6 months of symptoms, very concerned

[Annie77]

Hello, my name is Anna, i'm 37 years old and was hoping to get some opinions on my situation. Thanks you very kindly in advance for taking the time to read, I will try and keep it short. I have been having progressing symptoms for 6 months:
- twitching inside, below and on top of feet in the beginning, now also in many other muscles all over my body, constantly
- discomfort and pain in shoulder/biceps upon lifting my dominant arm
- discomfort in corresponding shoulder blade
- a shrunken looking flat and dented muscle on palm, below thumb (no idea what it looked like before)
- breathing issues: frequent urge to take full breaths
- and the final straw that had me really worried: a really weak uncomfortable jelly feeling inside my outer calves, above the ankles. Started on the right, now on both sides. It feels horrible, almost like restless legs or and intense itchy sensation in the muscles. Walking on tiptoes and heels luckily works, but the feeling is always there and getting worse by the day.

Now, I've had a neuro exam in December which went ok. Reflexes were 3+ but considered normal and symmetrical. Last week I had an EMG which left me a little insecure. When he neuro stuck the needle in my troublesome biceps muscle there was a lot of activity and sound. She kept telling me to relax, but I was relaxed.. She told her colleague there was 'activity', but concluded the exam by saying she can't see enough evidence of a neuromuscular condition. I guess the word 'enough' threw me a bit. She said if it were ALS there would be a lot more going on. I didn't really ask anything after that, just felt momentarily relieved. But I wonder - shouldn't there be nothing at all going on in a healthy muscle? I keep wondering if I should have maybe gone to a neuromuscular specialist as I hear that interpreting an EMG is somewhat of an art.

My questions, if you don't mind me asking, are:
- do you think with my symptoms a visit to a neuromuscular specialist would be advisable?
- does the outer calf/ankle issue sound like ALS or is it really quite unusual to present symmetrically within a couple of months?
- is it generally all about much for ALS onset? I heard respiratory issues were quite rare to begin with.. Still I don't understand why I have all this going on.

Sorry this did turn out to be lengthier than intended.
I thank you for any advice or opinion.

 

[Nikki J]

There are many many things that show up on EMG and most have nothing to do with ALS. I suggest that you schedule an appointment with your current neurologist and ask for an explanation of exactly what they did see and what it meant or might mean. There are several specific things that show on EMG and you need to have all of them for ALS to be on the table.
No those symptoms do not sound like ALS, symmetrical presentation within a couple of months happens with very fast progression which would have been glaringly obvious to your neurologist and to you.

I do not understand your last questions but respiratory arm and leg involvement in such a short time would again be so aggressive as to be undeniable
Please refer to the sticky in this section and re read it for comments on twitching and pain

 

[Annie77]

Hi Nikki, thank you for your quick response. Auto-correction messed up my last question a bit, oops. I basically wondered if these were too many symptoms at once, especially as I heard that respiratory issues usually aren't an early symptom. But your answer was really helpful.
I did make an appointment to clarify the EMG findings, but couldn't get one til April now, which is quite frustrating.
Thanks again for giving me your thoughts, I did think it's all a bit quick and global, but I just have no idea what else it could be, especially as thenar atrophy is always mentioned in the context of als and mine is really quite clear, the neuro actually pouted it out to me.
I will try and relax as much as I can until the next neuro appointment.

 

[GregK]

You have many references to things not 'feeling' right. Here is a quote from the Sticky which I suspect you failed to read:

Clinical Weakness—ALS is about failing, not feeling.

There is much more info in the Sticky, so please read the sticky note at the top of this forum titled "New Members: PLEASE READ BEFORE POSTING!"

Most of your questions will be answered there. If they're not answered, then ask here.

:^)

 

[Dusty7]

ALS is a disease of widespread, acute and chronic denervation. Your EMG findings were certainly not widespread, and it sounds like the worst the test may have showed was a small amount of insertional activity in one muscle. Insertional activity is indicative of current denervation which could be caused by many things, such as a pinched nerve in the shoulder, spine, brachial plexus, etc.

This really sounds like a local problem, not ALS. "She said if it were ALS there would be a lot more going on." I agree completely.

 

[Annie77]

Thank you, that certainly sounds reassuring.. My neurologist did leave the needle in for quite a while and the muscle activity didn't seem to calm down. She made me position my arm differently a few times to help me relax the muscle, but that didn't work. But the other 3 muscles she tested were quiet as far as I could tell, including the thenar which has the atrophy. So I've taken comfort in that.
In terms of the feeling in my legs, I did read that weakness is not usually associated with any feelings as such. As it's such a deeply uncomfortable constant aggravated sensation accompanied by twitching and nocturnal leg kicks, I did wonder if it was some kind of spasticity. I guess it's this whole combination of symptoms that had me so thrown. I just find it hard to imagine that these are all unrelated things that have developed at the same time. It's so puzzling.

 

[Annie77]

Hello again, I'm sorry to come back again with a follow up question, I will be super brief: I realise that ALS is usually not associated with 'feelings' as such. However, additionally to the horrible weak jelly feeling in my legs that gets worse by the day I now have the same in my left hand, little finger to wrist, creeping up into my arm. It feels so so weak, a ticklish kind of weakness, and my hand shakes when I hold my phone. So it is definitely weak but also 'feels' weak. Would it really be very unusual to feel weakness 'coming on' like that? My hand also jerks a lot at night, just kind of moves on it's own when I relax. Is that a possible symptom? I'm just so confused by all this and am setting seriously worried.
Thank you again for your attention and sorry for whining...

 

[Nikki J]

Yes very unusual. No hand jerking does not sound worrisome. Make an appointment with your regular doctor. He/she may be able to explain EMG but even if not to talk about handling your fear while waiting for appointment

 

[Annie77]

That's a good idea, waiting for the neuro appointment might drive me up the wall otherwise..

 

[Annie77]

I'm back again.. Still waiting for a neuro appointment to have my EMG explained to me. My GP couldn't really help with it.
The reason I'm writing again is because in the meantime more symptoms have arisen and I was hoping to get some opinions on these.
- For one, my right ankle is really bad now. I don't have foot drop, but the a very uncomfortable rubbing irritated and jelly-like feeling inside my right ankle (there's also a visible dent) is just terrible with every step. Feels like it might give out any day. Could this be the start of foot drop, does anyone know?
- Another thing is that for weeks now my back has been extremely achey, I can hardly sit upright, so uncomfortable. Does this sound like a possible symptom?
- And finally, I started having a permanent burning sensation in my tongue, like I've burnt it on soup. Is that a bulbar symptom?

I'm so lost as to what's going on with my body and I really fear more and more that it could be ALS. The only positive thing is that my reflexes were checked by my GP and were apparently absolutely normal. Not sure how important this is in the diagnosis process. Also, I was thinking there seems to be a lot at once for it to be ALS when there is no obvious paralysis yet. But I just don't know, nothing else seems to explain all this. The twitching is out of control too and I get cramps in my hands whenever I do anything strenuous.

Thank you very much for taking the time to read and possibly some more insight. I just don't know who to turn to right now..
love, Annie

 

[Atsugi]

Hi Annie,
In this last post of yours, you didn't mention anything that was ALS-like.
I don't know what is the problem, but it isn't ALS.

 

[ECpara]

Each post you have written talks about what you are "feeling"; aching, burning, uncomfortable, jelly-like, ticklish, irritated, uncomfortable. See the pattern? ALS doesn't work that way, muscles just start failing, little by little. And your body wide twitching is caused by stress....it is a fact that fearing ALS can actually bring on body wide twitching. Wait for your appointment and in the meantime try to relax. And stay away from google and this forum, it is feeding your anxiety. Good luck!

 

[Annie77]

Thank you both. I do hope you're right. I have rational moments of thinking my anxiety about all this has enhanced or even brought on many of the symptoms. Then other times I look at my shrunken thenar, all reason goes out of the window and I start linking all the symptoms again until the only thing that makes sense is ALS. It's true, I should really stay offline until my appointment. Saying that, your comments have helped tremendously, so thank you very much. Take care, Annie