MY MISDIAGNOSIS

I was sent to a neurologist by my primary doctor because I was going in and out of paralysis. I had gone from walking to a cane, to a walker than a rider. I had a stroke, and my health was declining. The neurologist was with me for less than 10 minutes and he diagnosed me with silent margarines. He wanted to give me 31 BOTOX shots in my head and neck. I said no. He claimed I would be back to work within 2 weeks. 

My health kept declining, I lost my employment and my insurance. I had to get on Charity Financial. I started having serious health problems diabetes, high blood pressure, GERD, another stroke, tumors on my brain, left lung and uterus, gait problems, paralysis got worse, vision and hearing problems, chest pain, spasms and more. >>>  Read More

My primary doctor contacted my neurologist again telling him there was changes in my stroke. He finally saw me and was not happy that I was on charity and begin to say we are going to use up that charity and how mad they would be and he was laughing. He did many referrals of tests and over 40 bloodwork, he was very rude and arrogant about it. 

I waited to hear from him to get my results. Finally, I contacted his nurse and asked for my results. The conversation below is between the nurse, neurologist and two of his colleagues who were also neurologists. I knew nothing about this conversation until after I got out of down step ICU and rehab for 22 days. And they had dismissed me as their patient and refused to see me for anything.

Conversation Between my Neurologist, his nurse and 2 other of his Neurologists (Colleagues)

Patient (Me) to Nurse: Has Dr. ***** seen my bloodwork? I want to know my results.

Nurse to Neurologist: Patient would like to know if you have reviewed her bloodwork. She wants to know her lab results.

Neurologist to 2 other Neurologists: Will yall check her paraneoplastic panel and LMK your thoughts I think she has a AIDP or CIDP variant. 

She has a EMG w/ Dr. name removed in late March.

My Neurologist: 

I have been watching these trickle in. Her paraneoplastic panel shows + Antibody result that I want the input of our neuromuscular specialists on. I am just waiting to hear back Dr. ***** . She needs to EMG that she has w/ Dr. **** later this month. This will help clarify thinks some, but she may have an autoimmune neuropathy.

Another Neurologist to my Neurologist: Probably Guillain-Barre Syndrome QD1A antibodies (usually AMAN proacted recovery...) Thanks

My Neurologist back to the other Neurologists: Role IVIG or wait and see what EMG shows?

Neurologist Response to my Neurologist: It depends on the timing. If her weakness or GBS symptoms were within the last 2 months I would empirically give her a trail IVIG 2 g/kg divided over 4 to 5 days premedicated with Benadryl and Tylenol, even prior to her EMG / NCS, but it may be easier to get the IVIG approved after electrodiagnostic testing.

(NOTE: My neurologist already knew it had been 9 months!)

Another Neurologist Agrees: I agree with Dr. ******* on this

(This is the one I had scheduled to do an EMG with who dismissed me as his patient along with my neurologist because I could not make the appointment because I was in ICU, hospital & rehab for 22 days but was told it would be canceled.)

Nurse: She claims she has tried called me many times. 

(NOTE: I receive no calls or messages from her at all)

My Neurologist to His Nurse: I took care of this and admitted her last week and gave IVig inpt

(NOTE: I was supposed to get 5 IVIG treatments in down step ICU, I only got 4 because a nurse drop and broke one all over the floor.)

**********END IF CONVERAATION ***********

I knew about the test results since March 1, 2021, because I have portal where I can see my results. I waited and waited and finally called his nurse to get my neurologist to contact me. This conversation between my neurologist, his nurse and 2 other neurologists that he works with took placed between March 12 - the 23rd. The results came in on March 1, 2021 and He did not call me until March 17, 2021.

I was put in down step ICU on March 17, 2021, GBS is suppose to be treated within the first 2 months. My neurologist already knew it had been 9 months since I came to him, and he said I was having silent migraines and wanted to give me BOTOX. 

I refused BOTOX and that I was having silent migraines. I lost my insurance from my employment and I got put on Charity Financial. My neurologist refused to see me again until Feb. of 2021 when he ordered over 40 bloodwork on me.  Also at this time he laughed at the tumor on my brain because it was only 2 mm in size & said it was no big deal. As of 2024 it has now grown to a 10 mm. I have another MRI Dec. 31, 2025, to see if it has grown anymore if it has my new Neurosurgeon will do the Gamma Knife.

(UPDATE: It is still a size 10 mm. I have another MRI in 2027.)

My neurologist called me on March 17th, 2021, and he asked me if I knew what GBS was and I said yes cause I already seen my results and researched it while waiting for him to contact me. He asked if I was willing to go to the hospital for him to admit me and I said of course I am. He then told me he still thought it was migraines and hung up the phone on me. 

I went to the hospital and was admitted into down step ICU, then to hospital room and then to medical rehab. I was given IVIG, physical, occupational and speech therapy. I was in for 22 days! After I got out none of the neurologists would see me, again. They are claiming I did not show up to my appointments, I couldn't because I was in down step ICU, hospital and rehab. I told them at the hospital about my appointments and they claimed they would cancel and reschedule them for me. They did not but instead I was dismissed as their patient.

No neurologist will see me in Oklahoma because I had GBS and now CIDP. And now I am unemployed and disabled. 

GBS & CIDP 6 YEARS SURVIVOR!

 JUNE 20, 2020 - JUNE 20, 2026

THANK YOU, JESUS!