New here from yorkshire

[slp]

Hi I am sorry for your frustration
I had fasticulations at the beginning but rarely now and have never had any pain
I hope that you get answers soon
stay safe
Sarah x

[Shepster34]

Hi

well that didn’t last long.

after everything I’ve said, I’ve woken up in the middle of the night with fasciculations in my legs, they are even in my feet. I actually thought I felt a few yesterday but now they’re definitely here full time. They actually woke me up.

i guess that’s the final piece then. That’s the full list of symptoms.
i expect the emg will show mnd in March. it just seems to be one thing after another.
My neuro said no umn signs yet, but that was over 2 months ago, it may have changed now or I’m sure that will change at some point. I seem to be getting worse much quicker.

my right arm is getting worse. One of my arm muscles is totally wasted away and left a dent in the arm, it’s now just loose skin. I can’t loose my arms, I can’t to anything without them.
I’m too young for this. My house is too small and will not accommodate this disability. We have 1 upstairs bathroom. The rooms downstairs are small. I am 50 and my wife is 48. My wife will still need to work so we can afford to live. I don’t know who will care for me while she’s not here.

I already have pulmonary fibrosis, my lungs are affected so I cant see me lasting long with weak lung muscles too.

So many things going around in my head.
i would ring mnd connect but They don’t think I have the typical symptoms of this but I have weakness, wastage, fasciculations. I just don’t have it in one limb, I have it all over. They said it doesn’t cause pain, I think my pain is more to do with my elbow joint than pain from muscle usage.
Is there anywhere that we can ring that offers emotional support for this. I can’t bother mnd connect again.

I don’t want to be a burden on my family. I’ve spent the last hour in the bathroom in tears. How do you all cope with this.
im struggling to see how I will cope physically, mentally or financially.

[matthew55]

I'm sorry to say this but you already are a burden. No one can tell the future so why worry about something that hasn't happened yet?

[Shepster34]

I'm sorry to say this but you already are a burden. No one can tell the future so why worry about something that hasn't happened yet?

I wish i was as strong as you are Matthew. I guess im grieving for the life i know i wont have. Not seeing my daughters get married or see grandkids, not travelling the world and growing old with my wonderful wife.

its being a burden thats worrying me. Knowing my poor wife has to do everything including my toileting is absolutely killing me. Having no dignity at all. And having to hold down a full time job to make ends meet. Its not fair on her.

I want her to remember me as the guy i was not the guy i will be soon.

[matthew55]

I do understand but please don't soil that memory by changing into a doom and gloom merchant. I'm NOT strong, I just choose to accept my fate and face it with humour rather than dread. Stay Strong for others. 👍😍z

[Shepster34]

I do understand but please don't soil that memory by changing into a doom and gloom merchant. I'm NOT strong, I just choose to accept my fate and face it with humour rather than dread. Stay Strong for others. 👍😍z

I guess ive not accepted it yet. Ive had these symptoms over 2 years so you think i would. Although the first year hardly anything changed. Just a general weakness. Plus getting a normal emg 2 years ago, and even the neurologist 2 months ago telling me i didnt have umn signs so its not als gave me false hope. Why cant they just be honest.

Its only since reading more about it that i realise emg's can miss mnd, and my neuro naughtily stating i dont have als specifically and not mnd. To the non medical patients who think of als and mnd are the same, his vagueness gave me false hope as i thought no mnd. When a neuro states no als you think no mnd. It was only after read more about mnd and rang him and pressured him on the other diseases in the mnd umbrella that he admitted there were others and it could be pma. Plus, its only now that ive read pma generally turns to als anyway.

I just cant believe all this is happening. I guess i could ring my gp and ask if i can have some kind of counselling.

[Shepster34]

Hi

Another day and ive noticed more wastage which i'd not had before.
Does this look like wastage on the left of the picture (my right shoulder) i do have a similar line on the other side as it is the groove between the anterior and lateral deltoid but the one on the left of the picture looks like its wasted some of the muscle away showing a much longer groove. Is that how wastage shows itself when the shoulders start to waste, where the muscle striations wither independently? Or does the whole muscle wither down tp a smaller size?

edit. The more I think about it. The deltoid is split into two at the front. The reason the gap is showing is that they are wasting at different rates causing them to part.



20210219_231844.jpg


20210219_233716.jpg

[Shepster34]

hi everyone. realised I'd updated a really old thread from 2 years ago so thought I'd update the correct one here.

my emg has come back as normal even though my arms are weak and wasted. they are getting progressively worse each week. my brachialis muscle on both arms is completely atrophied.

unsure what to do next. should I contact my neuro and ask what is next? should i ask if I can be transferred to the mnd centre rather than hallamshire neurology? should I pay to go private and see a mnd specialist?

I've been told that taking amitriptyline can make mnd not show up on an emg? I take 10mg amitriptyline for anxiety.

is it easily missed on an emg? what should they see if it was mnd? they tested 10 muscles on my right side.

here is the letter I received. 20210627_232614.jpg

[Ellie]

Shepster34 Paul, I think you're best addressing your posts and questions to MNDConnect
- at this stage the average forum member is beyond being able to give you the advice you need.

Best wishes.

[MNDConnect]

Hi Shepster

I'm sorry to hear that you still have concerns. The Royal Hallamshire is a centre of excellence when it comes to motor neurone disease and some of the world's top neurologists work there so to be honest, you are in one of the best places you can be.

If your muscle wastage was being caused by MND, then it's almost certain that you would have significant disabilities in those limbs affected. By the time someone with MND has muscle wastage, they often have very little use of that part of the body, which is what has caused the muscle wastage.

You really need to speak to your neurologist. No one on the forum is qualified to give opinions on your symptoms or your EMG results.

Best Wishes

Rachel
MND Connect Adviser

[Banned]

Hi shepster , hope you're doing well, I'm 43 year old kept myself fit all.my life, started getting musle twitching and swallowing issues 14 months ago and musle cramps and fatigue , had extensive emg /nerve conduction test at end of November 2020 , this came back as normal apart from nerve damage in both elbows, neurologist said no mnd , symptoms have worsened, I was on 10 mg amitriptyline at the time of test for sleep , I did not realise this can effect emg results, I did advise the neuro that I was takeing amitriptyline a week before test.

Keep your chin up fella

Craig

[Lynne K]

Could i ask a question. I keep seeing fasciculations are a symptom, other sites say not. But how many of you actually didnt have any fasciculations in the first few years of your journey? I dont have any yet and have had symptoms for at least 18 months maybe 2.5 years when i first felt a little weaker in my legs.

Or are fasciculations a later symptom once the muscles have started wasting badly?

I cant work out if it is a good sign i dont have any or if it doesnt mean anything?

I didn’t have them until recently after three years since diagnosis and a few years symptoms before that.

I hope that you get your diagnosis quickly and that it turns out to be the slow PMA version. Good luck, Lynne