Upper thigh cramping, weak forearm, and other symptoms

[caliguy117]

Hi everybody. I am relatively new to this forum and hope you find this message well.

To give you some background about me: I am 29 year old Asian male. For months - and maybe years - I've noticed twitching in my legs, particularly in my thighs. I kind of ignored it as I assumed it was stress-related (I probably have a history of anxiety/depression that's not been diagnosed) and possibly caffeine-related as I used to go overboard with the amount of coffee I'd drink a day. I would say I am relatively fit - I used to run more frequently before I had a kid and started to do more calisthenic workouts at home probably 2-3 times a week (lately less). Occasionally, I'll feel a burning and stinging sensation in my upper back when I do pullups, but hadn't got it looked at as I assumed it'd go away. I'll admit too that's my fault - it doesn't help either that I work from home and am behind the computer 24/7. Sometimes I'm at a fixed position for a LONG period of time, which probably doesn't help with my posture and I'll generally be around the computer too when I'm not working and/or playing with my daughter. I generally have joint pain too which seems all around my body.

Earlier this month, my mother was unfortunately diagnosed with ALS at UCSF. I read the sticky up top and she had more obvious symptoms: had weakness in her hand where she couldn't grip her hand in 2014, later showed signs of hand and arm atrophy in 2015, and eventually her leg dropped and voice changed in 2016. Obviously the news is very devastating to me and I want to support her during this challenging time.

At the same time, I know ALS has some genetic component and once I found out about my mom, it began to freak me out. I remembered I had what seemed like a twitch in my right forearm which made me feel a little numb. Since that never happened before and the symptoms I already encompassed, I made an appt to see my PCP. I told him about my story and the joint pains, burning pains, and twitching I have. He did what I think was a shorter neuro exam and said I do not have ALS, which I was grateful to hear. We did standard blood work - all of which appeared normal.

Following my appt, I started getting more symptoms such as:
- painless twitching in other part of my body like my lower left leg and arms
- burning sensations in my joints particularly left thigh, front left calf, left shoulder, left hip, and left ankle
- finger pain/numbness (happened once
- mucus build up and feeling something was "stuck" in my throat making it harder to swallow (I have a history of GERD, IBS, microscopic cilotis)
- more thirst and dry mouth

The strange thing is that these symptoms have either come and go. But the ones that have been consistent are:
- Weakness in right forearm affecting some dexterity of hand. I can still use my hand and forearm; it just feels more challenged and heavier. My outer hand (where the ring and pinky fingers are) seem more difficult to move and holding forks, chopsticks, pencils, etc. aren't as easy
- Both upper thighs cramp more. I did my routine bodyweight squats (granted with less recovery time between sets) last Wednesday and noticed I felt more challenged in the first couple squats and my legs were trembling by the beginning of my last set. It took me 3-4 days to "recover" as I was extremely sore throughout. I tried again last night and felt more challenged again right from the get go. I feel sore still but not as sore as the first time around, but still I felt much weaker
- Consistent back pain. It seems more centralized in my upper back and is usually burning. However, I've also had middle back pain (burns and was dull), lower back pain (dull), and a stiff neck too, which drives me nuts.
- Lower jaw spasm. This usually happens when I open my mouth wide. It kind of feels odd - not painful, but bothersome and feels sort of numb.

Those 3 bother me daily and terrifies me as I perceive myself as getting weaker. I went to neurologist who is a neuromuscular specialist at Kaiser Permanente yesterday, and he performed the neuro exam and said based on the exam, he doesn't think I have ALS. We are still going to move forward with an EMG/NCS, but looking back on our appointment, I mentioned everything except the leg part which is driving me nuts.

Now, I know I haven't "failed" a muscle or anything like that. And I don't know whether feeling more difficulty squatting your own body weight would count as "failed". But hasn't there been instances where there's gradual weakness like I suggested above, which led to actual failure? I generally feel weaker and my leg muscles seem tighter to the point where if I contract it, there's a tremor.

Speaking of leg muscles, I understood spasticity is a symptom of ALS. How would you define spasticity? Would it mean my entire upper leg feels more rigid and muscular?

We did some blood work after my neuro exam and it appears to be normal, but am waiting for my Neurologists interpretation. Having said that, any thoughts on the above? Does this sound like ALS to you?

Sorry for the long message, but I do appreciate your feedback and thoughts. I am grateful for a community like this and hope to keep in touch. Thank you.

 

[starente15]

Hi Pvc - I'm sorry to hear about your mother's diagnosis. My initial reaction is that you are indeed suffering from anxiety and not ALS.

When my father was diagnosed both my brother and I developed spasms in our arms from stress and anxiety. It sounds like you've been told you don't have ALS. That is great news. As hard as it is, you need to not overthink the little things as a racing mind will likely manifest more physical 'symptoms.'

 

[caliguy117]

Hi star: thank you for your kind reply!

I do partially think it can be anxiety-related. On other hand, it's hard not to ignore that my forearms (particularly my right and now my left today) have started to feel stiffer and more rigid and my legs still feel the same and cramp a little. I know you mentioned spasms for yourself, but did you exert any other stress-related symptoms?

Hi Pvc - I'm sorry to hear about your mother's diagnosis. My initial reaction is that you are indeed suffering from anxiety and not ALS.

When my father was diagnosed both my brother and I developed spasms in our arms from stress and anxiety. It sounds like you've been told you don't have ALS. That is great news. As hard as it is, you need to not overthink the little things as a racing mind will likely manifest more physical 'symptoms.'

 

[caliguy117]

Hi all. All my blood work appeared and ruled out thyroid, electrolyte, autoimmune, etc potential causes. I went ahead and scheduled an X-ray to take a look at my spine and see if it's affecting my upper or lower back. Next Monday Im scheduled an EMG/NCV. I am pretty nervous but will keep you updated.

 

[starente15]

Good luck stay positive!

 

[caliguy117]

I'm trying. Sucks because I still have stiffness and cramping in both of my thighs and hips, and new symptoms around my jaw and hand which are making me concerned. I'll keep you posted on how things goes - obviously the bigger test is on Monday.

Any thoughts on my initial post would be greatly appreciated. Thank you.

 

[caliguy117]

As a follow-up, an x-ray was done on my upper back and lower back. Upper back was fine. My lower back, however, showed mild degenerative disc disease most evident to the lowest part of the lower back at L4-5 and L5-S1. I know this could be related to some of my leg issues, but is anyone aware that this would cause leg muscle cramps, particularly my thighs? My thighs experience more twitching and seem to fatigue a little more easily when working out.

For some reason we didn't an x-ray on cervical region which I'd like to evaluate too. My upper back and right shoulder burns sometimes. My right forearm feels pretty numb and weak. I can still grip and all; just feels it's being challenged. I sometimes feel that both my forearms and biceps have gotten smaller yet more rigid, but can't really tell if there's a marked difference v. my left side. Either way, it's causing me some concern and am curious to see whether others have experienced the symptoms too? Please let me know.

 

[affected]

Hi
There is a sticky at the top of the forum you should read - it says read before posting.

You report lots of stuff that has nothing to do with ALS, so it's highly unlikely.

Talk through your test results with your doctor as this is what they are for and are the ones examining you.

We only know ALS here, we are not doctors so we can't really talk about all the whatever other things this could be.

Best of luck with sorting out what is happening, but truly ALS just doesn't present this way.

 

[starente15]

I agree with Tillie. I've been in multiple car accidents and have a lot of back and neck issues. I get burning nerve pain all the time in my shoulders, arms and legs. My legs are restless, tired and heavy all the time. I don't have ALS.

 

[caliguy117]

As an update, I did my EMG/NCS and both came back normal. I will keep an eye on my symptoms and see if anything gets worse. For now, I will assume it's possibly anxiety-related and will get that treated accordingly.

I want to thank you all for reading and particularly starente15 and affected for replying. ALS is still a part of me as my mom has it and I will do my best to support her throughout this process.

On that note, does anyone have links/updates on the research being conducted for ALS? My background is in physiology and I sell lab supplies, so I'd like to keep up and possibly see if I can help with the progress we are making to find a cure. Thank you.

 

[affected]

Terrific news that you are cleared of ALS

Your mum having it does not give you any higher chance of getting it than I have (my husband had it).

There is a forum section here on research and trials, you can trawl through there for lots of info.

 

[caliguy117]

Hello all. I hope you find this message well.

Some of symptoms have come and gone fortunately. But I still notice some symptoms, such as stiffness in my right hand and foot. In comparison to the left, my feet and hands can contract and move the same, but there's extra difficulty in order to do. I know there could be a number of causes, so I'll keep an eye on it.

My chief complaint, however, is my neck. The numbness hasn't gone away in around my lower jaw and neck area. I've been getting more excess mucus, difficulty breathing (mainly at night), difficulty swallowing (more so that I have to try harder to swallow), harder to move the neck around, more effort required to talk, and some pain in my upper back that may be related to it. When I look at my neck, I feel that the tendons/muscles (not sure what to call it) are a little more prominent than before and on one side (my right side) there appears to be an extra one that makes the space between my neck area and clavicle indented. When I tried swallowing in the mirror, I notice that the side with this indent didn't "swallow" like the other side which makes it look like I'm only using one side to swallow.

I had an EMG/NCV done on my right limbs (arm, leg) and left leg. Would this still be a proper way to detect any abnormalities in my neck area?

Has anyone with neck/bulbar issues had the same issues? I know I don't have clinical weakness, but the symptoms and possible atrophy in the area concerns me. Thank you for your consideration.

 

[affected]

Still no ALS mate.

My husband was bulbar onset and it could not have been more different to what you describe.

Your EMG was done at the right time and in the right places, you are clear of ALS but not your anxiety - please address that with your doctor.

 

[caliguy117]

Thanks affected. And I understand I should get some of anxiety addressed - in the process of doing so.

I did see my GP who said my neck looked normal to him. My concern though is that I feel my neck muscles are sticking out more based on old pictures of me. Also, I'm having a harder time swallowing, getting more mucus for some reason, at times some difficulty breathing, and have to put in more effort to talk. I know my voice hasn't dropped or slurred (or at least no one says it has), but has anyone who experienced/seen bulbar had this type of progression first before perhaps speech began to slur?

These symptoms in addition to the other body wide stuff is what keeps me alert about this. Would appreciate any responses.

 

[affected]

No, no one with bulbar onset describes what you do.

Please understand our members are usually paralysed and using their eyes to type.

They are breathing with help of machines and just don't have the energy and time it would take to respond. I've got enough experience with my own husband and the hundreds of PALS I've had direct contact with to tell you that you are not presenting with bulbar ALS, not even a little bit.

That's great news!