Desperate

[tommazza1958]

I am also desperate and very upset. In July my voice became very weak, I am a 53 year old reasonably healthy male who did a lot of speaking. I was cleared for ALS by 5 different neurologists. I have a slight swallowing issue as well. There are no other symptoms. In fact I am lighter and stronger since July. i have no balance issues and am active. I had MRI. CAT scan, extensive blood work. They thought I had myasthenia but I did not respond. Finally a few days ago a neurologist with more ALS specialty said "you may have it." He wants a more extensive EMG and I can see some weakness in my tongue. Again, my voice is damaged but I am very strong. i am overwhelmed now and some how feel all the symptoms of ALS at once. Thinking about stem cell therapy, trial drugs, chinese meds all at once. i am going to Johns Hopkins for another evaluation. Please help me. i feel as if I can't sit still for a minute. Do I close my business and focus on treatment. Please help

 

[Zaphoon]

Re: Do I have ALS? Please help me. I am desperate.

5 neurologist cleared you of ALS? Terrifically good news!

 

[HelenL]

Re: Do I have ALS? Please help me. I am desperate.

tommazza1958, you've seen more than 5 neuros since July and they've all cleared you of ALS? Except for the latest... Are you shopping for the answer you want to hear?

Have you ever heard of a neuro problem called spasmodic dysphonia and been cleared of that? A friend of mine has it, its in the vocal chords and she loses her voice. Needs a botox shot every 4-6 months in the vocal chords here in Boston in order to speak. There are many other things that can cause neuro issues besides ALS, please remain positive that yours and Kool Buddee is SOMETHING else.

Kool Buddee, don't take it personally when people go off on a joke tangent, it's just sometimes that humor is the best medicine here... and these guys are the best... it's really not about you per se, more than the constant barrage of questions from lots of people. Be thankful that they are here to answer your initial questions, and please read other threads before asking for our private info. I "lurked" on this forum for nearly 9 months while I was in denial of my ALS diagnosis, as I totally thought it was something, anything else... you know if I was told it wasn't ALS, I wouldn't have been on this forum at all, but would be looking for my answers somewhere else.

Happy new year everyone!

 

[tommazza1958]

Re: Do I have ALS? Please help me. I am desperate.

Thank you for your kindness HelenL. I really do NOT want a diagnosis of the disease. The reason I have seen 5 neurologists is none could figure out why I have the voice and swallowing issue. The neurologist that says I may have ALS is at Penn and this is his specialty. I will check the condition you referenced. I am just so scared and am literally frozen by this.

 

[Alyoop]

Re: Do I have ALS? Please help me. I am desperate.

Tomazza, you really should start your own thread, but you must know you don't have ALS, and I am not sure why you are obsessing about having it,
Please also be aware that stem cell therapy is quakery and does not work. Explain to us how stem cells will help your weak voice or why you would risk your health on unproven and sometimes dangerous therapies?

While writing this you second post came up, confusing why now you say you DO have a diagnosis of ALS, rather an important piece of information to leave out! I suggest you go to the top left of the page and start your own thread. Most people are not checking this one. Make sure you give as much information as possible, or you will waste peoples time.