Scared it could be ALS

[tom01]

I am a 35 year old male. I will try to make this as brief as possible. In march of 2010 I began with twitching in my right leg. This twitching within weeks spread all over my body (legs,arms, face, eye lids etc.)right side more than the left. I went and saw a neurologist. He conducted an emg on my left side (came back normal). knee reflexes were brisk. The nuero sent me for an MRI of the brain and cervical and lumbar. The brain MRI showed a single T2 Hyperintense white matter lesion involving the anterior limb of the left internal capsule and it may reflect a demyelinating plaque. Lumbar MRI showed a mild annular bulging disc without canal or foraminal stenosis at L4-5. The cervical MRI showed a small herniated disk at c5-6 with mild impingment of the left neural foramen. The neuro concluded I had Benign Fasciculations. Over the next couple of months i began having tingling and burning sensations. Like little hot spots. My hands also became numb. I also have achy pains in my right leg hands and feet. These sensations have come and gone over the last year. During the last nine months i have had three emgs, with one emg coming back with "fascis only" and my CPK was elevated 406. I became frustrated because i knew something was wrong in my body. In february 2011, I found a different neuro during the appointment he conducted the standard physical exam and noted the brisk reflexes. He conducted an EMG and NCV of my right side. The findings were The Right Sural Anti Sensory nerve showed decreased conduction velocity (calf-lat mall, 36 m/s). The needle evailuation of the Right AntTibilias muscle showed slightly increased Polyphasic potentials and diminshed recruitment nothing else (No fasics, PSW,FIBS or AMP) All remaining muscle showed no evidence of electrical instability. The Neuro said he was not concerned with the findings. Since then my legs feel as if they have become weaker and and i get quivers (muscle flikers) in my thighs when i bend down. My joints seem to pop a lot more as well. This neuro also conducted all the same MRI's with the same results. The neuro is going to conduct an emg of the left side next week and plans to send me to Miami University to meet with a different neuro for a consult. The neuro says he does not beleive it to be ALS, but could not give me an answer on what it could be. Sorry for such a long post, I did not want to post on the site with out giving it some time... I also sent this message to Wright for his opinion. If any one has any ideas please feel free to let me know. God bless all of you.

 

[trfogey]

If two neuros aren't concerned about what you have being ALS, why are you concerned about it being ALS? Nothing you've described here sounds like ALS, from the quick onset and wide spread of fasciculations to the "hot spots" to the achy pains. Additionally, this has been going on for a year, yet neither you nor your two neuros report any weakness or spasticity, much less progressing weakness or spasticity.

You've been the victim of the widespread misinformation about ALS symptoms that can be found on the Internet. If you want to feel emotionally better quickly, forget that you ever read about the symptoms of ALS and resolve yourself to not read any more about ALS until a doctor tells you that you actually have it. Then, be patient and let the doctors do what you are paying them to do, which is to figure out what's wrong with you and what to do about it. Second-guessing them hasn't made you feel better thus far, has it, and I don't expect it will make you feel better in the future.

Good luck.

 

[tom01]

trfogey, First i want to thank you for your response. Scared people like myself come to this site to be reassured by people who have first hand knowledge of this horrible disease. I can only pray there will be a cure soon. You are a very special person to tolerate people like myself who are not sure of what they have. I was only hoping to get some incite on why my EMG results have changed. And like the rest of the un diagnosed people (who do not know what they have) like me get scared because there is no simple answer for what we are going through. The Doctors do not always explain why certain things are happening. Thank you again. Maybe Wright can give me some incite on the EMG change. (from what i have read he is well versed with the EMG). Thank you again Trfogey, I will try to calm myself but is very hard without answers.

 

[trfogey]

There may not be a simple answer to what is happening to you, but once again, both neuros have dismissed ALS as a possible cause. They may not have the exact explanation for what's happening to you, but they each agree -- it's not ALS.

Continuing to worry about ALS at this point is a matter of your personal choice and ignoring the medical evidence, rather than a lack of knowledge or a matter in doubt.

If your doctor doesn't give you adequate answers to your questions, pester him until he does.