worsening symptoms, diaphragm concerns

[Annie77]

Dear all,

you have given me some encouraging advice last time I wrote, which i am so grateful for. I'm a little ashamed to be back, but things are just getting worse and worse, and I was hoping to get some insight on new symptoms that have crept up. In short my symptoms after 6 month when I last wrote were twitching (started in feet, still there non-stop, now also in many other places), problems with right ankle (I can do everything, but there is a big dent and it feels like there's a sprain, which is making it hard to walk), very pronounced atrophy of left thenar muscle.
My NEW symptoms are:
- weakness of left hand where the atrophy is. Again, I can still do everything, but my hand shakes when typing and there's a feeling as if it's waking up after being asleep. I get frequent pains (cramps?) in my palm too.
- diaphragm twitchíng? It is pounding and pounding and feels like I've been punched in the stomach, very heavy. My stomach muscles have also been twitching for 2 months straight, sometimes also my chest muscles.
- for 3 weeks now I've been getting spasms between chest and throat, actually it's painful all the time, I'm not sure it's related to swallowing, but definitely think it's my oesophagus. Awaiting and endoscopy in May.

So now I'm very worried these upper body issues are all the result of a weak diaphragm, wich, combined with the twitching, the atrophy, the bad ankle and the weak hand, make me think; how can it not be ALS? Do these diaphragm / oesophagus symptoms sound characteristic? I'm very concerned..
I've been waiting for a neuro appointment to follow up after my EMG for ages, it's scheduled for next week. I basically wanted to ask the details of it. There was activity, but the neuro said 'If it was ALS, there would be more going on'. I found that reassuring, however all this new stuff has come up since, and now I'm feeling insecure, especially as no muscle was silent when EMG'd.

I know I should be patient and wait for the appointment, but if someone could find the time to comment on those diaphragm and chest issues I would be so so grateful.

Sorry, this was probably all over the place.. Thank you for reading and all the very best to you!

Annie

 

[Annie77]

I'm a 38 by the way, which I know is young, but not super young either...

 

[ECpara]

Your diaphragm issues don't sound anything like ALS. Pounding? Are you sure you're not hearing your heart due to anxiety? My husband's diaphragm is failing.......he doesn't "feel" a thing. But he can't breathe well, his CO2 is elevated, and his stomach muscles do some of the breathing for him. The onset of all your new "symptoms" also point away from ALS. They are all over the place, in ALS they generally begin in one area and gradually move elsewhere. I would listen to your neurologist, he didn't see anything alarming. Good luck.

 

[Annie77]

Thank you for answering. The pounding I feel I thought might be twitching, as my stomach muscles are also constantly twitching. But I do hope it's just anxiety related. It was encouraging that you wrote the onset of my symptoms seemed too random, I did wonder about this myself. Having left hand and right ankle problems doesn't seem characteristic from what I read, as usually one side seems to be affected first? Still there's no explanation yet and it's getting worse by the day. But I shouldn't self-diagnose, it really isn't helping.
Thanks for taking the time to offer some advice, I am truly greatful.

 

[Annie77]

Hello, i'm back with some troubling EMG results i would appreciate some insights on. I'm very confused.
EMG testing of 4 muscles (hands, calf and chest) showed large MUP's. No fibs or PSW's however. My hands have gotten very weak lately, i have Astrophysiker in left Thenar and other Symptoms. I'm now very concerned.... My neuro wants to do more testing, lumbar puncture is next.
I'm very scared it's ALS. Are there always fibs and PSW's present in ALS, or are fasciculations and karge MUP's already diagnostic? My neuro is being quite Vague and has only told me that karge MUP's are a sign of chronic denervation or an old injury. I've never really had a my injuries i can think of that would explain this though...
Is there anyone here who can tell me what this could mean? Do i have reason to be alarmed?

Nikki, sorry i started a new thread initially, i didn't realise this one was still open.

Thank you all for reading, i hope i can stop worrying soon, and i am sorry to trouble you if i don't belong here. but at this point i'm
almost convinced it's ALS .

Bless you all

 

[Annie77]

Oh and that was meant to read ATROPHY of left Thenar, my predictive text is ser to German ;-)

 

[Nikki J]

If you do a search here for large MUPs you will find it discussed a lot. And those people who had isolated large MUPs without fibs and psws not only don't have ALS they don't come back later with a diagnosis in my memory
If your neuro is seeing true atrophy then it needs to be explored snd it sounds like that is happening. Good luck in finding answers

 

[Dusty7]

ALS is a disease of widespread, acute and chronic denervation. Large MUPS are a sign of chronic denervation, but not acute. From what you report, there is no acute denervation, so while you have some problem, it does not sound like ALS.

 

[Annie77]

Thank you Dusty and Nikki for the encouragement,
I so hope that there will be another explanation. So far nothing has come to light, I've already had quite a few tests done. Weakness was found in my left thumb that has atrophy though. And now this... I'm worried that while it's only large MUP's now, signs of acute denervation will follow. I don't know what comes first usually, but I read in some post here that sometimes fibs and PSW's don't show up. I think that was written by an undiagnosed person however who was also worried about large MUP's. The sheer diversity of information found online is making me feel quite insecure.

 

[Nikki J]

I believe you are correct about that person being undiagnosed. There are lengthy and repetitive threads with people insisting that their large MUPs are the first sign. It somehow never happens that they return with a diagnosis. Try not to turn into one of those people it will make you miserable

 

[Annie77]

That's definitely good advice, Nikki, I guess there's no point in speculating and second-guessing anyway. It's a waiting game, I will see what comes up in the next tests and hope for the best.
Thank you

 

[MaxEidswick]

>Try not to turn into one of those people it will make you miserable

Ditto that!