Neuromyelitis Optical Spectrum Disorder NMOSD

Hi my name is Sidney. I am happy and thank God to be able to write this story right now because I thought I would never be able to see again.

 

A GoFundMe is something I thought I would have never had to do in my life but because of my finances I am embracing humiliation by asking for a bit of help from the masses. I do not have medical insurance and this was a random traumatic situation on my health while creating a financial burden upon me. I am still in shock to how this disorder even came about. Mind you, my family has no history of any autoimmune diseases what so ever from both my mom and dad's side of my family.

 

So... You are probably wondering what happened or what am I diagnosed with? Before we get into that, I want to tell you the story of how I got to this point in a few chain of events. Maybe by just hearing the story we can both figure out what was my cause because my Doctor's still have no medical reason on why this happened to me. Antibodies are all that I can speak of to the Doctors. What we can apparently see. Aside from what we can see, here is what all that occurred and what I will still have to deal with possibly for the rest of my life.

 

 

It all started on...

 

 

November 20

I had a meditation session with two other friends and after that session I decided at almost 2 in the morning to go visit a friend. This friend has many dogs which two were not caged when i got there. One of the dogs which normally is in a cage was one of the two that was free. Upon arriving at the apartment, I knocked and then opened the door. Right there, the dog that is normally caged runs towards me and latches on the my backpack that was in my left hand. My backpack had my new Dell laptop in it and I had just gotten that laptop so I didn't want the dog to break it. I held onto my backpack so the dog wouldn't shake it as dogs do when they have a firm grip from their teeth. As I tried to make sure he wasn't biting on the the actual laptop he then let go of the bag and bite onto me. He dragged me from the living room to the bedroom in what felt like eternity lasting 3 minutes before getting the dog to let go. That night I ended up with many stiches and traumatized,

 

 

After the dog bite i later understood I needed a Tetanus shot due to dogs producing certain bacteria in the mouth that could potentially be infectious. So the smart thing to do was to receive a TD shot and who readily had these shots available? CVS, walgreens, doctors clinics, etc.? I scheduled with Walgreens on hwy 6 and Bellaire for a TD shot on

 

November 24

On this day of the shot I didn't feel or experience any side affects known to accompany vaccines or the TD shot specifically. That day and the following days were normal and I had no issues with any parts of my body.

 

Details of my Vaccination

Type TD Tetanus Shot

NBC # 68160-0842-52

Manufacture: Glaxo Smith Kline

Lot # 57DE9

Exp 11/12/23

 

 

 

 

 

 

 

 

 

November 27

Then the weekend came and I started to have head aches that were mild and two days later those mild headaches turned into heavy migraines.

 

November 29

Waking up with migraines behind my eyes became an everyday pain. The pain was as if someone were pushing my eyes balls outward from behind. My left eye pain more prominent than my right at this time. Pulsating at the same rate as my heart. Now you know if I am feeling my heart behind my eyes, something isn't right but I didn't think it would continue but it continued everyday and strengthened with ever morning wake.

 

December 10

My left and right eye began to loose vision with the right more of loss in vision. At this time i began to question what was going on with my eyes. So i scheduled an appointment with an optometrist scheduled on

 

December 15

At this time of visiting the eye doctor my vision was degrading quite a bit. During the eye exams i couldn't pass any test with my right eye and the left eye barely made it and failed just as bad as the right. The optometrist then informed me to see an ophthalmologist because there was something happening to my eyes he could not diagnose because the issue was behind my eyes. The area where most of my pain radiated from. He could only view the front of my eye itself.

 

December 16

I couldn't get an immediate appointment with an ophthalmologist so i went to the emergency room early in the morning because the pain and vision loss had grown quite a bit. 60% blind in the left and 85% Blind in the right. I waited in Memorial Herman hospital for about 3 hours and decided to leave because I was not getting attention i needed.

 

Later in the day i luckily was able to book and see an ophthalmologist the same day and he was able to see in my eyes to tell there was some form of liquid or mucus forming on my nerves and I needed to immediately go to a hospital he stated to me and the person who was helping get around.

 

 

December 20

Days had passed and i didn't really take the doctor serious until i woke up and couldn't see out of my right eye 100% and my left eye was barely holding on to any sight I would say i was about 90% blind. No color and barely any visual. Again, at this point I had lost all color in my vision and I couldn't tell a dog from a car. I so that blind that I had to depend on sound and touch with a person guiding me. My eyes were feeling as if a baby had grabbed the optic nerves and was squeezing them like a stuffed animal. I never understood chronic migraines until I experienced this situation. At this point i am being rushed to the hospital by a friend.

 

 

 

 

 

Blind as a bat I arrived at the hospital and went through all the floors and rooms to get me to see (no pun intended) some one immediately who checked out my eyes and immediately got me into a hospital bed. Luckily i only had to wait less than 45 minutes and doctors started to work on me due to the severity of my blindness and eye to light response. They checked my eyes about 100 times with 16 different nurses and doctors that speciated in ophthalmology, neurology, optometry and what ever other medical word ending in -ry there was.. It was like i was in some type of lab test experiment because every doctor was shocked in what had occurred with my sudden blindness. They were amazed by what had came hurting through the emergency doors. A rare case of Optical Neuritis, inflammation of the optic nerve. A liquid was excessively building up in my brain above and behind my right eye and not draining. The liquid contained an antibody that was attacking my optic nerves with emphasis on the right. The situation later was diagnosed with a presentation of Neuromyelitis Optica Spectrum Disorder NMSOD. How They diagnosed me with this beats me but to resolve it I had to go through many tortures to reverse what had already started.

 

So they eventually had me do a CT scan to see where the fluid resided in my brain.

 

On that same day I had to go through a Spinal Tap, Lumbar Puncture to release some of the fluid in my brain and that they would be able to run lab test on that fluid for antibodies. Because it was an emergency I had to go through with it without equipment. The doctors said that they recommend that I did this immediately do to me being completely blind and they didn't want to wait on radiology. Waiting on radiology would take 2 days for the appointment. No telling what would of occurred with me in two days waiting. So I went with it. The lumber puncture spinal fluid extraction without Xray equipment, i will never do this in my life again. The main doctor and his apprentice for this procedure did this without any electronical assisting equipment. All I can say for this experience is that they tried for 30 minutes sticking some needle in my back towards my spine while I was in fetal position and it was unsuccessful. I have never screamed and cried so loud in my life. The noises I was making were so loud it radiated through the hospital floor I was on. At one point I heard the main doctor tell his aprentice that he would hear a pop once they were in the spinalarea they neded to be but he couldn't hear with all the shouting from me. They kept hitting the nerves in my body which were triggering my legs to constantly shake and jolt. After hitting my nerves 4 times I begged them to stop because at that point I couldn't handle it anymore. I pleaded that I would wait for the radiology and we did that.

 

Then later in the day they ran a CT scan on my brain to see what ese was going on in my head.

 

December 21

Spinal puncture was attempted again under the right circumstances, a radiologist and xray to perform the tap which made the procedure not as traumatizing. Smooth. This is what I would recommend anyone to do. The proper way which was painless.

 

December 22

I went through MRIs for the doctors early that morning and then later that day a few doctors came to my room and told me about me needing 5 days of Steroid treatment (5x). In addition to the steroids they said I would need to place a catheter in my neck for 5 plasma exchanges. The plasma exchange was to remove the blood from my body containing antibodies and putting it back in clean withthe antibodies removed. They said this was recommended to lessen the antibodies that were attacking my system. I cried when they explained this to me because it was a lot of information for one day. I am paraphrasing what all occurred and was said.

 

 

December 23

That early morning, they cut my neck and placed a long tube through my vein to my heart. This procedure took about a hour and didnt hurt at all. All the pain came afterwards. Everyday and moment neck spasms which was arthritis due to the catheter placement for plasma exchange. It was stated that i was going to get 5 procedures of this Monday weds and Friday for the next two weeks. Now i wont go into each of those days experiences to shorten this story. Just know that every morning at 7am on those scheduled days during the week I had to go to dialysis for 2 1/2 hours in one position which was torture because again all the exchange was done through my neck to my heart.

 

 

 

 

 

 

 

Days Passing to December 31

After spending Christmas in the hospital with no visitors due to Omincron, my 5 steroid IV treatments, 5 plasma exchanges and lots of pain meds I was able to see color and my vision started to come back. My right eye was about 80% bad and my left was about 50%. The right eye couldnt read letters but the left could to a certain size and at a certain distance. I felt relived that the doctors had helped me with haste but I was still worried that my vision was still bad. Doctors then told me with all the tests on the blood that I gave and spinal tap that I had some possible form of MS. Luckily I have no lesions on my spine or brain. The cause of this still was unknown by the doctors although i told them countless times i got a TD vaccine. Again when i mentioned this they ignored me. One doctor out right said no.

 

Jan 1

The catheter was removed from my neck that morning and later that day I was released from the hospital with my vision back but not like it was before. When in bright light its hard to identify faces or facial features on individuals. I am unable to drive. Computer use is minimal due to the blue light and white background to most windows causing me headaches. Writing this go fund me took me 3 days to do. At night it is almost impossible to see anything. Lights in the dark is probably how deers see lights when cars pass by, it seems like way too much lightering. I wish i could better explain my vision but its just hard to explain. Just imagine a image with the brighter stting on high and during the night the contrast is just super low. In other words im some what blind.

 

JAn 5

I am finishing this GoFundME and my eyes do not seem to be getting better. Not as bas as when i got into the hospital but i feel as if my eyes are not getting better. My left is as bad as the right now and they both seem to be experiencing the same vision loss at the moment. I am confused becasue the doctors do not know what is going on. Luckily i have an apointemtn for the 7th and the 11th to see what will be done with my eye issues. I am currently not on any meds that i think i should of been prescribed upon leabong the hospital but I am not.

 

Anyway there is much to say but i would be typing for days and i need not make this story too long and exhausting. I am really gratefully i can at least see.

 

My reason for this GoFundMe is to make people aware of what a vaccine can cause, i am living proof and for assistance in paying my hospital bill due to me not having insurance. This event was super random and was not expected and I feel as if now my year 2022 will be devoted to finding a solution to my eye sight.

 

 

 

 

 

 

Thanks to all who at least read this story of mine and to those who donated, even if it’s 1 dollar I appreciate it.

UPDATE: many people are worried about gofundme fees. I wasn’t aware about how much they take. alternative donation methods can be made through Zelle or cashapp which will be allocated towards the bill. 

Zelle - 3469324677

Cashapp - $TABOBinc

 

*Sorry for typos and grammatical errors again i am still suffering from visual impairment and some color loss while dealing with head aches looking at the screen.