intoducing myself

[Olly]

Hi all, i'm Olly and i'm from Birmingham. i was diagnosed the first time in April last year and i've been meaning to do this for a while . wow. where to begin. ill try & summerise it. August 2019 i noticed my left thigh started twitching. 2 weeks later i was twitching from my neck to my ankles. I went to my GP & was told i had benign fasiculation syndrome. she sent me for tests where someone asked me if i got cramp often. When i said i did i was told i had Cramp Fasiculation Syndrome at which point i thought,hang on a minute. more tests ensued and in April 2020 was given the awful news. The nuerologist then sent me to the QE hospital which has a much better MND facility, for a second opinion & i went through the same tests there as well as an MRI scan and lung function tests. these were performed in July & August in which time i'd convinced myself the first Doc was wrong only to be crushed again with the second opinion which was of course the same result. At the moment im not doing too bad, i've watched a few documentarys and judging it by how far i can walk which is about 3-4 k i'm full of hope . I struggle mainly with my hands/forearms where i have significant loss in strength especially my pinch and raising my arms above my shoulder while holding something. My speech ,eating & swallowing are fine presently & i had my second lung funct5ion test on 22nd December which im awaiting the results of. Due to me having a great urge to stretch my legs out quite often during the night I'm taking 1 Amytriptiline 10mg at night and ive been given some Riluzole which ive yet to try simply because i'm not sure about it yet .The possible side affects and other peoples accounts ive read have put me off a bit. I have noticed what i think is muscle wasting round my shoulders and arms which does tally with the weakness but i try & exercise & stretch every day which does help.Well thats about it ,one last thing , im 47 this year in May. I'm still a bit scared but who wouldn't be eh, im hoping that i can learn somethings from you guys & gals as i suppose i'm still at the start ish of my journey but over time i may be able to return the favour & help someone myself one day. thanks for reading & happy newyear.

[Ellie]

Welcome Olly, glad you are doing so well and have relatively slow progression (although I know you'd rather not have an MND at all, obvs!!)

Of course you're scared, that is entirely normal.

Re Riluzole - if you tolerate it, why wouldn't you take it?

Love Ellie.

[matthew55]

Welcome along Olly, it's a ride we would rather not be on, but we are on it together. Stay Strong Matthew 👍😊x

[Shaun]

Hi Olly and welcome,
mine started with hands and cramps,
keep exercising as much as you can, put in some simple stretches as well , need to keep the muscles working , for your hand, get a soft ball and squeeze,, pegs and bulldog clips help keep your pinch grip going , your hand will adapt as other muscles compensate. Don’t overdo it keep it sensible, From personal experience if you push it will hurt and takes longer to recover and risks damaging any progress.
Gentle exercise only, this illness is a marathon not a sprint
Try the riluzole, I’ve had no side effects, the earlier you take it the better it is especially if you are on a slow progression
s.

[Lynne K]

Hi Olly, welcome to our ‘family.’ I’ve come to think family because we take each other as they are and you can say and ask whatever you want to. As Ellie stated you are bound to be scared but well done for having the courage to post on here.

About Riluzone: I’ve talked it for over 3 years and haven’t had any issues with it, but we are all different. I think the it’s worth a try because it can give us an extra 9-18 months lifespan.

Take care, Lynne

[SueM]

Hi Olly, welcome to the forum. I was only diagnosed last September with Progressive Muscular Atrophy type of MND. Similarly to you my hands, arms and shoulders are affected but not my legs at the moment. I had started Riluzole but one month in and my liver was affected so currently taking a break, if my next bloods are ok I’ll restart. It’s the only drug that may help so I think it’s worth a go, you should be monitored for side effects, so I think the risk is fairly low.
Take care, keep healthy.
Best wishes Sue

[Barry52]

Welcome Olly and I’m pleased you have found us as I find the support from this band of brothers and sisters makes life with MND tolerable. We are happy to share advice and occasionally humour when daily life seems to get us down.

Best wishes for the future and stay in touch.

[richard]

Welcome Ollie to the group no one wanted to join. It is devastating when you are first diagnosed. Happy dreams and plans evaporate into concerns, worries and sadness.

Here you can ask whatever questions you want, shout, scream, cry and laugh. We have all done it. You will get all the help you need here.

Take care and keep smiling

Richard

[jd58]

Welcome Olli to our community forum

[denise]

Hi Ollie
nice to meet you.
Denise xxx

[Olly]

hi peeps, thank you all very much for your kind words of support . I like that you all refer to this group as The Family' thats cool. I do have lots of questions to ask but is this the place to ask them or do i have to tap into specific threads for certain things ? One thing ill ask now is ever since ive had symtoms of mnd my urine has took on a rather strange, strong odour. its not sweet smelling & i dont have diabetis ? Any one have similar ?

[Ellie]

Olly Urine like that is not normal - are you dehydrated, meds side effect? You should get it checked out anyway.

[Lynne K]

Hi Olly. It sounds to me that you aren’t drinking enough because I’ve only had those urine symptoms in that case so I take my own darker urine as a warning to drink more. It ought to be light in colour and not smell. If it doesn’t improve after a few hours of drinking plenty of water or other liquids then a call to your GP for a urine test would be the safest thing to do in case you have a water infection. Not drinking enough can result in not only dehydration but also water (and kidney) infections. I hope that plenty of liquids sorts this out for you. Lynne

[slp]

Hi Olly. Welcome x

I have been taking Rilluzole for 8 years without any side effects. It's all we have atm so I would try it. I take Baclofen and that will really help your achy legs and reduce the need for the stretching,I remember that and it is awful. Hot wheat bags and Tiger Balm will help too

Lynne and Ellie are spot on about the dehydration so try and increase the fluid x I rely on gin and tonic
stay safe
Sarah xx

[Beemer]

Hi Olly, Welcome,
My weakness is in my arms and shoulders, they are all but useless. my leg strength is diminishing but can still do the stairs, and get out of breath, but otherwise my breathing seems OK. An increase in saliva during the day and a dry mouth during the night.
I have been taking Riluzole from the start of diagnosis and not seen/felt any side affects.