diagnosed with possible als on tues

[davel]

Not sure if this is the thread I should post to but I received this news on tues from a neurologist and as hard as i'm trying the anguish is starting to be overwhelming.

First, i'm a medical records coder so I know some base ideas of als already but I am in no way a physician. I hurt myself 6 months ago at crossfit and thought I just had an arm injury. After a couple months of PT to strength my shoulder I was still having issues at my elbow and started to get concerned. I have loss of grip strength and some muscle wasting going on between thumb and finger and ulnar nerve entrapment was brought up. I def have the entrapment after having my first emg and its def at the elbow but other things were not totally meshing up either. Now I have twitching above the elbow and went to have another emg before having surgery for the ulnar nerve. Based off the new emg and ncv and the twitching I have been given a possible als diagnosed and being referred to the als/motor neuron disease clinic.

two questions: should I still go through with the ulnar nerve transposition surgery, is it worth it? and second, should I be getting all my affairs in order now before anything else happens? I'm trying to keep positive but it is really hard so far so i've come to the internet for help

 

[Nikki J]

Personally I would hold off on surgery until there is more clarity. There are so many stories of surgeries to try tofix what ultimately turned out to be ALS symptoms. It may be you have both but I would wait for the neuromuscular doctor to advise you. Are you going either to the UMass ALS clinic or to MGH? Both are great
I suppose we all should have our affairs in order as anything could happen. It becomes more urgent if it is ALS. Are there things you would set up differently if it is? it can't hurt to at least start thinking things through

 

[davel]

It is the MGH clinic Nikki.....I am schedule to go there before the surgery as it is so I guess I can always cancel if need be. And correct me if i'm wrong though, ALS wouldn't affect the sensory neurons that I have with pain at elbow and tingling in pinkie and half ring finger?

 

[Nikki J]

true you did not mention those initially but since your appointment is before the surgery you can indeed cancel if so advised. Whoever you see at Mgh in the ALS clinic they are all great I think. I go there too. Get copies of everything to bring with you even though it should also be sent ahead of time. You want to be sure they have everything when you are there. If you have had any MRIs make sure they get the discs not just the report

 

[davel]

I do have all of that so I will remember to bring thanks.....quick question: have any tips on how to get better sleep when twitching is out of control?

 

[Atsugi]

Dave, you definitely want more clarity, as Nikki said, before doing any surgery. I'd get a second opinion about the ALS, first.

You're right that ALS wouldn't cause sensory problems, tingling or pain. Although you mentioned elbow problems, you didn't mention anything that sounded like ALS. What symptoms are you having that would concern the ALS specialist? Do you have a muscle that is paralyzed--limp and useless and unable to contract? ALS destroys the motor nerve in the brain, so the corresponding muscle cannot contract. It doesn't hurt or tingle or even feel weak, it simply doesn't contract.

As regards getting your affairs in order: Prior to getting a definitive diagnosis of ALS, you might want to buy life insurance to the max, if you have family.

 

[davel]

Thanks for the advice both of you, esp on the insurance part....I will get on top of that.

Atsugi......I have hyperreflexia, loss of grip strength in left hand, twitching, and some atrophy in the hand(which I thought was from the ulnar nerve)

 

[lgelb]

Dave, re your twitching/sleep question, would balance K/Mg/Na/Ca in your diet though there is some competition, make sure your bed/pillow are max comfy and your hands are cradled stably (if you toss/turn a lot, latex overlay may help), consider a short-term sleep agent like Ambien if you are short on sleep (which makes the twitching worse, of course), ask your PCP or neuro re tizanidine or baclofen (start low, go slow). And standard sleep hygiene like no screens in/before bed, check temp and noise, exercise early evening, meditate/read before bed, hot bath or shower.

And try a massage. It's all connected. I hope your issue, which seems fairly localized, is something more benign, like the shoulder PT damaged nerves further down. Agree, don't think about surgery until you have more clarity.

 

[davel]

Thank you all for your posts, I am also hoping it is something more benign as well since it is localized to just the left arm and it is not my dominant arm. I've also heard things like Isaac's syndrome can be acquired in associated with peripheral neuropathy which I know for sure I have the ulnar issue.
I've never prayed so much in my life nor felt such dread. If this turns out to be benign, I hope I can come back on here and help quell others fears and to never give up hope. If it is confirmed, I hope I can come here for support. Thanks again everyone

 

[BlueandGold]

Dave,

I hope and pray you do not have to become a full time member here, however this is a great place for support and answers. For what it's worth, I agree with others and would put off the surgery until you get confirmation of MND. I can tell you that I have had the numbness in my pinky and ring fingers as well but that didn't have anything to do with my diagnosis. I believe it was just coincidental. My symptoms started in my left non-domnant hand as well and stayed there for about 7 months before my speech began to become affected. Right now, those are my only two areas affected.

Best wishes to you.

Vince