Bookay87
Active member
- Joined
- Jan 28, 2016
- Messages
- 35
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- Virginia
- City
- Richmond
Greetings All, I am a 46 year old Black woman who was diagnosed with Progressive Bulbar Palsy in August 2015. (stressed my race because I haven't ran across many African Americans with this disease and I hope to raise awareness among my race)
My symptoms started slowly I noticed a slurr in my speech around Oct 2014 as months past by December it had gotten more noticeable and while at a speaking engagement I became so winded I couldn't get my words out. A few days later while a work one side of my face went dumb. I ended up 2 days in the hospital being tested for a stroke. They found nothing and sent me to a speech therapist. But I didn't go. a couple of weeks later I went back to my PC and said Look something is wrong and it is'nt that I cant talk. Why can't I talk in my normal matter and I'm tired all the time. She sent me to a ENT who sent me to a neurologist at VCU.
They did the EMG and everything looked fine. He initially diagnosed me with MG and put me on presidone. In June I caught a cold and ended up back in the hospital for 5 days. I had breathing issues and was choking on everything and had the worst heartburn. There ran further test there and in August I received the diagnosis of PBP/ALS. I had a 2nd EMG done at John Hopkins and those Drs concluded the same thing.
HOWEVER I have faith and maybe thats my diagnose but is not going to consume me. My boys are grown and live away from me in Florida. I have my mom and sister and great friends and WE ARE ALL FIGHTING. In November I completely changed my diet. I cut out all processed foods and sugars. Yes I lost 20 lbs I was 199 (i'm 5'5.. I could stand to lose a few . My Dr's werent happy but guess what ... the bloating and heartburn disappeared bye bye meds..and my energy returned. And I don't choke unless I drink to fast or put to much food in my mouth.
I do have some weakness in my left hand that comes and goes. I'm am taking the Nudexa and Rilulze too. The Nudexa helps my tongue movement. I'm not biting it nearly as often. I run 2 miles 4 days a week and I do weights 3 days. My weight has been holding at 173. I recently read a book called Eric is Winning and it has inspired me to look at nutrition in a ways to heal. Thanks for reading my story and I look forward to learning about this disease and fighting with all I have. Be Blessed
My symptoms started slowly I noticed a slurr in my speech around Oct 2014 as months past by December it had gotten more noticeable and while at a speaking engagement I became so winded I couldn't get my words out. A few days later while a work one side of my face went dumb. I ended up 2 days in the hospital being tested for a stroke. They found nothing and sent me to a speech therapist. But I didn't go. a couple of weeks later I went back to my PC and said Look something is wrong and it is'nt that I cant talk. Why can't I talk in my normal matter and I'm tired all the time. She sent me to a ENT who sent me to a neurologist at VCU.
They did the EMG and everything looked fine. He initially diagnosed me with MG and put me on presidone. In June I caught a cold and ended up back in the hospital for 5 days. I had breathing issues and was choking on everything and had the worst heartburn. There ran further test there and in August I received the diagnosis of PBP/ALS. I had a 2nd EMG done at John Hopkins and those Drs concluded the same thing.
HOWEVER I have faith and maybe thats my diagnose but is not going to consume me. My boys are grown and live away from me in Florida. I have my mom and sister and great friends and WE ARE ALL FIGHTING. In November I completely changed my diet. I cut out all processed foods and sugars. Yes I lost 20 lbs I was 199 (i'm 5'5.. I could stand to lose a few . My Dr's werent happy but guess what ... the bloating and heartburn disappeared bye bye meds..and my energy returned. And I don't choke unless I drink to fast or put to much food in my mouth.
I do have some weakness in my left hand that comes and goes. I'm am taking the Nudexa and Rilulze too. The Nudexa helps my tongue movement. I'm not biting it nearly as often. I run 2 miles 4 days a week and I do weights 3 days. My weight has been holding at 173. I recently read a book called Eric is Winning and it has inspired me to look at nutrition in a ways to heal. Thanks for reading my story and I look forward to learning about this disease and fighting with all I have. Be Blessed
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