MS in all its glory

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.

MS in all its glory

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