I need help. I have to become a detective and put together the pieces of a puzzle that seems to be a mystery. Basically I am an episode of HOUSE without an egotistical Doctor who can't live until he figures out the answer.
So lets get to it.
1. I gave birth to a little girl who was Anencephalic (no brain or back of her skull)
2. I gave birth to a little boy with Spina Bifida, Hydrocephalus, Chiari Malformation and a host of other problems.
3. My third pregnancy was a miscariage.
4. I became ill around the age of 21 when I started to suffer from sever migraines. I also had a bad case of shingles on the left side of my back. About a year later I was relaxing at home after a long day at work when I suddenly was overcome with horrific pain that I can only describe as nerve pain. Its like a lightening storm in my body and the lightening strikes move around. I guess the best way to say describe it is to have someone turn a cattle prodder up to 10 and just poke you over and over in multiple places.
5. I have double vision
6. I have Chiari Malformation that was decompressed in 1999.
7. I have a slit like Syrnix (Syringomyelia) at c5 - c7
8. I had psoriasis covering my body until I went through my Chiari decompression and within 5 days of the surgery every flake and sore was gone.
I did very well after my Chiari Decompression, lost a hundred pounds and became an avid ballroom dancer. I exercised all the time. It took 11 years and many test and doctors to finally be diagnosed with Chiari Malformation. They told me I had Epstien Bar, then they said MS, then they said I was just depressed because my children had such dramatic medical conditions. When my daughter died they literally dismissed all my symptoms to depression for along time. Now my son is 23 and doing very well and I have two healthy daughters as well.
The last several years I have been going down hill very quickly.
1. I have two different sized pupils that they tell me doesn't affect anything.
2. I have a persistant trigeminal artery that although rare is benign as well.
3. They tell me that my Syrnix is also benign.
4. I have a pollup in my left lung that they also say is not causing any of my symptoms, but they will follow it.
I was diagnose with Myastenia Gravis in 2013 but am seronegative which means I have the symptoms but the bloodwork comes back negative.
I am exhausted all the time, I lose my voice easily, I choke on food (which I always attributed to Chiari) My right eye droops dramatically, but my new nurologist thinks my MS is well under control.
In Feb I was put in the hospital for 6 days because I lost control of my right side including facial muscles and voice for several days. They were convinced I was having a stroke, but I knew it wasn't.
I had a MRI in 2013 that reads: s/P subocciptal decompression,
cerebellar Tonsils may be a few millimeters below the Foramen Magnum.
Single Patch of ABN T2 Hyperintense Signal In White Matter of R Posterior Frontal Nonspecific
Basilar Artery is ery small
Persisntent Trigeinal Artery which connects to the upper basilar artery
lower basal artery is very hypoplatic, perhaps nonexistant
no aneurysm, Atherosclerotic stenois or AVM
This is a list of the symptoms my adult son has written down:
loss of voice during day/ after ten to 20 mins aof talking. Sometimes wakes up with no voice depending on how good of a nights sleep she got.
extreme exhaustion after doing one physical thing. (Said thing can be very small like blow drying her hair)
weak limbs - very little strength
trouble breathing after simple activites
facial and hand twitching
goes from freezing to hot in short amount of time
unstable on feet
chokes all the time
needs constant assistance doing activities. If she is very weak, che cannot move.
trouble holding up neck
extremely watery eyes
swelling of hands, feet, legs and face depending on how tired she is or how much sleep she has had.
My doctors don't believe that my Myasthenia Gravis accounts for my pain, my extreme exhaustion and does not affect one side of the body only. So when I went to the hospital my right side was non functional but my left side was also weak. They just think there is something else that is responsible for the extreme pain of everyday and the weakness. Any ideas folks? I have another MRI in Feb that I want to get the report for so I can compare the notes. I don't understand any of what it said except for the cereberalla tonsils part (that is the Chiari).