Questions about ALS weakness and onset symptoms

[kdootz]

Hello everyone,

First off I just want to say how much I respect all of the people in this forum and how helpful they are to everyone. My thoughts go out to you all and I am praying for all of you and I hope that we can find a way to medically halt ALS in it's tracks. My post may be a bit wordy here, I just want to make sure I get everything correct.

My story starts back in March. I started getting a "burning" sensation for lack of words to describe it, in my upper arm area. The sensations came and went depending on the day sometimes spread all down my arms. I was concerned I'd developed an allergic reaction to my inhaler, however my pulmonologist said it is unlikely. I stopped taking the inhaler, however 2 months ago, as I was walking through the grocercy store, I got intense burning all up one side of my skull, and neck, arms, and face. I went to the emergency room confident I'd had a stroke, but they told me it was a migraine, gave me morphine and sent me home. After a series of "burning scalp/arms" I finally got into see my GP. He was concerned about a Vitamin B12 Deficiency and the possibilities that I had a stroke or MS. All blood work and MRI came back normal. Now 2 months later I have developed what can only be described as a numb feeling from my left forearm, up into my bicep. I have some twitching in my arm, but mostly a burning sensation or tingling, however it is not numb to the touch. 2 weeks ago I noticed a stiffness in that same arm, thought nothing of it, but I woke up the next morning not being able to move it. (I had not slept on it weird or anything)

My GP referred me to a neurologist and mentioned ALS. I of course started looking up symptoms of ALS and started panicking as I don't seem to fit any of the normal criteria and thus that leads me to now. I have an appointment in 5 weeks to see the neuro. My left arm is considerably weaker than my right. And I have a constant feeling of weakness in that shoulder and arm that feels tingly. I can however pick up things, lift, pinch, write, type, and hold glasses with it however it starts shaking and trembling if I do any of these things for longer than a few seconds.

My questions are this:

How did the weakness present itself for all of you, and would it be able to start in the forearm, bicep area?

Secondly, how fast the progression is seems to be different in everyone but would it be that rapid?

I have a hard time believing that I have ALS but it blows my mind that my GP would mention it if he didn't think it a possibility. I am a bit nervous so to speak and I am very anxious to see the neuro. I would appreciate any feed back on the subject just to calm myself down a bit.

Thank you so much again I truly appreciate it

 

[kdootz]

Also I should probably mention, I still get the burning feeling in my scalp every couple of days, however the weakness in my left arm, shoulder is constant.

 

[notme]

The sensations you describe being in both the head, neck and arm sound more like a nerve injury somewhere within the c-spine area. Was an MRI done?

An allergic reaction to your asthma inhaler would NOT cause sensations in only one side of the body. You should not stop a medication like that without consulting with the doc.

Als can start in the proximal areas of limbs, yes--but most commonly starts distally--a hand or a foot, or in the case of bulbar, with the tongue.

Numbness and tingling are sensory-and not caused by ALS at all, as different nerves are affected.

it was irresponsible for your doc to mention ALS based on weakness in an arm with absolutely no testing in my opinion. It's very, very premature at this juncture.

if your doc is willing, though, see if he can do the MRi of the spine to see if there is an issue there at all. Your scalp symptoms with the burning, etc--are not ALS.

It's very easy to try and lump everything under one disorder. Be aware of not doing that. It is possible to sleep on an arm and wake up with it suddenly not working. You wouldn't know if you slept on it wrong--because when we're sleeping, we move.

The weakness ALS causes is persistent and progressive. It's not a 'feeling' it's an actuality. Can't button a button. Can't lift a bottle. Can't snap your fingers. Did the doctor find weakness on his exam?

Try to calm down and let the doctors do their testing. There are a lot of possibilities, so try to let them work. Avoid looking on the web for information, as it's very easy to read into what you read.

The fact that you can still do everything is a good sign. What sent me running to the doc originally was the inability to push the buttons on my car door. It was months later that the atrophy happened-but the weakness wasn't a feeling at all--it was a simple lack of ability to do something I should have been able to do.

By the way--finding your sym pto ms don't match what you've read is a GOOD thing--and not a cause of panic at all. ALS is fast--but not as fast as your issues seem to have developed.

 

[CathyP]

"it was irresponsible for your doc to mention ALS based on weakness in an arm with absolutely no testing in my opinion. It's very, very premature at this juncture."

I agree with Notme 100% on that.

 

[Alyoop]

I would not return to the daft doctor who said you might have ALS. If the doctor thinks that, then I would trust him with NOTHING. He needs to get more training.

As Notme has said, you have no symptoms of ALS, not one, not even close.

Atypical migraines can cause allodynia.....weird sensations in face or scalp, that can be brought on by touching ect. Nerve pinching somewhere can also bring on your symptoms. Investigations of your neck might be warranted.

Change your doctor, and start again maybe.

Please please, get ALS Out of your mind. It's just cruel that you have been shoved unwittingly down that path.

 

[brooksea]

VERY irresponsible of your doc to even hint at ALS! Sounds like you have nerve damage.

 

[kdootz]

Thank you everyone for your responses. I really appreciate them. You can well believe that after my GP told me that and I looked up everything that I assesed my strength in my arms, and legs, and while they feel weak, I believe the heat has played a factor in that. Also, I am extremely aware of any little twitch I get and and I've developed a permanent itch in my throat all of which are due to anxiety I'm sure.

I did get an MRI, but it was only on the brain, no spine. That was clear for MS and stroke damage.

Thank you so much again for the reassurance and informative responses. I will try and calm down and patiently wait for the neuro and perhaps in the mean time see another GP who may be a bit less irresponsible.

Prayers and thoughts to you all.

 

[kdootz]

Oh, and one more question. ALS can start proximally, but if that were the case it would start in the shoulder correct? What is symptomatic of that? Are their any strength tests I can do for that in the meantime? Thank you again.

 

[Tokahfang]

Any nerve damage into your arm can cause weakness, so that wouldn't rule out anything and might get the ALS bug stuck in your head for no reason if you found weakness. If you can do all of your daily activities, I'd leave it alone and wait for your neuro.

 

[kdootz]

Ok, I will do that then. Thank you!

 

[Alyoop]

With your symptoms now and the other sensory symptoms, you need a full spinal MRI. From neck to tail.

No, Ms cannot be cleared by just having a brain MRI. You can have denyelinateing lesions in your spine and have no lesions in your brain. I am surprised that you have not had more thorough testing.

 

[brooksea]

Here is a thread that might shed some light for you:

https://www.alsforums.com/forum/do-i-have-als-als/6656-psws-fibs-question.html

 

[kdootz]

That link was very helpful, thank you! I have a spinal MRI scheduled for next week. And I will try and keep off of Dr. Google for my own good until I see my neurologist.