Last reply 3 years ago
Funny, but sometimes not……..

Call this silly but it’s so true…. Let’s say you are going down a rollercoaster,,,,, well you know that feeling in your tummy? Exchange that feeling to the calves of your legs. I know this is definitely the MS but it’s so uncontrollable, it can go on for hours, I hold onto my leg hoping it stops but it just takes it own time to pass. Wonder if there’s a medical term/name for it? Anyone know? Lisa 🙂

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stumbler
3 years ago

cherish
3 years ago

Thanks for that link Mr Stumbler.
Yeah, that certainly makes sense.
It’s never painful it’s just uncontrollable and tbh after about half an hour it gets very exhausting. It’s like when you find something funny and you laugh so much and you can’t stop, then you are exhausted.
I must bring it up with my nurse next week as it’s getting really frequent now and I wonder if she would have an answer on how to control it or calm it down.
🙂 🙂 🙂


laurenrichards
3 years ago

I get a similar feeling in my right arm and leg sometimes. I had spasms three years ago which has left me with a ‘feeling’ in my right limbs which I have all the time. Sometimes I get this roller coaster feeling in my arm and leg…strange..and i don’t know what its called sorry. Only just been diagnosed so learning to live with it! Don’t think this will help but thought I’d share 🙂


cherish
3 years ago

Aww bless you laurenrichards.
It’s certainly a very ‘interesting’ disease. It catapults all these wrong sensations at you and we don’t know what to do with them.
The ‘rollercoaster calves’ arnt painful, they are just wrong and quite tiring as I hold onto my leg as you would on to your tummy in that situation. It’s when it goes beyond 15/20 minutes that I find it tiring. Glad you understand what I mean though. It’s always my calves but I did once have it down my forearm. But I truly feel like my intestines and calves swap places and goes to a pleasure park on a white water ride that never stops.
Havnt had it today though.
Maybe I shouldn’t have said that!!, haha.


laurenrichards
3 years ago

Yeah I do understand, I haven’t been able to describe that strange feeling until I saw your post! It’s not painful for me either, just uncomfortable! Have many sensations that I don’t know how to explain…do you get those? I just end up calling them the ‘feeling’!! Don’t speak too soon!! Haha.


cherish
3 years ago

Oh yeah, from just above knees to tips of toes there’s constant disruption, burning, freezing, stinging, nipping, tightness, etc. I have this 24/7. My balance is always compromised by the feeling of ‘marbles’ inside my socks too.
What a pest huh. I’ve had this for almost 3yrs now.
Are you gonna be going on to disease modifying drugs laurenrichards? Poor you, your head probably all over the place still trying to accept the MS. 🙂 🙂


laurenrichards
3 years ago

Yeah I have a constant ‘feeling’ in my right arm and leg due to the spasms I was having. It started when I was 16 but was called a clinically isolated syndrome but a few weeks ago was diagnosed (I’m 19 now). Oh dear :/ yes I am planning on starting DMDs in a few weeks, just waiting for an app! I don’t quite fit into the criteria though, I’ve had two relapses in 2 and a half years but think I am starting some soon! Are you on any? Just learning to live with it now, have the good and bad days but still trying to do everything I can!! It’s the tiredness that gets me 🙁


cherish
3 years ago

Heya.
I’ve had a bit of a faff with dmds.
I started on extavia last April but at that time I also had gallbladder disease and my liver was beginning to fail.
General surgeon blamed the extavia for the liver probs and Neuro blamed it on gallbladder disease.
Anyway, they stopped the interferon and I got my gallbladder removed 3mnths ago.
That’s me now just back on the extavia (2wks ago), so when I get post bloods in July there will be an answer there surely. If my liver is fine then it would have been the gallbladder and if it’s not then it will be the dmds and I’d have to stop it again 🙁 Not sure what alternatives there would be on offer.
Have you got a good gp you can talk to about your tiredness? There is most definitely a med for that. Shame, it’s so difficult huh and you are so young too. Although I was 23 when I had 1st onset but I chose to ignore it and continued generally fit and well until I seemed to touch 40yrs old.
Fingers x’d for you. Dmd I guess is a good option for you atm as you are in early stages (so to speak), so if it stops one third of your relapses then hopefully you could stay relapse free for some time 🙂 🙂 Lisa.


stumbler
3 years ago

@laurenrichards , yes, there may be one or two meds which may help with fatigue. I used the word “may” deliberately as not all meds work for all people.

But, Amantadine or Modafinil have been used to address fatigue. From my perspective, fatigue is either mental or physical and these meds may address the mental aspect.

But, life generally is very demanding of us, so we have to try and strike a balance.


laurenrichards
3 years ago

@cherish sorry about the late reply! Sounds like you’ve been through a hard time with the meds! I’m still waiting for an app with the neurologist (there is such a long waiting time!) want to get things settled before I go to uni!!
@stumbler thank you for the advice! Will see how I go with the tiredness but if I’m struggling will go and see my gp!


cherish
3 years ago

Heya laurenrichards.
It’s a shame you are having a wait for neurologist bcoz I guess you are eager to talk to them like yesterday!!
What are you gonna be doing at uni? Very exciting time for you too.
🙂 🙂 🙂


laurenrichards
3 years ago

Yeah would like to get things sorted really @cherish! Going to be doing sports rehabilitation….little bit worried about how the MS is going to cope but I’m going to give it my best shot 🙂 ready for a change now!


Anonymous
3 years ago

hi @cherish, rollercoaster,,, good description! i am getting it in back of head and spine…wanna swap? lol Its like having a outta body experience every 5 mins


cherish
3 years ago

Heya Ironribs
Yeah, il take a swap from you as it’s been going down my right leg for 4 days now 🙁
Feckin pest. Get sick of grabbing it to stop. But hey, it must be proper crap going down your spine. Il take it for 24hrs just as a ‘change of scenery’ so to speak.
🙂 🙂


cherish
3 years ago

Heya laurenrichards.
As long as you feel up to it then don’t let the ms stop you as it may keep you in ‘limbo’ for many years.
You are young, bright and relitevley healthy so ‘crack on’.
You will do well.
Love Lisa 🙂


Anonymous
3 years ago

@cherish thanks your a star…i have sent it recorded delivery to make sure it gets there,it will need signing for lol


cherish
3 years ago

@ironribs. Just sent my leg special delivery!! Look after it plz!!
I can do neck and spine, just getting my couch organised. Looking forward to different experience!!
Gotta laugh!! xx


Anonymous
3 years ago

@cherish don’t worry i will look after it as if it were my own,i got plenty of baclofen!!…now i better go have a shave then…lol


cherish
3 years ago

@Ironman
Yeah you best, lol, bcoz I ain’t shaving my legs for a laugh!!
Remember to put a note on your spine to say ‘don’t leave me in shed if customer not in’.
Yup, I can feed baclofen into your parts too, haha.
Il maybe treat it to some bedtime diazepam if it behaves!
🙂 🙂 🙂 xx

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