Back after 8 months

[Shepster34]

I had an EMG 8 months ago which is also the last time I posted on here. It was clear. The neuro said that if the EMG was clear I did not have PMA. I did not share his view as I knew something wasn’t right and some people with PMA don’t show on the emg straight away. I only have lmn signs. Atrophy, weakness and some absent reflexes.

since then I now have weakness and atrophy in my other arm (left) and weakness has recently started in both shoulders. Both shoulders are equally atrophied also.

Both arms ache even when I’m resting them, and when I use them they are quite painful. I cannot lay on my sides anymore as it hurts my shoulders when I do. I believe they have atrophied so much they are affecting my shoulder joint when I’m laid on it. Both have started doing this at the same time.

I’ve heard PMA is very unpredictable and can start anywhere. Is it usual for PMA to start in both upper arms without any muscles failing, just weak.
it’s affected both sides equally with both brachialis completely atrophied in both arms and not affected my biceps at all which are directly on top of that muscle and I believe on the same c5/c6 nerve root.

Although both arms are weak and atrophied, neither hand has been affected at all. My hands are still very strong with no atrophy.

I’ve also noticed I’ve lost a lot of muscle around my buttocks and it’s quite painful when I sit on anything solid. Is the buttocks muscles classed as torso or a limb?

surprisingly I have very few fascinations even with all this atrophy. I do get a few pops if I overuse a muscle but only for a few seconds then it disappears. the muscle that has atrophied in both arms (brachialis) never once twitched. The first thing I knew was when I noticed the atrophy and the dent left in my arm)

im struggling with all this. I can’t get to see the neuro until the end of the month. I’m not sleeping (mainly because I was a side sleeper and can’t handle the pain) but I’m also very depressed as the progression seems to have quickened.

im going to ask for another emg and this time I think it will show on the EMG. I seem to be getting atrophy all over. My shins and ankles are just bone now and I don’t get why both buttocks are so wasted and painful.

Sorry for messaging again but I have nowhere else to turn and need your input what’s happening to me.

[aussiegirl]

im going to ask for another emg and this time I think it will show on the EMG.

To me it seems you're determined to have MND, why that is is anyone's guess. It took years before I noticed atrophy in my muscles, not months. Take the advice from the professionals.

[LindaB]

Shepster34 sorry I can't offer any medical advice. I just wanted to say living with anxiety is physically devastating and waiting a month to see a neurologist can feel like a lifetime. Maybe your GP could prescribe pain relief?
Stay as strong as you can and use whatever strategies for distracting your thoughts possible.
Take care

[matthew55]

Live each day as it is, and don't worry about something that may never happen.

[Lynne K]

Shepster34 good luck for your neurological appointment this month. Love Lynne x

[Suefromwakey]

Shepster nice to see you back even if for the wrong reasons, I shall keep everything crossed for you............are you at the point now where you can say you need a second opinion? - that's what Albert had to do as we were getting nowhere............I recall you living near Sheffield? they have what looks like a brilliant set up for MND maybe push for that?

Sue

[Shepster34]

hi Sue, yes back again. how is Albert. hope he is ok.

the more I read up about it, I'm worried it could be flail arm or bad as it's now called.

I've been reading about how it can start in proximal upper arm and shoulder muscles in both arms like mine.

could anyone with flail arm please pm or let me know how their symptoms started and the muscle progression.

my hands are very strong and unaffected so I wondered if that was normal with early flail arm.

[Ellie]

I've been reading about how it can start in proximal upper arm and shoulder muscles in both arms like mine.

If you've been reading up on FAS/BAD, then you would also have read about its EMG abnormalaties.

How are your lungs with the Pulmonary Fibrosis - is that impacting on your health?

[Shepster34]

hi Ellie.

the last EMG was 8 months ago. I speak to the neuro again at the end of the month so I will ask for another to see if anything is now showing. i definitely had atrophy back in March in my right arm but it was not as weak as i am now. so i was shocked when it came back clear.

my IPF is mild at the moment thank goodness. my spo2 during the day is 95%-96% and thankfully doesnt go down yet with exersion. however, I do feel breathless with exersion so god knows what's happening with that. unfortunately my spo2 drops dramatically during sleep so I may have something else going on there. gp suspects central apnea so may need niv once I've had a sleep study.

[Ellie]

Did your Respiratory Consultant comment on your extensive atrophy?

You’ve obviously had an overnight SpO2 monitor to know that your Sats “drop dramatically during sleep” - when was that test?

You must have had a full suite of pulmonary function tests on diagnosis, which can’t have been that long ago and should have identified issues.

[Shepster34]

I have bought a professional spo2 tracker that i have been using to track my sleep. it's the same as what the nhs give you when they want you to perform a sleep study at home. this had shown me that once I am asleep my spo2 levels drop. I showed my gp my results and he is booking me for an in depth sleep study at a sleep clinic to look at not only my spo2 but my co2 levels and what exactly is happening once I'm asleep. hes checking co2 levels as I wake every day with a headache. I dont know if its linked to mnd or ipf or none and it's some form of apnea. my gp said because I an not overweight he doesnt think its osa and more likely central apnea.


I had a hr ct scan on my lungs and have had a barrage of tests including walking o2 / hr tests and spirometry on a large machine in the respiratory dept at my local hospital. I saw the pulmonologist who stated it was mild ipf at the bottom of my lungs but I was not in need of any medication or oxygen at this time. my spo2 doesnt drop during exersion but I still feel a little breathless. although he saw me with my shirt off nothing was mentioned about my atrophy as it is very symmetric. I didnt mention it, I think its mnd nothing to do with my ipf.

i can see atrophy in my shoulders and arms, i look at photos even from a few years ago and i see it. but it's the weakness in these areas that is worrying me. I tire very easily. I can still do everything for now but I dont know for how long for.

[Shepster34]

I keep reading mnd is not painful but i find that as both arms and shoulders are weak whenever I lift anything the ache that I get from doing it can be.

when I lift anything that requires me to bend my arms I find I sometimes get a sort of mild shooting pain up my arm. it's definitely more than an ache. my grip is perfect so I sort of wince without dropping it.

my shoulders ache whenever I hold anything for any length of time but when I lay on them at night I find it's quite a sharp pain deep inside.

[Shepster34]

Screenshot_20211112-183124_ViHealth.jpg

here is last nights results. my tracker wakes me up at 85% so the lowest I got was 84%.

I get woken up at least twice every night as my spo2 plummets.

[Shepster34]

Shepster34 sorry I can't offer any medical advice. I just wanted to say living with anxiety is physically devastating and waiting a month to see a neurologist can feel like a lifetime. Maybe your GP could prescribe pain relief?
Stay as strong as you can and use whatever strategies for distracting your thoughts possible.
Take care

thanks Linda.

yes the wait is killing me. I'm not sleeping at all, and when I do I'm having horrible night terrors.

I've progressed so quickly in these last 8 months. much quicker than before which seemed slow and linear. my shoulder weakness has gone off a cliff.

I am so scared what the new emg will find I'm almost scared to have it. I know I have weakness, atrophy and no reflexs, it's like I'm waiting for the last piece to drop into place. Iam sure the last emg 8 months ago missed something.

I am so low but dont know where to turn. I've tried everything to take my mind off it but as my arms ache all the time I have this constant reminder.

I am currently on sertraline ¹ but doesnt seem to be helping.

[Shepster34]

To me it seems you're determined to have MND, why that is is anyone's guess. It took years before I noticed atrophy in my muscles, not months. Take the advice from the professionals.

hi aussie girl. I really dont but my weakness is now too much to ignore. I look back at photos and can clearly see the atrophy.

but the biggest change is how weak I now am. I struggle to do day to day things. I cannot use my arms or shoulders for long. just holding my phone to type is a struggle as my arms ache. I have a desk job and it's getting harder to hold my arms out to type.

the fatigue I feel at the end of the day is unreal. I fall into bed And my arms and shoulders just throb from the fatigue. unfortunately even though I'm shattered I just cannot sleep.


I'm sure the next emg will show up dirty. I really dont know how you all cope with this. you are all much stronger than me.