MS in all its glory

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 09:30AM

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 09:03PM

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 01:39PM

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 04:10PM

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 08:40PM

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 08:46PM

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 01:12PM

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!

MyAccount · 30-07-2019 06:24PM

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

Nearly comforting to know I am not alone.

Nigel Fairservice · 30-07-2019 07:22PM

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 02:03PM

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

Nigel Fairservice · 17-08-2019 08:30PM

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 09:34PM

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 03:19AM

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 06:54PM

CBD is most likely the same as Baclofen.

Loretogirl · 24-08-2019 04:05PM

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 07:44PM

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 08:34PM

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 08:31PM

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/

embee · 04-09-2019 12:50AM

Off to the neurology day unit tomorrow as my leg has gone completely numb from the knee down, the numbness is so pronounced that my AFO inficted a nasty cut to my leg which I never felt. On further investigation I have virtually no sensation at all from the knee down. My balance has been off too.. Anyone get marked worsening of numbness like that?

byhookorbycrook · 04-09-2019 11:49PM

Any chance you have an infection?Hope you are ok?

cj maxx · 12-09-2019 08:48AM

Oh, thank God that humid warm weather is gone !
No need for cooling wristbands and cold showers.
Cold weather, woo hoo !

Lollipops23 · 12-09-2019 10:15AM

byhookorbycrook wrote: »

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/

This kind of stuff makes me disproportionally angry. I know it shouldn't, but it just feeds into the list of BS 'cures'.

MS in all its glory

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