Symptons since May 2, 2013 but no official diagnosis yet

[Nano]

[U[/U]Hi all,

Let me start by saying thanks to all the regular users of this forum. Your input is much appreciated.

On May 2nd and got a persistant twitch in my left bicep. By persistant I mean a visible, twitch every 3-10 second for nearly 6 months and counting. I had an neuro exam and EMG in June or July and the neurolgist told me it appeared to be the isolated nerve and the rest of my body was normal. He said he would be shocked if I had ALS. I was soo relieved.

Later my left thumb became a little numb and there is visible atrophy of the thumb muscle both in the palm and the back of the hand. The thumb is weak and I have reduced coordination with it. I went back to the doctor and and had a brain and neck MRI(negative for MS). Neck shows arthritis but no pinched nerves. I had a second EMG in September and it was again clean. Neurologist observed left bicep twitch on both EMG's but said it was not an ALS twitch.

After my second EMG I have had slight numbness in my left foot arch and TONS of twitching in the left foot, calf, and shin. I can still walk on my heels and toes but the foot is definitely weaker than the other. If I move the toes with my fingers, it is almost like they are just hanging there. Like there is nothing holding them in place like the other foot. Sometimes the left shin fatigues just by walking 50 yards.

I noticed it feels like have less meat in my left hand in foot. I say this because it hurts to walk barefoot on hardwood floors and if I lift weights, my left had hurts from gripping iron.

Neurologist told me he would be suprised if it was ALS. It sounds like he is basing this almost exclusively on the 2 EMGs. This concerns me a little bit.

About two weeks ago I have noticed a slight numbness of my tongue and I feel like Im slurring some words. When I wake up I realize I am unconsciously pressing my tongue to the roof of my mouth very hard. I never did this in the past. I have had severe jaw pain(possibly gritting my teeth at night from the mountain of stress Im under right now) I hear fluttering in my left ear which I assume is fasciculations in the ear. I had a ton of bloodwork done to rule out everything else and I did have a vitamin D difficiency. I am taking lots of vitamin D now.

I kind of feel like it's a hurry up and wait till things start falling off game. :-o

Any opinions(as long as they arent mean) are welcome!

 

[JEB1979]

My situation is similar to yours. I was living overseas until August. I started noticing twitches in both my calves around the middle of May. Went to a neurologist and he first prescribed some muscle relaxants and other things, told me not to worry about ALS because I was too young (I'm in my mid-thirties). Muscle relaxants did nothing, so then he prescribed another medication, which also did nothing, and then he prescribed something else, which also did nothing for the twitches. He did thorough bloodwork, and everything turned out normal.

The twitches in my calves were (and are) constant. Sometimes they're stronger, sometimes they're weaker, but if I look at my calves, I will sooner or later see several twitches. I was also getting twitches in other parts of my body - my neck, my knees, my thigh, my buttocks, my stomach, my biceps, my hands, my feet, and recently, even my tongue. The neurologist I was seeing told me he was stumped but he still didn't think it was ALS because of my age. He ordered an EMG for me, which turned out clean. However, I'm a bit skeptical about the EMG because I've heard that thorough EMGs take 60-90 minutes, and the one performed on me took about 5 minutes. The doctor did not perform a nerve conduction test. He said my EMG was normal, and the neurologist I was seeing basically said he didn't know what I had.

I came back to the US and saw my regular doctor, who took note of my symptoms and sent me off to have another EMG done. This time the EMG was performed along with a nerve conduction test, but only on my legs. The EMG results were normal (I don't understand why it didn't show the fasciculations in my calves), and the nerve conduction test showed sensory-motor peripheral neuropathy.

From what I understand, sensory-motor peripheral neuropathy does not usually show fasciculations. This has me extremely worried and tense, since it now seems either I have two completely separate conditions (what are the odds of that?), or the neuropathy is a symptom of the ALS.

I don't know if this is related, but I have started losing my voice since last week as well. I'm hoping that's just some throat infection, even though it is NOT painful like throat infections usually are...I just have a scratchy voice for seemingly no reason.

 

[Nikki J]

Nano I suspect your neuro based his statement on the EMGs AND your neuro exam. What did he/she say about your atrophy and weakness? Your reflexes? Was there a provisional diagnosis? Is there a plan for follow up perhaps after your vitamin D is replaced?
As you know if you have been reading here early signs of ALS are not generally about what you feel but about what you can or can not do. It is a motor disease not a sensory one. As it progresses there may be pain because the muscles do not support a person correctly. All over twitching as you described is not usual either. Was BFS mentioned to you?

JEB in sensory MOTOR neuropathy fasciculations are not that rare

Best wishes to bith of you

 

[Nano]

Thanks Nikki for the reply! My reflexes were normal. The neurologist threw out a possible neuropathy as the tentative diagnosis but I havent been back since the tongue and jaw issue. I have a lower back MRI in a week to see if a nerve my be pinched causing the foot issues. He suggested a third EMG in 4 months. I am hoping for the best but I'm afraid it's the worst.