ALS

[sandradnana]

I have been having muscle cramps ,twitching, weakness in may legs feet and arms and hands. I have difficulty swallowing and my speech has became slurred and weak. I am very prong to phemonia and in the last year even with the shots I have had it 3x. I stumble and trip and it is hard for me to sew or pick up things or turn the door keys. My uncle died with ALS in 1996 at the age of 56 , I am 52. I have been told by my internist it is ALS but 2 out of 3 neurologists said I do have neuropathy but the 3rd The one I am seeing now wants me to see a neuromuscular doctor. He said all the test were fine except that needle in my muscles gave his face a strange look. In my heart I know that I have ALS but I feel the doctor is afraid to tell me. What should I do? ANy suggestions? The other 2 neurologists were seen last year at the onset and they just said I did not "look" like someone with ALS. I even went to my orthopeadic dr and after his examination, he even cried and said I needed to see my new neurologist.

The new dr is now wanting to send me to a neuromuscular dr . What do they do?

[ewrace]

I am a rsd patient but all I can do is listen and be there for you.Have you researched the internet for the top doctor in the field?Maybe go that route.I there is one thing I learned is always listen to yourself. Most doctors only speculate to save face.You will know when you find the right one.You will feel it in your soul.Hope this was some help.
Wendy

[slkunka]

My husband was diagnosed in 06 after 2 years of going from one doctor to another. Find a good hospital in a large city with doctors that specialize in ALS. Contact the Les Turner Foundation if you are near Chicago. If not then contact ALSA. Do a google serch. Stop wondering and find an ALS clinic in your area. There is no one test to determine if you have ALS. They can only rule out what it is not. Good Luck to you. ps. Even if you are not in the Chicago area go to the Les Turner site. They have a lot of good information and have helped us through a lot of hard times. My husbands story is on page 10 of the fall newsletter.

[vinci]

Dear Sandra,

I have also had alot of the same symptoms you are having, and my neurologists keep telling me it does'nt look like ALS! I have gone to a Specialist for a possible diagnosis, and I was told that I have benign fasiculations, which another neurologist I emailed at Cleveland Clinic, told me not to listen to them! Find another Doctor! Im not saying Specialists are all like that! By all means, GO to the specialist and see what he says! If you are not satisfied, do alotof research on your own, and contact ALS clinics and research centers, as many as you can find! I even had a Doctor at the emergency room tell me several times that I have classic symptoms of ALS< buthecannot make the diagnosis himself because he is not a Neurologist! DON'T GIVE UP! I know you are scared! Keep going to doctors and specialists! Cry, scream<, yell, do whatever you can do to make them listen and pay attention to you! It is your body, and you know what is happening to it, just as I can tell something is wrong with my body!

God Bless You! Keep you're head and spirits up high, and don't stop fighting until you get the answer you feel in your heart is true! You are in my prayers!

Vinci

[lorif]

My dad was diagnosed with ALS about 9 months ago. He goes to the ALS clinic at Duke Hospital in Durham NC. He sees Dr. Bedlack. He is a wonderful doctor and a reknown specialist in this field. If you are close, please go and see him.

Good luck to you.