ALS - Starting In the Hand / Forearm?

This is such a great forum. I truly respect the honesty and support that you all provide. Unfortunately, I need to tap into the group’s feedback as I am honestly terrified at this point and of course my initial Neurologist appointment is not for another 5 weeks. A little background, the past three years have been high stress, poor nutrition, and minimal exercise due to business travel, school, and helping raise an 11 year old. I do a LOT of typing for work, which includes a lot of sitting. About 3 months ago, I started having a strong burning sensation in the palm of both hands and intermittent numbness in all finger tips. (Worse in the left hand.) Several weeks later, started having strange sensation in the sole of left foot; numbness, burning, cramping. Dr. Google indicated neuropathy and MS as possibilities, and of course ALS popped up here and there. Went to my Primary Doc and she sent me for an MRI of brain and cervical spine. No lesions and no major issues with the spine for a 40-year old. She then referred me to a Neurologist. While waiting the 8 weeks for the Neuro appointment, I am guilty of spending more time on the internet playing doctor, but my symptoms seem to have shifted as well. I am having muscle pain and cramps in my left arm (bicep and forearm) and pain in my left hand (thumb joint and wrist). In the morning, I feel the best with minimal symptoms, but as the day progresses the symptoms get worse, especially with use. (The amount of good time in the morning is getting less by the week.) I have found some articles on the internet by Jillita Horton that describe some of the “official” ALS strength tests that Neurologists perform and of course put my self through the battery of them. According to my wife and myself, I can “pass” the tests, but the “grip” and “pinch grip” tests hurt afterwards in my left hand. I have the strength to pass a 5-second test, hold a glass long enough to take a drink, etc. However, if you asked me to hold something in a pinch grip for a much longer, my hand/thumb would hurt and fatigue quickly. No signs of defined atrophy, but have skinny arms to start with. Then, two days ago, started to get some minor visible twitching down left forearm and in left thumb. That is when rationality completely left the building. I don’t notice the burning sensations as much now as my focus in on my left arm/hand. The left hand/thumb still does what I “tell” them to do, but it feels cramped and stiff and throbs.

1) I welcome general thoughts, comments, questions.
2) How likely is it for ALS to present in this fashion? Would the “issues” be more defined by now in my left hand?
3) If I did have ALS starting in the thumb/hand/forearm, how would it affect my typing? (Right now, it is just my left thumb with cramping in the wrist and forearm.)
4) My Primary prescribed 10mg Nortriptyline for the pain and said that it won’t interfere with the Neuro evaluation/exam/tests. My fear is I won’t be able to articulate my symptoms to the Neuro if I start taking this. Any experience on this?
5) Throughout this ordeal I have attempted to live a healthier lifestyle and lost 14 lbs in the past 4 months through calorie restriction. My hope is part of this is my body attempting to adjust to a new weight, some vitamin deficiencies, loss of muscle tone, etc. Could this be a major factor?

Thanks for any insight that can be provided!

Hello Watsohio,

Sorry to hear you are having these troubling symptoms. I'll try to answer your questions:
2) In my opinion (as a patient, not a do ct or or med ical pro fess ion al), it is highly unlikely this is ALS.
3) I've had ALS sym pto ms over 2 years that started in my right hand and just now having typing issues... so that's not really a defining factor.
4) Your GP is right, this will not int erf ere with any tes ts.
5) Good stuff! Keep it up! Has no bearing on the eventual di ag no sis, other than you are healthier than you were before.

The mind is truly an enigma... and Do ct or Go og le is its worst enemy. When you know to much, and are looking for things to happen, they will happen. Heck, it happens to us folks with gen uine ALS sometimes... you think every tiny thing is due to the ALS and 9 times out of 10 it's not. A cough is just a cough. A twi tch ing eyelid is just a twi tch ing eyelid that everyone gets from time to time. You yourself opened your post with a good description of your level of stre ss... that right there can cause all of those sym pto ms and more! The pain and nu mbn ess you first experienced are probably your only true sym pt oms, and those certainly do not point to ALS AT ALL.

So, try to releax... go to your next neuro app oint ment. Have all the reco mmen ded tes ts and tre atm ents. Give it a really good try and see if it all doesn't go away. If not, and you are not satisfied with this neuro, see another. You are your own best advocate. But really... I wouldn't worry at all about ALS... seems extremely unlikely in your case.

Good luck and let us know how it turns out!

You are doing good adopting a healthier lifestyle. Stress impacts the body in deceptive ways. Chill out and wait for the neurologist appt. I would be surprised if this turned out to be ALS so rest easy until the Dr. tells you it is. Try to stay in the moment and not look to far ahead and please ignore Dr. Google. Sending virtual hugs. Jamiem

if it's any comfort, the most likely cause of your issues is a trapped ulnar nerve. Or carpal tunnel syndrome. An NCV will tell you a lot.

Thank you all for your insight and reassurances. The symptoms have been so strange and doubt and fear eventually start to win the day. Regardless of the outcome, the past couple of months have humbled me and taught me a lot more compassion for the challenges we all face. My thoughts and prayers are with you all.

Glupavomomiche,

You mentioned ALS symptoms in your right hand. If I can ask one final question of you, I am having difficutly reconciling the pain versus cramp issue as it relates to ALS. From reading your and other posts, I understand neurological pain is not usually a primary symptom with ALS. I would say in my hand, it has mostly been neuro type pain, but it has transformed into muscle cramping more and more recently. (I guess one could say there is a fine line where muscle cramping crosses over into being pain, and/or vice versa.) Would you be open to sharing your experience and symptoms in this regard, if any, as it relates to your hand?

Regardless, thank you all for your input. (My Neuro appt. just got moved up to two weeks away, so there is some relief in the dreaded waiting game.)

I don't usually bother answering anyone on this particular part of the forum with any personal info or details, but since you asked so nicely and you're from Ohio (I graduated from the University of Toledo... Go Rockets!)... sure, no problem.

Maybe it'll all make more sense if I just explain the progression of what happened to my right hand and arm over the last couple of years. BTW, yes, pain in ALS is secondary... that is, symptoms (cramps, spasticity) caused by ALS lead to other problems that cause pain. My hand did not have any pain at all in the beginning.

It started out just being clumsy. Most people would not have noticed the start the way I did, but I'm a pianist, and any little change in motor function is highly noticable! I just wasn't as nimble fingered as I had always been, which made no sense to me since I played for about 8 hours a day... at work as a music teacher, and then at home for a couple of hours of practice for my own pleasure. I really thought it was coming from bad posture... I sat on a tall stool at work to see the children over the piano, and that had my wrists so high in the air I thought maybe it was some kind of problem related to that. Then the stiffness started. No amount of stretching or finger exercises got rid of it. I have always practiced scales and exercises daily with a metronome (steady beat has always been my nemesis unless I stay on top of it) and I noticed I simply could not keep up with my usual metronome settings. Over a period of several months, the numbers just got slower and slower no matter what I tried, and absolutely nothing got rid of the stiffness, which gradually moved over my entire arm. Then the weakness really started kicking in... dropped glasses full of water, couldn't play get my arm up to play the flute (which was obviously going downhill anyway since my fingers were so spazzed out), etc. It was over a year after symptoms started that my fingers started to curl and I did nothing about it. I ended up developing some nasty contractures. THAT is where the pain started. Even though I continued to play piano and thought I was keeping my fingers moving, they really weren't getting stretched properly and I was just playing with them turned under and didn't even realize it since I never look at my hands when I play. The spasticity just continued to get worse, the contractures got worse, and the pain got worse. I went to OT and PT for about 3 months and got a resting hand splint, and that has helped some, but the damage is done. The joints just didn't get moved enough, and now they really can't, and that leads to pain. I do not notice any cramping in my hands whatsoever. I have cramping elsewhere in large muscle groups and know what that feels like, so I think it's safe to say my hands don't cramp. Cramps are brief and excruciating... like thousands of needles jabbing a muscle. Stretching relieves this to some degree, but it's odd movements that can set one off anywhere at any time. There are not pain meds for that kind of pain... this requires a muscle relaxer that keeps the muscle relaxed and doesn't let it bunch up like that. I take a truckload of them at nighttime so that I don't get them every time I move in my sleep. Spasticity itself is not painful, but the constant pulling of the muscles that are always "on" causes a lot of joint pain, and that is the kind of pain I tend to have.

Honestly, the , burning sensations, numbness, fatigue, and pain you describe are not related to ALS in any form or fashion. Muscles fatigue during the day and with repetition of work, which is normal for every human being on the planet at varying rates, and PALS do experience that as well. With ALS, you just simply can't even do it to begin with. Notme is absolutely correct... the symptoms you are describing and more consistent with some kind of nerve entrapment or neuropathy of some sort. Be sure the neuro orders (or even performs his/herself) the NCV/EMG. That will probably be the most enlightening test you have since your head and c-spine MRIs were clean. I will be shocked and fall out on the floor if it turns out that you have ALS.

Anyways, try to chill out and don't look up any more stuff on the w e b. Take care and keep us posted on what happens.

Sarah and WatsOhio! I am from Ohio as well, born and raised in Marietta! I am a huge Buckeye fan. I am confused with my ALS symptoms? I have no cramping...atrophy in RFA before hand atrophy which started back in January...and just now getting a weak right thumb? I am right handed by the way. I think I am a little backwards? The muscle fatigue in my forearms is not fun, especially when I am trying to cross stitch.

Cindy

Cindy, from all I've read and heard, no two people experience ALS progression the same way. Typically, in most people, if it starts in an arm or leg, it'll go to the arm or leg on the other side before it goes anywhere else. And in bulbar onset, it tends to move downward. I'm on the more unusual side... my progression is considered "cortical hemiparetic"... it went all over the right side in all four regions before moving the left. The neuro that dia ag no sed me knew what it was from the literature, but she had never actually seen it before in all her years of practice until me.

Thanks Sarah....it definitely progresses differently in everybody huh?

Sarah,

Thank you for sharing this information on the progression of your symptoms. It was very helpful and gave me a better understanding how and when pain became part of it. I also appreciate your advice regarding having the Neuro conduct the NCG/EMG tests. I will follow it. (I actually got to see the Ohio State - Toledo Rockets game a couple of years ago in-person when they played.) Have a great weekend and again, thank you for sharing such personal information in this setting.

Cindy,

It is nice to talk to other Buckeyes. While I graduated from Ohio State, my family is originally from a farm in Southeast Ohio, near Woodsfield. Marietta is about 20 miles away on a backroad.

Been to Woodsfield many a times in High School due to games. I graduated from Fort Frye High School. Woodsfield is a nice place but unfortunately...have not been back to Ohio for many years.

You've got some good answers here, and my left foot started with weakness that was barely noticeable, the "charlie horse" type of pain came later on. I know that carpal tunnel is so common and is quite painful, so unless you have "real" vs "perceived" weakness, I also don't think you have ALS to worry about.

Regarding the twitching: after my diagnosis, I did a lot of reading (obviously as we all do!) and I found out that higher doses of vit D were being used in MS patients and seemed to alleviate twitching in many cases. I started off with high doses of vit D and B12, tapered off the amounts but still take the D daily, and the B12 a couple times a week. B12 can be tested "normal" in your blood work, and still not be utilized properly in your body, so ask you doc to see if that test was run. Good luck and stay positive, attitude definitely counts!