TNTony or anyone about ALS Fears

[vanvechten]

I posted this on 7/17...please...help!
You sound like a very compassionate person who has gone through a lot.  Perhaps you can help me.  I am 53 with a heart pacemaker and a bladder pacemaker due to a neurogenic bladder.  I have NO signal from the brain to the sacral nerve to stimulate my bladder to contract.  That's taken care of now with the device.  My symptoms began 3 years ago.  I've have numerous EMG's, etc. over the years--all negative.  However, even though the meds I'm on help immensely and enable me to still work, I have chronic muscle pain everywhere from time to time; atrophy in my hands and feet, as well as my legs; severe hoarseness that comes and goes; weakness from knees down.  The newest problems are occasional tingling and numbness on left arm to the hand and a tingling on my lower lip.  I am very careful when I eat because I choke easily.
The last neuro got a bit aggravated with me because the EMG did not show problems, and he assured me that I do NOT have ALS or any other n-m disease, but I continue the above as well as losing weight.  What do you think??  God bless you, and take care.  P.S.  My psychiatrist is concerned about me and is the one who has managed my meds so very well.

[vanvechten]

I thank you for your honesty and candor.  I, too, wish you the best and God's blessings upon you and family.

[TNTTony]

P.S. My urologist, has even written to the nuero and told him my bladder problem is nuerological and most likely als. Still he refuses to think that.

[TNTTony]

Sorry I haven't come here much. There is a much better site, with more people. Actually, consider yourself lucky. I have the same bladder problem, and they will put a bladder pacemaker in. I must confess that I am going through the exact same problem. I have all the symptoms am in a wheelchair becuase of leg weakness, can't swallow etc... I even have proof  that on me the emg is inaccurate. I have documented ulnar nerve damage 100%, yet at each emg it registers completely different, even one time showing absolutely nothing. I am a vet and go through the VA.

That said, while I do not wish to make a diagnoses, as I am not a doctor, your symptoms do indeed appear to be als. I truly know what you are going through. The other site I have mentioned is http://www.*********.com/forum/other/         one note of warning, there are a very few who make snap judgements and since your emg is normal, they will tell you is absolutely not als, they are as narrow minded as some doctors so hunt out a few and private message them. I am TNTTony7 on there, feel free to add me. And I will tell you some other older members in the same boat. Be assured we are not the only ones going through this. God bless you!