Question ALS symptoms

[akir1013]

Hello,

In April I started to have major low back pain. Though pt, mris, and ruematologists I was diagnosed with AS.

Then came October. I started feeling weak in my arms and legs. I was referred to Ortho. He MRI my neck because my neck has lots of tightness and pain. While in that appointment he said I was hyperreflexive and bi lateral Hoffman's and five beats of clonus. MRI came back completely clean on the neck.

Since then I have twitching in my left eye like the muscle next to the eye.

I have pain as though I worked out even when I didn't in my triceps area both arms. My heart rate which never was fast before is now resting around 100. This was tested no abnormal results.

My thumbs and pinky fingers twitch especially on the right hand. And especially at night my calves get really tight. No cramping. Legs feel like I'm going to fall over walking up the stairs.

I currently can do all the tasks that I used to. I play basketball with my daughter still. I stumbled on this site a bunchnd read the introduction posts.

Can this be the start of ALS symptoms? It was confusing in the post when it said weakness is failure. I don't have failure. But i could easily see that happening soon. Does everyone with ALS progress over time or really that you wake up and the arm doesn't work with no advance feeling warning?

Thanks!

 

[lgelb]

Are you being treated with meds for AS? If there is any question about that dx, of course, a second opinion is always advised, maybe at MCW if you haven't been there.

It seems rather far-fetched that you would have both ALS and AS onset at the same time, essentially, and features like new onset tachycardia don't fit at all, except to the extent that you have untreated pain, which is why I asked about what's being done for the AS.

It is possible that some other inflammatory state is responsible, so that is a reason to seek a second opinion. But I don't think you have ALS.

Where was the hyperreflexia and clonus? It would seem if the orthopod was concerned, they would have referred you to a neuro.

 

[akir1013]

Thanks

Clonus was in my ankles I think.
Hyperreflexive was all over. Both knees and elbows

 

[Nikki J]

How many beats of clonus? Generalized hyperreflexia and mild clonus are not the way als starts and common when you are worried and or your system is in overdrive

 

[akir1013]

he is hyperreflexic, being 3/4 at the biceps and triceps level. He has Hoffmann's reflex in the upper extremities bilaterally. He also has 3/4 reflexes at the patellar and Achilles level. He has 5 beats of clonus at the ankle level bilaterally

This is what Ortho said. I had pain in my neck. So he sent me for an MRI. MRI was completed and clear.

Since then both of my hands have been shaking quite a bit when I try to use them. Especially when I wake up the fingers feel locked and frozen to try to open them. Hard to hold the phone and type this message. Squeezing the blankets to move them especially in the morning feels like hands are shaking and harder to do them it should be. At the time of the appt these hand shaking symptoms were not yet present. Thanks for any advice.

Any thoughts on the doctor's notes?

 

[akir1013]

Hi there any thoughts on the above?

My triceps are shaking with weakness as well when I try to lift just about anything. Calves are burning and thumbs fassilate when gripping items.

 

[Nikki J]

The symmetric findings don’t sound like ALS and all can be normal findings. Even the clonus as 5 beats or less is a normal variant

Whatever this is the multiple areas you find symptoms in don’t sound like the start of ALS. Continue to work with your doctor

 

[lgelb]

Apart from any spinal issues, this sounds systemic to me. I would start back with a good internist and reconsider nutrition and sleep. You could also ask about screening for RLS and track your sleep with a wearable to make sure your sleep architecture is OK (deep and REM sleep).

 

[akir1013]

Thanks for this advice. I am seeing primary care next week! Since these posts, my right thumb continues to feel week and right hand especially shakes and struggles after using phone for any length of time. Twitching in calf left foot

Added symptom...my tongue feels swollen scalloped on the sides and I'm having to clear my throat very often it's like it's clogged up.

It would be abnormal to present symptoms of ALS in my hand and have the mouth and throat involved at this point?

 

[Bestfriends14]

You've not reported any ALS symptoms at all, regardless of where you report they are. I hope this puts your mind at ease.

 

[akir1013]

Thanks for this!

I noticed more things lately.
It seems like all my fingers on my right hand are losing muscle visibly when I flex them. It looks as though it's hanging skin around the bottoms of the fingers

Is this a possible symptom?

 

[Bestfriends14]

You've not reported any ALS symptoms at all, regardless of where you report they are. I hope this puts your mind at ease.

 

[akir1013]

Thanks for all your help. I am now waiting for a neurologist appt.
In the meantime, the stiffness and weakness has pretty much showed up in the right hand thumb.
Hands shake regularly but right especially feels weak.

 

[akir1013]

A question
I work out now and I don't get sore anymore. Is that a symptom? Like I stop feeling muscle aches after tons of pushups and lifts

 

[KimT]

The fact that you can do tons of pushups and lifts tells me you don't have ALS.

Please work with your internist and any specialist to whom you are sent.

You've had many people, familiar with ALS, tell you it doesn't present like what you're describing.

Feel free to report back AFTER you've seen your doctors and have a diagnosis.

In the meantime, you might want to get counseling so you will have someone to talk with.