Scared it may be ALS

[Myscootch]

Hi Nikki and Ottawa Girl,

Thank you both for your quick responses!

In regards to asking about ALS, I was exhausted, being rushed out the door to get the bloodwork, and the doctor was gone after the referral! I did however send him an email with All my questions and hope he does respond or someone in his group!

As I stated I was a bit baffled that he just didn't say it was ruled out as this is his speciality and as scary as that disease is, I would have really thought there would be mention that this was off the table completely?

I will try again tomorrow to call and get an actual person (always get answering machine) and try that avenue first thing in the morning! I just was hoping someone would have an idea or experienced the same kind of situation and if this was just part of a standard process of elimination!

Also the ALS doctor ordered the bloodwork and I was told additional bloodwork will be done for him in a couple of weeks and since he referred me to someone else, I am extremely confused why he is ordering additional bloodwork versus the new doctor?

Again, thanks to both of you for your quick responses and as I said, I'll try tomorrow!

With warm regards,
Betty

 

[Myscootch]

Hello again,

Well I'm back yet once again! I was informed by the team of the ALS specialist that it is not off the table as of yet and still a possibility. Several days after I received this information I received a copy of the report. The doctor stated there is atrophy on the tongue and he saw the fasciculations in the right leg while I was there. Also he proceeded to write and indicated it may all be in my head (psychological). I told him that was fine and I respected his opinion via an email and would go to a mental health professional. Within 40 minutes of sending the email the doctor calls, states he made a mistake and feels I have a legitimate disease. He also stated ALS is not off the table.

I am going to a fourth guy on 9/4/13 for autoimmunebatxi and am really feeling scared and confused as I am not sure what the heck is going on as these are supposed to be the top guys at Columbia University. Also the ALS guy stated he would retract and rewrite his report but than someone called today stating he does not rewrite the reports. I received a second call from the ALS guy stating he contacted this next doctor and told him not to read his report and to see me as a new patient.

Is this type of behavior normal in this field? I don't seem to be getting anywhere with a diagnosis and these doctors have what I consider two very serious diseases on the table and yet I sit here day in and day out trapped in my apartment, scared and due to their behaviors terrified to even go to the next doctor.

Any thought from anyone please?