Just Nervous

[Pittpanthers12]

Hi everyone. Thank you for this blog, it has been really helpful.

I’m an 29 year old male. About a month ago, I started getting twitching all over. Most of the twitching has occurred in my legs. Since then, my legs have been incredibly sore off and on. There are times I feel like I cannot stand my legs hurt so badly. I talked to my doctor about this and he referred me to a neurologist, however, I cannot see them for another month. My doctor did blood work (CBC and the other usual stuff) and everything was normal. He also had me do the stand on your toes, heels, touch your nose and his hand test, etc which I did fine. My reflexes were pretty active though.

I’m just increasingly nervous this could be ALS. My right thigh is also in a lot of pain, which I don’t know if it is from cramping or not.

Anyone have any thoughts? Thank you so much.

 

[ShiftKicker]

Hello-

Please make sure to read here: Read Before Posting

The link contains information about why sensory issues, twitching absent clinical weakness (you can still walk on heels/toes, etc, so not clinically weak) and no clear signs of neurological issues means what's going on with you points elsewhere. ALS has a pretty distinct pattern of symptoms and you are not reporting those.

 

[Pittpanthers12]

Thank you so much for your reply!

I had read thag, but I’m still confused. I guess I don’t understand what weakness means then. Would the cramping/pain not be a sign of weakness? Would weakness simply mean not being able to use that body part?

Also, just a question on the twitching because there seems to be different answers. Would twitching in both legs mainly, and sometimes in other parts of the body, point away from ALS because ALS twitching is localized?

Thank you so much for your help as I navigate this scary time in my life.

 

[Nikki J]

Clinical weakness is detected by a doctor but a proxy is inability to do something. An example. I could not go onto tippytoe of one foot. Neurologist had me try to push against her hand ( step on the gas movement) couldn’t = clinical weakness. I didn’t feel anything it just didn’t work. It feels like it would if only I tried harder. This is a very hard concept if you haven’t experienced it

ALS twitching is the distress call of dying motor neurons. ALS starts in one place and spreads so twitching in multiple places and no weakness does not raise red flags for ALS

 

[Pittpanthers12]

Thank you both so much for your answers. The amount of anxiety I have waiting for an appointment is overwhelming.

If I could ask one more question. I have also had a lot of saliva, like a lot, and some other weird throat things. It is hard to swallow saliva sometimes, and it seems I’m having extra post nasal drip, as well as a dry throat. I am not slurring my words or anything like that. Would this sound like ALS, to have muscle twitches, and then Bulbar ALS soon after that? Does this sound like ALS, Or does Bulbar ALS always start with the slurring of words and not the saliva? Thank you for your time and answer.

 

[Pittpanthers12]

Hi! I’m sorry to ask another question. For the past week now I’ve had difficulties with my thumb. It is not bending correctly or all the way. There are no other fingers having problems. I don’t get to see the neurologist for another week, so I’m just even more stressed. Any thoughts? Does ALS only start by effecting one finger at first? The muscle twitching has calmed down but has not stopped, it is still mainly in my legs but occasionally in my arms or trunk.

 

[lgelb]

It is exceedingly unlikely that ALS would show up as a stiff thumb, especially with the carousel of concerns you describe.

Your appointment is only a week away. Make the most of that week. If you are too stressed to enjoy life, why not help someone less fortunate? There are opportunities to help everywhere you look.

 

[Pittpanthers12]

Hi there! So I saw the neurologist and am not sure what to think. I’m still having the twitching, which has now settled in the left leg and ankle which feels really weak. For example, my legs are incredibly shaking when I’m standing. He saw no signs of clinical weakness and all of my reflexes were normal. He also said if I had ALS he would have noticed spacisitity (I think I spelled that wrong) which he didn’t. He said if the twitching was caused my ALS, one of those would be off by now. Does that sound right? He still is sending me for an EMG which I will not have until mid-June. Just looking for some answers and reassurance possibly. Thanks!

 

[KimT]

Just remember, EMGs test for many things and rule out many things. I don't see ALS but an EMG will rule it out. If your strength and reflexes are normal, even an EMG that isn't totally normal will point your doctors in another direction.

Try to busy yourself. I know it's hard but you need to stay off the Internet and this forum until after your EMG. Enjoy the outdoors or anything else you can find pleasure in.

 

[lgelb]

...and stay vigilant on your hydration, nutrition, and sleep, the foundation for whatever therapies are recommended based on your final diagnosis.

 

[Pittpanthers12]

Hi all!

I had my EMG / nerve study today and the doctor said it was completely normal! While I’m relieved and ready to move on, just checking: with a normal clinical exam and now a normal EMG, would this be enough to definitively rule out ALS if the symptoms I’ve been having have occurred for over two months?

 

[Nikki J]

Yes.

 

[Pittpanthers12]

Hi, sorry to be back, just checking and seeing something.

Beginning last week, i have had horrible breathing difficulties. Never experienced anything like this before. My oxygen is normal, and they scanned my lungs and they were normal. The doctors aren't sure what is happening. Of course, this triggered my fear of Bulbar ALS and breathing problems associated with it. If i received a clear EMG on my limbs two months ago, would this clear me for ALS affecting my throat and lungs?

Thank you so much

 

[Clearwater AL]

Once again we see someone 29 years old completely clear
of ALS clinical/EMG then later come back with Bulbar
concern. Unresolved Health Anxiety again keeps the
questions coming even after.

There really not much more this forum can help you with.

The answers you have need to be directed to your doctors.
Address Health Anxiety… you’re way too young (29) to
be burdened with your scare of ALS.

I hope your doctors get you out this soon and you have
29 more years of a carefree happy life.

PS. Your Bio only has US... earlier replies might have been
more helpful with more than just US. Where - who.
Too late now.

 

[lgelb]

Yes, it does. It's summer, with heat waves and poor air quality in many areas. And you're fearful of ALS, while your lungs and sats appear normal. Allergies, which can appear at any age, may play a role and you can be tested and/or try an OTC nasal steroid absent any contraindications.

As Al says, addressing your fears head-on with counseling or talking with those you trust can pay great dividends.