M41 Advice welcome while I wait for my neurologist appt...

[Airw0lf]

Hello,

Firstly, thank you to everyone on here. I have been lurking a few days and really appreciate everyone (especially PALS and CALS) trying to provide advice to concerned people on here. I will try my best to not waste anyone's time but would appreciate any advice so I can think about what to try next and what questions to ask of the experts, especially since I have a proper neurologist appointment coming up at the end of October.

The reason I am posting this is due to a bunch of strange symptoms I have had over the last 18 months that are refusing to be fully diagnosed or resolved. I am male, aged 41. I am very sorry for the long story but things have seemed to get worse over time which has led to a suspicion of less about a local muscular/skeletal/nerve problem towards something that might be in the brain. If you are short on time, maybe read from #11 onwards in my list below.

I have also had a rough time with a couple of other confirmed diagnoses in the same time frame - keratoconus (which affects the corneas of 1 in about 1000) and atrial fibrillation (which I think is about 1 in 100) so am feeling like I cannot catch much of a break lately. With the keratoconus in particular I had three optometrists tell me my vision issues were not significant. I had to research online what might cause my symptoms and went to an optometrist with specific expertise in the illness who confirmed it within 5 minutes and referred me to a specialist who also confirmed it. As many of you will know on here, it is a very mentally draining process when you have real issues going on and medical people sometimes tell you to not be concerned things but you are experiencing real problems! I am not a hypochondriac but I know my body quite well and pay attention to changes, which I feel sometimes makes people assume I'm imagining things.

Anyway, my story relating to possible neurological problems goes like this. Unfortunately items #1 to #10 are quite long-winded as originally I thought all I had were musculoskeletal problems...#11 onwards is what has got me worried with more new symptoms.

1. From about mid-2022 to end of 2022 I was experiencing recurring pins and needles in my left arm as I slept - mainly hand and fingers. I originally completely ignored these issues as I felt it was due to sleeping in weird positions. I think I also had some pins and needles / cramps in my calves and feet but these were comparatively rare.

2. I have also been having significant bouts of tiredness ever since all these things started. I did a home sleep study in January 2023 that showed I might have some quite low-level breathing interruptions due to sleep apnea. I went to see an ENT specialist who suggested a jaw device to wear during sleep that I am using from time to time - I'm not sure it's making much difference either way. My GP and cardiologist don't feel my low level of sleep apnea is a significant issue for any of my problems - in fact I am the one who has always brought it up with them to ask if it's relevant.

3. By the end of 2022 I was getting more pins and needles overnight as well as upper back and left shoulder area pain during the day. Sometimes the pain was quite strong, although definitely not to the point where I needed painkillers.

4. Went to see my GP at the end of 2022 about these issues and he tested me for carpal tunnel issues with some in-clinic flexing exercises. Everything was normal to him. I also had blood work done around that time for all the usual tiredness and pins/needles and cramping things - electrolytes, diabetes, iron, thyroid, vitamin B12, CBC, etc. All normal.

5. In Jan 2023 I went to see a hand physiotherapist about the pins and needles affecting my left hand and back pain because I was still having issues and didn't know who to turn to. She examined my arm, elbow, hand, neck and upper back muscles. She believed I had an ulnar nerve issue and also observed a very stiff neck that couldn't turn very well to the left or lean backwards. She said I should see a general physiotherapist who would no doubt be able to fix these issues very easily. For the ulnar nerve issue she recommended bracing the arm at night to keep the elbow straight. I have been doing elbow bracing regularly ever since but it doesn't seem to be eliminating the problem - it might be helping however, depends on the day.

6. So I then went to my local physiotherapist to get help on my neck and upper back and to find out if that could be causing the tingling at night. She seemed to mean well but didn't seem to make any progress. She noted that my neck and back muscles were tight and gave me exercises to do in that area which helped a little with flexibility. She tried to reproduce my tingling issues by doing nerve stretches but it was very, very hard to reproduce. Or I would get different responses on different days - one day it might be a bit like the ulnar nerve, another day the medial nerve. She had no idea what the cause was.

7. Gave up with the physio and went to another one for a second opinion. He ordered some cervical spine x-rays that came up normal and so he referred me to a sports specialist doctor to investigate further.

8. Fast forward to May 2023 when I finally saw the sports specialist. She was very helpful and listened to all of my concerns. The sore back and pins and needles in my hand had been persisting so I was quite keen for some answers. The doctor did a whole bunch of strength tests with me and identified that my left hand fingers could weaken/fatigue with repeated effort. She ordered an MRI of my neck which showed some minor abnormalities but nothing significant. We then did the left elbow MRI which was completely normal. Finally, she ordered a thoracic outlet MRI since I have a tendency to hunch/stoop over which might put pressure on nerves in the area. That was also completely normal.

9. At the end of May I also had a neurophysiologist do an NCS (both arms) and EMG (left arm only) that came back normal. So no signs of pinched nerves or anything like that. This was not a proper neurology consult, just the tests.

10. Fast forward to July/August 2023 and my sports doctor has suggested she's investigated all she can and referred me to her physiotherapist to work on improving my upper body and arm strength, etc. The physio observed some odd nerve issues in his tests - e.g., both my arms below the elbow are not good at sensing the difference between sharp pin pricks and/or blunt objects touching my skin. He gave me some nerve exercises to do and some upper body strength exercises to do. He feels things are going in the right direction even though I still get pins and needles at night, and I have noticed both my hands getting more fatigued during the day. E.g., using my mouse often requires me to switch from one hand to the other as one hand gets "tired," cramped, sore, etc. He has told me to come back and see him mid-October.

It's mainly in the month of September 2023 where I started to get quite worried about whether something else is going on as more new problems have been showing up at once and rapidly.

11. I have now had nights with pins and needles in both my feet/calves as well as my hands. In some cases, I have woken up and spent the day with cold/tingly feet, etc.

12. I have felt that both my arms and hands have got weaker (perhaps not the medical definition of weak) because I can do fewer reps of my really simply physio exercises. Driving and turning the wheel can tire my arms out quite easily. Holding a fork for a while whilst eating dinner in front of the TV tires my hand out and reduces my grip strength and hand dexterity. Similar issues with handling a computer mouse or typing.

13. I feel my balance has got worse in recent months - it has crept up on me to the point where I now notice it. E.g., if I am going for a walk, if I am not paying attention to where I am going, I will sometimes find my right leg will just step out towards the right instead of moving directly forward. If I pay attention to where I am going it is mostly OK. When I am walking, I feel like my ability to change direction and turn is going more poorly - unlike being able to turn on a dime I have to be slower and more deliberate about how I turn.

14. I see my coordination is also declining in the past month - I am a very good typist but have been making quite simple errors quite regularly. I either miss the keys slightly or when I push down on a key while touch typing the finger slides off a key and onto the next.

15. Getting muscle twitching all over my body at random - calves, thighs, biceps, etc. It doesn't feel too violent but happens at least once or twice every hour. Sometimes I can see my bicep twitching up and down like a bodybuilder would do with his pec muscle.

16. Sometimes when I am lying in bed and half-asleep I notice a choking type sensation and a feeling of saliva going down my throat. I always used to put this down to my minor sleep apnea but now I'm a bit more concerned about it in light of all of the above happening at once.

So I have gone to see my GP again about all of the above and he basically said to me "you are a mystery, man" and referred me to a neurologist whom I will see at the end of October for presumably a full neuro evaluation beyond just the NCS/EMG done back in May. My GP thinks I have some other weird issues like tight, shiny skin and cold hands/feet but I don't know if these are relevant to be honest.

I have also gone to see an osteopath now about these issues and they think my tight muscles might be affecting/compressing my nerves. They have been doing some stretches in the neck/back area to see if that helps - so far it's too early to tell. They did a balance test plus reflexes test on me yesterday with everything seeming mostly normal except for what they said was slightly low reflexes. I also noticed that for the tests that required me to walk with one foot before the other, my balance wasn't as good as when I have done it previously - the balls of my feet and calves seem to just wobble sideways in a weird way as if they are unstable. I don't fall but it's not normal for me. With my eyes closed my balance is definitely not as good as it used to be - I can sort of feel my body start swaying slightly when I doubt this used to occur in past months.

So that's my story for now. I would really appreciate any insights while I wait to see the neurologist. My GP appears to have given up, as does my sports doctor and the physio she referred me to. So I don't want to go in to see the neurologist and waste his time telling him a pile of irrelevant crap and would rather he focus on the most important potential symptoms.

I am hoping that maybe a lot of my issues stem from having stooped/rounded shoulders and a neck that tends to crane forward. I think that's how my posture has been for a long time but then again I worry that might have caused myself and others to ignore certain issues. So confused!

 

[lgelb]

You have several features of scleroderma. Was this ruled out by a rheumatologist?

I don't see any reason to worry about ALS.

 

[Clearwater AL]

Suggestion... copy and print out from 11 down to 16 and let the Neuro read it
so you don't forget anything. Or... all the way to the bottom.

That will give him/her your full cover of symptoms and your feelings.

 

[Airw0lf]

You have several features of scleroderma. Was this ruled out by a rheumatologist?

I don't see any reason to worry about ALS.

Thank you for the reply and the suggestion on scleroderma. My GP has never mentioned it or even the possibility of referring to a rheumatologist, but I might bring it up with him when I next see him. I did a quick Google of scleroderma now and it's possible that he ruled it out because I did have various bloods done to check for things like signs of internal inflammation, etc. And whilst my skin is taut it may not be as bad as what most people with scleroderma get. But worth keeping in mind...

The main reason I was worrying about serious neurological issues like ALS, MS and so on is partly down to my GP referring me to a neurologist - the penny dropped that this may no longer be a vanilla musculoskeletal issue. And it's the muscle stiffness, muscle fatigue, twitching and tingling that got me particularly worried, even though I know from the FAQs here that muscle fatigue/weakness isn't the same as failure, and that twitching and tingling aren't usually things that people see early on (if at all, in some cases?) I also was becoming concerned that my poorer coordination and balance might be due to some muscles giving up on me unbeknownst to me. I also have some neurological issues running in the family - dementia (grandmother) and Parkinson's (uncle.) Speaking of Parkinson's, I wonder if that could be considered for the list of "What It Was When It Was Not ALS"? Rigid muscles, tremor and speech issues occur in that disease too and it's not too easy to diagnose.

Will keep everyone updated on what I find out - if nothing else so that it can help other people in future.

 

[lgelb]

Scleroderma has cousins, too. A rheum consult could do no harm. And the labs they run are not always the same as in primary care.

I still don't think you have ALS or anything like it. A GP is trained to refer you to a neurologist when they want to rule things out, not only when there is suspicion for something in particular. Many people have PD and AD in their family. I don't see that either applies here. But you will soon know more.

 

[Airw0lf]

Suggestion... copy and print out from 11 down to 16 and let the Neuro read it
so you don't forget anything. Or... all the way to the bottom.

That will give him/her your full cover of symptoms and your feelings.

Thanks - I will do that as time is usually very limited and I won't be able to speak as efficiently and might miss details out.

Scleroderma has cousins, too. A rheum consult could do no harm. And the labs they run are not always the same as in primary care.

I still don't think you have ALS or anything like it. A GP is trained to refer you to a neurologist when they want to rule things out, not only when there is suspicion for something in particular. Many people have PD and AD in their family. I don't see that either applies here. But you will soon know more.

Yeah, the more I think about it the more I think there's value in a rheumatologist consult - even if all it does is rule out that area of investigation. Although I do think my GP is right that the neurologist is an important or the best port of call given the tingling feelings and muscle twitching. As I type this my right bicep is bouncing up and down through my jumper. It goes for 10-15 seconds, then stops for maybe 10 minutes and starts again. Other muscle groups also come and go like this - calves for example.

But I had a phone consult with my GP yesterday and asked him more about the muscular side of things. What is really concerning me on that front at the moment is my arm and hand weakness which seems to have come on quite fast in a number of weeks. Maybe it has been happening in the background and only now being noticeable. Doing the simple 5kg arm weight exercises from my physio has got noticeably harder for both arms. Gripping a full cup of coffee in my right hand using my thumb and index finger feels heavy. My left hand fatigues quite easily as mentioned before, especially affecting my pinching fingers (thumb and index.) Maybe the only good thing with the left hand is that it tends to come and go - there are good periods and bad periods, with the bad periods coming usually after I have used the hand for some time. I also had the NCS and EMG done on the left arm at the end of May which showed nothing, although that focussed more on the arm and only did one muscle on the hand I think. So hopefully that is a good sign even if my grip and left hand pinching fingers are now acting up...

Anyway, the GP wrote me up for a creatine kinase test as I am also taking statin medications which can cause muscular problems although the GP is highly doubtful it is an issue. Guess it won't hurt to see what it says.

 

[Airw0lf]

Apologies for another post here - had a concerning day today. Driving home from a walk in the park with a friend I found turning the steering wheel to the right very challenging on sharp/90 degree corners as you have to use both hands to turn the wheel and cross one arm over the other. My left hand - which needs to do most of the work on a right turn - was not doing a good job of gripping the wheel and it was sliding along the wheel because it couldn't keep up with the turning being done by my right arm. So it was a process of constantly clutching at the steering wheel with my left hand and trying to keep up but not being very successful. As mentioned in earlier posts, I had previously felt driving was becoming more difficult, tiring, etc. but didn't expect something like this to happen today.

Immediately my mind was going to whether this is failure or weakness. Trying not to freak out too much about it yet. Is it a positive thing that my left arm had a fully normal NCS and EMG on the 31st of May? This was from the triceps and biceps down to the first dorsal interosseous. If problems are elsewhere (e.g., in my left shoulder or parts of the hand/arm not tested) to cause the issue would they still show up on the EMG or would that specific area need to be tested very closely?

It also did not help that on the walk today I noticed my right toe scraping along the ground on three occasions. Twice it happened whilst we were climbing up a fairly steep slope and maybe it happened because I am not used to steep walks. The third time it scraped against an uneven wire mesh surface on a bridge. Do I need to keep track of these incidents to tell the neurologist at the end of October?

Thanks again for anyone taking the time to read and respond.

 

[lgelb]

We seem to be back-tracking. Please don't post again until you have some news from a new medical appointment. Sounds like that's end of October with the neuro.

Failure due to ALS is not something you are going to wonder about.

We have discussed negative EMGs. Yes, shoulder problems would show up in the arm muscles since the hallmark of ALS is certain abnormalities in muscles that seem fine.

You can track the incidents all you want, but bring a summary, not a book, to the neuro. None of these incidents sound sinister to me, each has explanations, and even if you had some that didn't, those sort multiply with anxiety.

 

[Nikki J]

As Laurie says a summary with a couple of specific especially to illustrate a consistent problem not a random one.

If you can’t properly control the car wheel you should not drive whatever the reason for the difficulty