I'm 34 and I'm twitching from head to toe (including the tongue)

[RMuoio]

I'm 34 years old. I'm an active gym-goer, and I don't have any known medical conditions. That said...

Nearly two months ago, I began experiencing twitching in my right index finger and thumb. Roughly one week from the initial onset, the twitching spread to the fingers of my left hand. About three weeks after initial onset, I had twitching all over my body, from head to toe: lips, cheeks, back, abs, chest, should, biceps, triceps, shoulders, forearms, hands, quads, hams, calves, toes, etc. At four weeks in, my tongue began to twitch, but I believe it mostly twitches when I'm about to fall asleep, like some sort of hypnic jerk. (I was and am experience more frequent hypnic jerks of all body parts now.) At five weeks in, I began to experience a sort of weakness in my left calf: when I use it, it feels the burning sensation generally accompanying exertion. Today, my calf felt quite weak. I performed calf raises in the gym, and my left calf could not keep up with my right calf.

I read the pinned post that new users are supposed to read, so I realize my weakness is not (yet) clinical weakness, but I'm posting because of the intense anxiety I have (which partly stems from not sleeping well due to twitching — in fact, I dread going to bed now). The symptoms are not going away, and the medical process is very slow. I waited six weeks just to have an appointment with my primary care doctor. It's been over a week since that appointment, and none of the tests or referrals he said he'd order/prepare have been done, so I'm literally just helplessly waiting.

Prior to meeting with my primary doc, I did meet with a friend-of-a-friend neurologist who performed basic reflex tests on me. (I think that's what they're called.) She concluded I probably don't have ALS, but she said I need an MRI (of my brain and neck) and an EMG-NCS. Of course, since she was not in my insurance network, I'm having to wait on my slow primary care doctor to order things, which is absolute frustrating.

I don't know what exactly I'm asking in this post, but I welcome any thoughts. I'm anxious. I just had my first child about 11 weeks ago, and I don't want to leave her fatherless.

 

[lgelb]

Congrats on the new arrival.

Unless you are in a gatekeeper model plan, you should not need your PCP to see specialists or have tests. You could also do a neurology consult via telehealth, to get some basic reassurance. That is available in every state.

You could have restless leg syndrome that is affecting your sleep (which, of course, an infant does, too) and therefore your wellbeing overall. You could probably get some hint about that by tracking your sleep with a fitness tracker or smartwatch.
It is also worth making sure that you are well-nourished (pregnancy commonly depletes iron and B vitamins), hydrated, and if the gym is not going well, try working out to some videos that emphasize classical stretch, tai chi, Pilates and the like.

I don't think you have ALS.

 

[RMuoio]

Thanks for the welcome and response, @lgelb . I'm already grateful for these forums. The information present in the sticky posts is very helpful.

Regarding the neurology consult, every neurology place I've called or visited has told me I need a referral from my PCP to even be considered. That said, I will give my insurance a call on Monday and ask them to verify whether I truly need a PCP's referral to see a neurologist, and I will ask them to help me find a neurologist in my network.

To clarify, the general twitching throughout my body is what is keeping me up, particularly the face and tongue twitching. Sometimes I get fairly violent neck-twist twitches as well, which jolt me awake. As for the vitamin deficiencies, I've gotten a few blood tests through my multiple visits to an urgent care facility, and none show anything abnormal, aside from a slightly elevated creatine kinase level. (Also, I'm the husband, so I didn't have the baby .)

Thanks for stating you don't think I have ALS. After reading many other posts, particularly the sticky, I'm leaning toward that conclusion too. I suppose I am anxious due to the rapidly progressing symptoms and the inability to get answers. Moving through the medical system is like moving through molasses.

 

[Nikki J]

There are 2 ways the term referral is used. The first is the insurance related one where the plan you have requires the pcp to send a code to approve a specialist visit. The second though is what you may have encountered , that some specialists want a new patient to have been seen and evaluated by their pcp or another specialist who agree there is a reason for them to see the person.

Unfortunately it seems like waits for appointments are common everywhere. It is reasonable if you don’t hear soon to call or message and politely ask the status ( making sure the orders were transmitted)If you have a patient portal you probably can see the orders entered. Last week would have been a short work week due to the holiday so the emg and mri booking people might be running behind

I don’t think you have ALS either

 

[lgelb]

You can screen yourself for RLS...if the twitches are worse at rest than in movement, that or plain stress or chemical imbalance are strong possibilities. If that is indeed an issue, there are good drugs and better diets.

I'll stand on the B vitamins, iron, and all the rest, though, as guys can be deficient/tight as well Sorry I missed "fatherless" in your first post, but I don't think that's a real worry. Try not to.

 

[RMuoio]

Thanks for the additional replies/suggestions. I had intended to respond a few days ago, but, as you are probably aware, the forum places limits on post frequency.

After 1.5 weeks since my appointment with my PCP, the orders still have not been placed. I visited the doctor's office yesterday to get an update, and they did not have any ideas as to when the orders would be place, which, to me, seems absolutely ridiculous. Though the people at the office are nice and helpful, and the doctor seems like a cool guy, the doctor seems overwhelmed and unable to follow through on his duties to patients, so I will be attempting to switch to another PCP.

Regarding vitamins, my blood test result don't seem to indicate a lack of vitamin B12 (mine was 1461 pg/mL), though the other B vitamins weren't tested for. I don't seem to have been tested for iron, so I'll need to see if I can get tested for that.

As for my current symptoms, the weakness/fatigue in my left calf became an intense soreness that lasted for a few days. It felt as if I had run a marathon on one leg. Yesterday evening, the soreness subsided, but the sensation of weakness/fatigue has now spread to my left hamstring. I continue to experience random bouts of numbness that run down my left leg, and my toes occasionally feel as if they are being placed near a flame.

I've also noticed that the twitching I predominantly had in my lower body, though still present, has shifted to primarily my face. My lips, cheeks, and tongue have been twitching more than they have in the past. The tongue twitch is the scariest one for me.

Another thing I've noticed is: when I sleep on my side, the corresponding ear hurts when I wake up, which did not used to be the case. Maybe this is unrelated, but I'm not sure.

Anyway, my symptoms don't appear to be ALS-like symptoms, and the two of you both agree it doesn't seem like ALS, but I figured I would continue to post my symptoms. If my posts aren't appropriate for this ALS-dedicated forum, please let me know. I want to be respectful to the community here and be in line with the intended purpose of the forum.