Help with nerve problems

[random person]

Hello,

Thank you to all for reading and answering these questions, especially when many of you are going through trying circumstances.

I am trying to understand whether I need to keep MND in mind in relation to some long running problems I have been having for over a year. I never thought about it at all until things just kept lingering and lingering and potentially worsening in weird ways.

It all started with ongoing arm and shoulder pain, and pins and needles at night in my hand. Mostly one side of my body, occasionally the second side. The suspicion was some kind of arm injury (although I was very sedentary at the time recovering from surgery when everything began and can't imagine what happened) and so I was referred to physios and sports medical specialists, etc. The suspicion from all of them was pinched/trapped nerves but none of them could isolate/replicate the pins and needles feelings with nerve stretches, etc. Scans were done on my arms and upper neck (MRIs, x-rays) which turned up nothing obvious. I have also had NCS and EMG done on the most affected side (several months ago now), which turned up nothing.

So I have basically been discharged from the sports medicine clinic and told to work with a physio since it has been identified that I don't have good posture, etc. (Hopefully this is the reason but I don't want to leave a stone unturned...) Physio has basically just given me some upper body strength exercises to work on but doesn't seem too concerned that shoulder pain and pins and needles are persisting. He says that we want to get the nerves to stop being irritated by exercising them. He's not worried about the posture too much as he says otherwise most office workers on the planet would have what I have...

In the last few weeks I have noticed that I am getting some weird extra symptoms such as twitching all over my body - fleshy part of the palms, biceps, quads, calves, etc. It comes and goes randomly in random locations but persists throughout the day. Sometimes when I am working with a particular muscle it will twitch and prolong for longer.

I have also noticed some weakened grip strength - probably very subtle but things like a medicine bottle with a smooth surface almost slipping through my fingers, when in the past I doubt that would ever happen. In particular, pinching with the index and thumb seems to be less strong (I will do a hand grip test with the physio again when I see him next week to see if there is any measurable change.) Other changes are perceived worse balance on my feet and worse coordination (both with my arms and legs.)

Finally, perhaps the most weird thing is something I noticed this week when counting with my fingers. I made a fist with my left hand (this is the most affected side) and started counting by extending the pinky finger, then the next and then the next. Sometimes it seems very difficult to fully extend the finger next to my pinky so that it is pointing up straight and is as far away from my palm as possible - I may have to concentrate to do this. Once that finger is extended, it's almost always the case that my middle finger starts twitching up and down all by itself. It's easy however for me to make a fist and fully open up my palm, no difficulties at all there! I am sincerely hoping that these symptoms are just symbolic of a more mundane nerve issue rather than something serious.

Been to see my regular doctor and he is referring me to a neurologist - he didn't tell me anything about what he suspected. Honestly I didn't care at all about this until these additional symptoms have occurred in recent weeks which made me quite worried...

Any thoughts would be welcome while I wait for an appointment.

 

[lgelb]

A normal EMG coupled with what you describe tells me that you are micro-monitoring what you think are muscle failures. I doubt that is the case, and even if so, you are not describing ALS, fortunately.

I would continue to work with the physio, and believe the neuro appointment will be reassuring. Meanwhile, there is absolutely no point to self-testing. The finger movements you describe are difficult for many people, few with ALS, let alone PALS with normal EMGs.

Live your life.

 

[random person]

Thank you @lgelb. This is reassuring. I also neglected to mention that I have also been feeling more weak with my muscles generally across my body (it's definitely real in terms of my measurable exercise ability, etc.) but appreciate that many things could cause this. When I see the neuro would there be value in asking for a new EMG if they don't recommend one again? I'm guessing by the time I see a neuro it will be close to 5-6 months since EMG. I have read that EMGs are very good at picking up early signs but I don't know how early this might be.

 

[Nikki J]

My emg was abnormal 7 weeks after my first symptom. Not only in the muscle that was failing but in surrounding ones that were functioning well. And I have ultraslow progressing disease ( I had a previously scheduled research emg even as a genetic carrier I would have waited longer to be seen as it seemed trivial). I would let the doctor do their job and not try to direct your care

 

[random person]

Thanks @Nikki J, that is useful to know. I was at my doctor today and asked them about my recent weakened pinching with my thumb and index finger. I also asked them if they could consider doing some tests for other causes of my symptoms (beyond neurological) while I wait for a neurologist - the wait times are (very) long. So I got a physical exam on my hand, checks for wasting, etc. that showed fortunately no red flags. She then wrote me up for blood tests on calcium, electrolytes and CK. The calcium and electrolytes have already come back normal in my medical portal but it appears the CK test has been flagged with an issue and is awaiting a doctor to interpret it - I won't hear back on this until Monday at the earliest.

Does high CK suggest anything from a motor neurone standpoint? My understanding from the doc is that the test detects muscle damage but I suppose there could be several causes of muscle damage?

I have also had in recent days some instances where I've had to swallow food harder and/or felt things getting stuck a little in my throat on the way down. This has never happened to me in my life before as far as I can remember and I totally ignored the first couple of times but then the recurrences have been harder to ignore, as well as the coincidental timing with other weird symptoms. I have read the FAQ and am I correct in understanding that swallowing issues are NOT relevant? And if they ever do become relevant for ALS/MND it is at far later stages?

Thanks for anyone taking the time to read and respond.

 

[random person]

My CK test has now actually come through in my patient portal - not sure why it seemed to be held up yesterday. All normal, which is good.

However, my (very recently developed) swallowing issues have been continuing (Friday lunch, Saturday dinner and now today on Sunday afternoon) and so I feel I have to go back to my GP to get his opinion on this. Appointment availability is never great so I have to wait a week, which is going to feel like an eternity given how unexpected the swallowing issues have been. I have never had any swallowing issues before, don't have any history of anything like GERD.

On Friday I was surprised to find that swallowing some hard tofu was feeling very rough going down my throat, to the point where my throat was sore for a little while. I normally eat that same meal several times a week without incident. I got on with my life and forgot about the incident until Saturday dinner when some green leaves and rice from a curry seemed to get stuck in my throat near my collarbone area. Had to swallow a second or third time to "clear it." Once again I tried to put the problem out of my mind and forgot about it until today when I was enjoying a snack. Some crackers seemed to get stuck in my throat close to the collarbone area - I felt like I had to clear my throat/cough a little and then swallow a couple of times. The area feels a little sore at the moment. I don't think it was a full on choking event but it might have been close?

Can anyone anyone help me understand what the "please read" post means when it says "Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS." A lot of sites on the internet (including quite respected medical sites) are displaying "difficulty swallowing" as a key red flag for ALS and indeed bulbar ALS. I also read a post from a member here that said "often PALS do not have difficulty swallowing, but when they do swallow, they choke and cough."

Any help would be appreciated as this has come out of left field. I had been giving speech/swallowing issues no thought until I've had this issue pop up 3 days in a row all of a sudden. Each time I completely forgot about the incident and got on with life, only to be surprised by the next one popping up. This plus the previously mentioned twitching and my (admittedly perceived, not medically confirmed) grip issues really make me think something is going on now.

 

[Nikki J]

Because that isn’t the way ALS swallowing generally starts. There are definitely swallowing issues once bulbar als sets in and they progress and eventually swallowing becomes impossible if the person lives that long

We don’t like to specifically describe because the mind is powerful and readers can sometimes develop “symptoms” after reading. It is hard not to when worried which is why google is a curse sometimes

You definitely should see a doctor and perhaps get a swallow study

 

[random person]

Thanks @Nikki J, I am seeing my GP tomorrow about my swallowing. Things haven't been as bad as over the weekend but have noticed eating rougher things like muesli bars is definitely rougher/slower going down and even drinking fluids sometimes has an odd sensation. Saliva swallowing is interesting as I notice it a lot more - creates a tickle down my throat as it goes down, and occasionally creates enough irritation for me to want to clear my throat or swallow harder, including when lying in bed. More thin saliva seems to be pooling in my mouth too, although at other times my throat/mouth can feel quite dry.

If my throat is feeling a bit rough/irritated from swallowing I then find my voice gets more hoarse very easily. When I've got saliva in my mouth I find I have issues with "s" sounds more (and thus need to consciously swallow the saliva) and sometimes a little bit comes out the side of my mouth. So weird - if this was happening before the last 7 days I would definitely have noticed it!

No doubt this sounds like the ravings of a hypochondriac but I tend to be quite observant of changes (as opposed to imagining them!) so hopefully I can get some answers from my GP that are more benign.

Quite scary though when you read online that neuro issues cause a significant number (potentially as high as ~75%) of swallowing issues involving the mouth and throat. And I still have twitchy muscles going on sporadically, as well as thumb stiffness and pins and needles at night in the same hand as my thumb...

 

[lgelb]

The stat that's scaring you is based on your presumption that you actually have impaired swallowing (vs. hypervigilance, allergies, dry mouth, GERD, respiratory illness).

An empiric trial of an OTC nasal steroid could be worthwhile as you await further testing, along with a dry mouth spray, blowing your nose more often, etc.

As Nikki says, there isn't a straight line from irritation to ALS.