I finally have a diagnosis - Closure at last

[Snmartinez87]

I used to post under zaranataly back in 2011 and then I used this username to post. Anyway, i came back because I received a lot of help and advice from everyone here and I believe that it's the right thing to do to come back and share with you my diagnosis. Dr. Killian from Dr. Harati's office @ Baylor finally diagnosed me with some type of autoimmune disorder that attacks my nerves/muscles (morvan's or Isaac's syndrome) Dr. Killian told me that my fasciculations are NOT benign and that I should start "treatment" - there's no cure- right away.

In 3 years the damage to my muscles especially my mouth, tongue, face has become pretty evident. I have diminished reflexes, no gag reflex, other reflexes are completely absent, etc. I have a droopy eyelid and double vision that at this point is only bothersome when I try to drive at night. I have clinical weakness on my left leg, hand, and arm.

I saw Dr. Killian on Sept 5th & I should be back to Houston on Sept 12th for a treatment plan (plasma exchange perhaps?)

Anyway, thank you all! And to those that have twitches and progressive symptoms please don't give up! Search for answers because you're worth it. It takes years and years to diagnose some of these diseases because of their nature but don't give up.

Best of luck!
https://youtu.be/J8l_JZDATOg

Here's my YouTube channel and my recent update I hope it helps.

 

[gaurav]

You are a brave women. You helped more people around globe than you may think. I thank you for sharing your thoughts.
Regards

 

[Snmartinez87]

Thank you.

I wouldn't dare to compare my journey to those who suffer from ALS. I pray that one day there will be a cure for ALS & all other diseases/disorders that affect our muscles/nerves. Keep on fighting ����

 

[4tloml]

Sometimes it's a relief when they finally "name the beast." So glad it is not ALS and best wishes for successful treatment.