitching constantly for a couple of months now, it's a tiny twitch that you wouldn't see, but I can feel it the whole time. Same eye I had optic neuritis in. The eyelid often feels heavy, even though it works fine, presume the muscle is a bit tired from contracting the whole time. Not something major but I'll certainly mention it to my neuro when I see him next.

I get a twitch in my eye as well. Not bad enough for anyone but me to notice though. I only get it the odd time.

byhookorbycrook wrote: »

Nigel and Salmon, yes to both and yes to being most likely MS related. Gabapentin and amitriptyline help with the soles of the feet for me.
Eye twitch may be Muscle Facilitation, Baclofen might help, but talk to the neuro.

Thanks, I'll say it to my neurologist next time I see her. The soles of my feet are at their worst in the morning when I get out of bed.

byhookorbycrook · 03-09-2019 8:31pm

Well, who has been told to go to Knock and get cured?All over the media yesterday that a woman with MS was miraculously cured in Knock. Closer examination of the case shows that she was never diagnosed with MS in the first place!

https://www.independent.ie/irish-news/i-didnt-go-to-knock-that-day-for-a-cure-ms-sufferer-recalls-day-a-miracle-changed-her-life-38461632.html

"A consultant neurologist who reviewed the file wrote to Dr Murray that "it would be fair to say she has been cured of neurological symptoms but not of MS. It seems to me that Mrs Carroll had medically unexplained symptoms which have now (thankfully) resolved." "

https://www.rte.ie/news/ireland/2019/0901/1073162-church-knock/

MS in all its glory

Comments