Another anxiety stricken dad or something more?

[Waterdog1979]

Believe me, I have read all of the different posts about people thinking they have ALS. I notice many just involve fasciculations and various forms of perceived muscle weakness. That is why I have waited so long to post. I didn't want to be another person worrying about nothing, but things just keep getting worse.

I will start from the beginning... In August of last year, I started noticing cramps in my hands when doing things like using a screwdriver. I would also get them in my neck if I held the phone to my head with my shoulder. I didn't think anything was really wrong, but I did notice. In November of last year, I began having major coordination issues with my left hand. I wasn't typing correctly, and I was producing numerous errors and not pushing keys hard enough. Most of my problem was in the ulnar portion of the hand, so I figured it was just ulnar tunnel. As time passed, my whole hand has gotten progressively worse where I can't use my pinkie for typing and am having problems with other fingers. I know this isn't clinical weakness, because I still can use my hand. Both hands now have problems and I often drop things. The muscles in my feet and hands have began tightening/cramping over the last month like I would imagine arthritis would feel. An example of this is when I try to flex a muscle in my arm, the hand feels semi-locked/tight and it is slow to open back up. Between January and February, fasciculations started out of the blue. At first, they were all over, but they have since settled down to three hot spots. One of the hot spots is on my bad hand between my pointer and thumb. The other two are on my feet in the same place symmetrically. I do have others on occasion in other areas, but those three are here to stay it would seem.

Since the initial onset, I have had a myriad of symptoms. I have noticed all the muscles of my body shake almost like they are weaker then they were. I can bend down and my legs will just start to quiver. Again, I know this isn't clinical by any means, but I assume weakness has to start somewhere. I have horrible exercise intolerance that leaves me not working out anymore. If I try to workout, my body is wiped for two weeks, and I never seem to recover completely. My hands tremor along with other parts of my body. My cheeks will shake when smiling, and my mouth tremors when drinking or opening my mouth to eat. I have had some instances of trouble swallowing, but I don't know if that is due to anxiety or a real symptom.

I did see a neurologist in February, and he did preform an EMG, MRI, and nerve conductivity. He said I had very minor ulnar entrapment, but I know minor entrapment wouldn't cause the issues that are occurring. I asked if my EMG was normal, and he said that he didn't see anything that looked like ALS. But, he didn't say it was normal either. He wanted to see me back in three months to reevaluate. He told me to exercise and enjoy myself. It really seemed like he was just waiting to see what happens. Since I can't really exercise, and this issue is noticeable everyday at work and at home, it makes it very difficult to just forget about.

Now for some dumb newbie questions...

1. I know an EMG is the gold standard in ALS diagnosis. Some people say it is 99% while others had three before testing dirty. How bad do LMN issues have to be in order to be picked up on an EMG? Is there a time frame when LMN problems aren't sufficient enough for a proper reading? Am I stupid for even asking this? I know someone is going to tell me to be happy you had a clean EMG and go live your life.

2. Does your whole body begin to weaken after onset, or does it really start in one place and move to each limb? I can still walk without any major issues, but the shakiness from bending down or doing anything minor in my mind shows signs of muscle weakness. The shakiness is in my whole body including arms, back, legs, everything...

3. Is full body shaking even something that occurs early on in the disease?

4. What other disease / issues might you recommend me looking into?

 

[lgelb]

Waterdog,
It would give a better fix on things to know exactly what your EMG/NCV tests said. Ask for the reports, as is your right.

 

[ECpara]

Well, I can only speak from my husband's experience. My husband had an EMG done on his arms, even though his symptom (that we all noticed) was slurred speech. The doctor saw slight fasciculations in his arms and neither my husband or I ever noticed them. He had an EMG performed on his limbs which came up dirty, although he was diagnosed with bulbar onset ALS. He never had any whole body symptoms, and it is my understanding that ALS usually begins in one area and gradually affects other areas, not all at once. In his case, it was just his tongue and arms. I've never heard of full body shaking in ALS, or weakness everywhere like yours. Even in my husband's advanced stages he does not shake. You certainly have something going on but I doubt it is ALS. Maybe someone else on this forum has a better idea what could be ailing you. Good luck!

 

[Atsugi]

1. How bad do LMN issues have to be in order to be picked up on an EMG?
The EMG would pick up nerve damage BEFORE any ALS symptoms occur.

2. Does your whole body begin to weaken after onset, or does it really start in one place and move to each limb?
ALS starts by eliminating one muscle, then moving to the next. The whole body does NOT begin to weaken all at once.

3. Is full body shaking even something that occurs early on in the disease?
Full body shaking does not occur in ALS.

4. What other disease / issues might you recommend me looking into?
I hope this board does not degrade into discussing lots of disease possibilities. That's for educated doctors to do. We, instead, need to focus on "Is it ALS or not ALS?"

I do think you have a neuro issue. I don't think it's ALS.

 

[Waterdog1979]

lgelb,

I will definitely request a copy of the results.


ECpara,

Thank you for the insight into your husbands situation. It really does help point me in other directions. I have a neurologist appointment with our local medical university on the 31st, so hopefully they will have more ideas.

Atsugi,

Thanks for answering my questions. I was just grasping at straws about disease possibilities. You are right, I shouldn't try to solicit ideas about other diseases on an ALS forum. Sorry...

 

[Waterdog1979]

Just an update. I saw another neuro at our local university, and had another emg. In my left hand, I had insetional activity +1, positive sharp waves +1, and fibrillations +1 with no MUAPs or CRDs. Everything else including nerve conductivity was normal. The neuro didn't know how to interpret this, so I am being referred to a neuromuscular specialist. So here is my question... does that mean I had a "dirty" EMG?

 

[affected]

Your EMG found something, but no ALS so that's great news!