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chuckstr

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Learn about ALS
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I've read all of the stickies and many threads and am so impressed at the level of knowledge and support. I thank all the answerers for their time and insights. I have a 40% grip strength reduction on the left and clinical weakness 4+/5 in my left bicep on exam, duration 5 weeks (weakness could have been there longer). At outset, I had severe pain in my shoulder and outer arm, and pretty severe pain in my neck as well as tingling in both hands. I've done PT and much of my pain has disappeared but the weakness remains. In addition, I've more recently developed "heaviness" in my legs and arms and fasiculations in my legs. I'm not sure if they are true fasics, they are tiny muscle contractions that don't seem to really ripple. I've seen 2 neuro surgeons and 2 orthopedic spine specialists who have done some neuro exams. My cervical mri supports some of the arm/neck stuff but perhaps doesn't really explain the grip weakness (main problems at c4-c6, moderate on left at c6/7, cord stenosis at c5/6), lumbar mri is mostly benign. I have an ALS specialist Neuro consult in roughly 2 weeks. My questions are :

Do fasics really need to be like worms under skin (rippling) to count as far as ALS goes?

I read in the stickies that you need UMN and LMN signs in order to have ALS..., does stiffness of muscles in the neck, shoulder and legs count as spasticity? (I don't have any others according to exams so far)

What would the timeframe be (in general) for the hand weakness to increase if it were ALS?

Is it worth waiting for the ALS neuro consult (and possible EMG) or should I see my previous general neurologist (who I can probably see more quickly)?

Thanks for everyone's time. Take Care...
 
Sorry you are going through this

To answer the questions
1 i don't think so,my twitching was different than that

2 spasticity is a little different than classic stiff muscles. Your neck issues could explain the neck and shoulders stiffness

3 progression is wildly different among PALS. Can't predict

4 ALS specialist opinions are in my view worth waiting for. Who suggested the ALS evaluation? You or your neuro? What symptoms are you having that your regular neuro has not evaluated? If there is a big change the regular neuro should evaluate you while you wait for the other appt
Good luck
 
Thank you so much for your reply Nikki. I'm so very sorry you have this terrible disease.

I set up the neuro referral when the weakness wasn't getting better and I started with fasics, and leg fatigue. So far fasics only in legs where I don't have clinical weakness. I haven't seen a regular neuro since it seemed like the cspine was causing my problems. I have one I could call that I saw years ago for something else. Or, I could wait for the ALS center neuro. Thanks again for your time.

Chuck
 
> ALS specialist opinions are in my view worth waiting fo

ditto that
 
"Do fasics really need to be like worms under skin (rippling) to count as far as ALS goes?"
No, clinical weakness and atrophy are the “must have” lower motor neuron signs to prove ALS; you can have ALS without fascics. (Per “ABC’s of ALS” by Bay Area ALSA on YouTube) So they are a symptom that might point toward ALS, but not having them does not rule out ALS.

“I read in the stickies that you need UMN and LMN signs in order to have ALS..., does stiffness of muscles in the neck, shoulder and legs count as spasticity? (I don't have any others according to exams so far).”
The most important UMN sign is hyperreflexia and is the must have for ALS. (same source)
And spasticity is more than just tightness. “Overall, a defining feature of spasticity is that the increased resistance to passive stretch is velocity-dependent. Lance (1980) describes it this way: “...a motor disorder, characterised by a velocity-dependent increase in tonic stretch reflexes (muscle tone) with exaggerated tendon jerks, resulting from hyper-excitability of the stretch reflex as one component of the upper motor neurone (UMN) syndrome.” In other words, you need a neuro to determine if you have spasticity, and your neuro did not find any. This would point away from you having ALS, though a lower motor neuron predominant form of MND called PMA is still a possibility.

“What would the timeframe be (in general) for the hand weakness to increase if it were ALS?”
ALS makes its own rules, person by person.

“Is it worth waiting for the ALS neuro consult (and possible EMG) or should I see my previous general neurologist (who I can probably see more quickly)?”
That is a call you’ll have to make, a matter of how worried you are. Your symptoms seem to have started with pain, which is sensory and does not point to ALS. Who put ALS on the table? A Google search or one of the neuro surgeons or your general neurologist? If your general neuro has already referred you to an ALS neuro, what would be the point in seeing him again? An EMG certainly might help locate the weakness problem, but there are hundreds of causes of weakness, so it seems to me to be way too early to indicate that it is ALS. I guess my vote would be to just wait for the EMG. A clean EMG would rule out ALS. A dirty EMG might point toward something specific (e.g; pinched nerve) or it would mean it’s time to start ruling out everything else in the world besides ALS—blood and urine tests to rule out MMN, Lyme, HTLV, vitamin and hormone deficiencies, heavy metal and toxin poisoning, myopathy and so on. And probably an expanded EMG or 2.

Diagnosing ALS is usually a very long, slow, tedious process. Being impatient or anxious won’t help. I’m not a doctor and I haven’t seen you or your records, but I’d relax and wait as I don’t see what’s really pointing at ALS. Good luck and let us know how your next neuro appointment goes.
 
Thank you so much for your reply Dusty. The only things pointing to something other than disk issues are the fasiculations which are in my legs (not the weak part, my arm), some unexplained fatigue in my legs (not sure that would happen in ALS without weakness), and the fact that my grip weakness doesn't match perfectly with my disk pathology. I made my own appt with the ALS center when these issues came to light. Overall, i guess my remaining question is as far as execution of the emg (if i need one), would an ALS center do it better than a neurologist with special emg training? It is hard to wait and i just want to make sure things happen as quickly as they can and still be diagnostic. Thanks again for your time.
 
I think you may be splitting hairs between an ALS center and a neuro with special EMG training. Going to an ALS center does not guarantee that their best ALS neuro is going to do the EMG. And, of course, there's no indication yet that it is ALS. I would accept an EMG from either one.
Yes, waiting is tough... but 2 weeks is really not that long. Although, if you can get one faster, faster can be easier you.

Remember to get a full copy of the EMG, not just the summary. You want all the charts and tables you can get. Good luck!
 
Thank you Chuck for reading the stickies first and then asking intelligent questions. I will pray for you and hope you find answers soon. Best of luck to you. Kim
 
Thank you Kim and Dusty and everyone else for being here. Dusty thanks for the tips and especially the tip to get all of the emg things. I've got an appointment with my spine surgeon to discuss referral for an emg with the specialist neuro tomorrow. I'll let everyone know how it goes when I know more. Thanks again and take care.
 
And get copies of all MRIs, etc. from the spine surgeon as any neuro on referral will want to see these, too. Good luck...
 
Thanks I do have copies of the MRI and treatment notes from the spine guy. I was able to get an appointment with a reputable neurologist today and we'll see what he says. One follow-up question - I assumed that if you had fasiculations in your legs (and other places that aren't your arms) but weakness in one arm, that would argue against ALS. As I understood it the fasics are due to an attempt at reenervation of muscle. I understand that there could be sub-clinical weakness detectable on EMG in the legs, but the fact that the fasics are not in my weak arm is a good sign, isn't it? Thank you again for all the great help and advice...
 
There are hundreds of causes of fasciculations, most of which are benign which is what makes it such a poor diagnostic symptom. Fascics can be due to reenervation, but don't have to be.

I think the best things (pointing away from ALS) are that your symptoms started with pain and that you only have clinical weakness in a limb that has been affected by cervical problems. I understand that C4-C6 and the hand are not a perfect fit, but at this point I'd guess it's a more likely cause of weakness than a very, very rare disease like ALS. The heaviness in your legs is not clinical yet.

You understand that at this point, we're just guessing. You really need the EMG and a clinical exam by a neuro (to look for LMN and especially UMN signs). My big advice at this point would be relax. Your symptoms don't make a strong case for ALS or MND.
 
Sounds like my situation.... Parsonage turner.... Pain with weakness and in my case some atrophy... But when I read cramps and fasics were part of ALS, guess what?!

I GOT FASICS AND CRAMPS/MUSCLE ACHES ALL OVER!

They've mostly subsided and I'm still scared at times , but with pain especially, sounds like PTS or radiculopathy... But I'm not a doc, just some fool with a screwed up body.
 
I went to the first neuro today and the good news is that as you nice folks here have suggested, he has very low suspicion for MND. He is going to do and EMG/NCV "to be safe" and to check for more information related to which nerves might potentially be causing symptoms which would potentially infuse surgery decisions for my spine if it comes to that.

He pointed out that the weakness is actually not in my hand but in my wrist extensor which could result from a c6 radiculopathy and cause grip strength weakness. He also mentioned, as Dusty did, that fasiculations are not diagnostic of anything. Also, in his practice, he hasn't seen isolated weakness in a separate limb from ones with fasiculations on presentation. In addition he pointed out that at my age, the chance of ALS is roughly 1/1000000. That's all pretty reassuring. At any rate, I have an EMG scheduled for May 13, as well as my als center neuro appt May 8. Hopefully those go as well.

The neuro also mentioned something interesting which is that he often sees fasiculations before clinical weakness and occasionally if fasics are of short duration has seen false negative EMGs. After a period of two weeks he has never seen a false negative EMG with fasics.

Energy: Lots of similarities in my situation with PTS. I had "trauma" in the shoulder before pain. I'm not 100% sure when the weakness presented. I noticed it about a week into the pain but as the NIH site says, I was concentrating on the pain before that. Definitely possible, thanks for the tip.

And thanks to everyone on this forum who has taken their valuable time to respond to me. Take Care, Chuck
 
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