Sorry to be back- new situation and questions

[twitchy23]

Hi, I am sorry to be back. My other threads are closed. I am having trouble with new questions and I think expierenced people are the best to ask.

Symptoms:
- Since Dec: Progressing left arm fatigue/heaviness/clumsiness with heavy twitching. It's getting harder to pick up and control things like my laptop.
- Over the whole last year: Right hand: thumb is shrinking. No clear muscle atrophy, but doctors do acknowledge some areas sinking in on the back side of my hand, between thumb and index finger, with the anatomical snuff box getting deeper. No change or dips in the actual muscle, but I do have a reduced grip, acknowledged by my neuro who ordered a brain MRI to be sure.
- Since Dec: neck pain and pain going in my left arm, comes and goes
- Since Dec: very stiff neck, comes and goes

I had a MRI of my cervical spine. 2 herniations at C5/6 and C6/7, though it mentions no compression or myelopathy. My neuro does not think the herniations are causing my problems, but my orthopedic doctor does think so. I do not have numbness or tingling, just pain, twitching, weakness/fatigue.

Within the last 2 months, I had clean EMGs of my right hand Thenar (palm side), upper and lower left arm. But I think it's my tricep that's weakening (no EMG in tricep). Also, I had clean MEP and SEP tests. Clinicals and reflexes are normal. Just last week at the neuro, he did a nerve conduction test of my right arm/hand, normal.

What are your opinions on the clean EMGs and nerve test in relation to my current situation? Would it be possible that the EMGs missed something (wrong muscle?) or were done too soon? I believe nerve tests are normal in ALS.

Also, I believe stiffness of muscles is a symptom of ALS, so could it be that the stiff neck/shoulder where I have the pain fall into this symptom or is cramping/stiffness in ALS more like all over the body?

I know pain is not usually an early symptom, but I have read stories here that it was present in the beginning.

Lastly, do you have opinions on ALS starting in a right hand, leaving it pretty functional (minimal changes) then moving to left shoulder affecting entire left arm?

Ultimate lastly: thank you for reading and responding, from the bottom of my heart. I pray for everyone on here, everyday and I donate to ALS causes regularly.

 

[ECpara]

In my husband's case, his EMG was done on his limbs, but it was his tongue that was failing. And it is my understanding that EMGs can pick up abnormalities long before diagnosis, not the other way around. Your EMG sounds like it has cleared you of ALS. My husband never had any nerve tests. Stiffness and cramping for my husband came long after his diagnosis, not at onset, and only affecting the muscles that are experiencing atrophy.. As far as ALS affecting a hand then jumping to the opposite arm, not likely. Pain? He's never had pain other than the cramps I mentioned. I doubt you have ALS. Good luck to you.

 

[affected]

Twitchy honey your panic overtaketh you again.

If you won't believe neurologists and EMG's then we can't do anything else.

Our official opinion is to trust the results of the EMG and celebrate.

You officially don't have ALS (still).

 

[twitchy23]

Thank you both. Tillie, you are so right. I appreciate your honesty! I said before I would only be back if tests or doctors were showing/mentioning MND and I need to stick to that. Would it be OK for me to delete my account to help me from coming back just out of panic? And then only if or when I have to return as I mentioned, I will create a new account. ? I can mention my old account name then. Just making sure that's ok before I do it...

 

[Nikki J]

Hi there. I do not think you can delete your account. I can ban you which would make you unable to post. I do not think you will have to come back but if you did there is a chance that using the same IP address you would not be allowed as multiple accounts are forbidden. Let me know what you decide. Can you not block this site on your computer? Even if I ban you you can still lurk

 

[twitchy23]

Hi, I am back and now I have a reason to be and really need advice. At a new neurologist last week, he found clinical weakness in my left arm, atrophy in my shoulder, abnormal EMG of my deltoid (fasciculations, positive waves, increased action potentials, spontaneous activity).

With my history that I had lots of arm pain, followed by this weakness, he diagnosed me with amyotrophic shoulder with diff. diagnosis of plexus neuritis. He told me this was not ALS, but only because of 2 things: I had/have pain and it's my shoulder that is weak, saying that ALS would not start there. But I know from reading stories, both can happen.

2 months ago, a professor neurologist EMGed this same muscle and it was clean. I have weakness in my left arm for sure. Everything I pick up is heavy and clumsy.

He did not find weakness anywhere else. He graded it 4/5 in strength. I know that's a little, but things start at some point.

I am on cortisone therapy for the pain (which is mainly in my neck but does go to my arm at times).

I have twitching that comes and goes in my left arm. It's not constant, from what I can feel.

I am physiotherapy to try to strengthen my arm, but they said it will be a slow process. I am so worried that the weakness will progress...

I am having sensations, like tingling, crawling feelings, also like I rubbed my arm with icy/hot cream (where it feels warm and cold at the same time). I also get my heart beat in my arm really loud.

I am going to see him again and the professor neuro both next week, but until then, I wanted to ask if any of this is concerning or if you heard of ALS presenting this way. I looked up ALS and sensory and found it can happen, but rare.

PS, I had a MRI of my neck 1 month ago. I have 2 herniations but the report says it's not compressing anything. Some of my doctors think it could be the cause, but some, like this new neuro says it is not enough to cause what is happening in my arm.

 

[Atsugi]

You need to post in a forum that deals with neuritis, not ALS.
If you don't believe your doctor, and you don't believe us, then why do you keep coming back?
This is neither a social site, nor a general health site.

 

[affected]

diagnosis of plexus neuritis. He told me this was not ALS... snip ...

I am on cortisone therapy for the pain ... snip ...

I am physiotherapy to try to strengthen my arm ... snip ...

I am having sensations, like tingling, crawling feelings ...

Shoulda just banned him Nikki ...

Please tell them next week of your unreasonable anxiety so that can be treated too - please.

 

[Nikki J]

You have your diagnosis. You need to be patient as it takes a long time to recover from this. Really.

 

[twitchy23]

I am sorry to bother anyone here, not my intention. It is also not my intent to use this as a health or anxiety board. I think many posts on here by other members are also full of anxiety, and when someone is faced with almost the same clinical and diagnostic criteria as ALS at their neuro, things do get kicked up a notch. The reason I asked is because I know and have read how PALS on here said they had pain and sensory issues. If you google "als sensory" all sorts of articles come up indicating ALS could be a mutlitdisciplanary nervous disorder not just affecting motor nerves. I had clean EMG reports before (some PALS do have clean EMGs in the start) and was diagnosed with psychosomatic syndromes, and then one new neurologist (who specializes in geriatric care, not ALS) tells me I have definite damage. He tells me "but because of pain and sensory, I am ruling ALS out" - of course I am distrusting here. I wanted to reach out to ask for those who have had pain and sensory issues, what kind were they, how long did they last, how intense were they, etc. but I really don't think I would get far. Or if not that, to help me determine if I should go to an ALS specialist, since plexus neuritis is a DD of ALS. That was my intent of my post. I will keep marching on and follow-up solely with my neurologists. If you can ban my account, then yes, please do. I do not want to upset anyone. I appreciate everything and keep you all in my prayers always!