EDS+whiplash,may need brain surgery

Life of a Zebra:
     "When you hear hoofbeats, think of horses not zebras". 

Please help me get healthy for my son; I dont even know what healthy is! But my son needs a strong and healthy mom.


I'm a 27 year old disabled mom with a rare disease called Ehlers Danlos Syndrome type 3- Hypermobility. It's a multi-systemic disorder meaning it effects in severe cases like mine almost every single body system. It's caused by a defect(s) in connective tissue. Collegen is mainly effected which the body contains about 85% of! 

I remember the pain started around the age of 7 which was joint pain mostly and muscle I also had panic attacks. By age 15 I woke up to my knee being dislocated during my sleep and was told I had "hypermoblity syndrome" and that I would grow out of it  but it only progressed. Leading to multiple dislocations and injuries as well as many more diagnosies. The pain only worsens and the ability to function get's harder. 

All I have ever dreamed of doing was becoming a Dr or Pharmacutical researcher to help all the Zebra's out there! and those with invisible illnesses!! <3

 
this is only tenitive until I have my surgon look at it.
 But I looked at my MRI results and spoke with some people very knowledgeable in the field as well. (I can read an MRI) This one is of my brain. On Monday I will get an official report and I'm really hoping I;m wrong but it looks like there are a few major post traumatic problems.

Possible retro-flexed odontoid with a reduced clivoaxial angle in the brain and also possible Chiari Malformation when laying down type 0. when standing if I ever get one I wonder that it will say.'

To fix these issues that I will be addressing on Monday plus possible tethered cord and compression of the anterior brain steam compression.
I am both excited and scared for Monday. Plus I didn't make the appt my dr called and asked me to come in! so we will go over the EEG which was sent to Rochester so I am assuming it was abnormal as well as the EMG.

hoping for GOOD NEWS on Monday not bad but still scared

CURRENT DIAGNOSISES:

Ehlers Danlos Type 3 (hypermobility)

Cervial Cranial Instability
Dystonia- post tramatic from the accident& 3 bulging disks

Dysautonomic regulation.
Fibromyalgia
Chronic nerve pain from my c section
GERD caused by stomach acid entering my lungs

Which causes bronchospasms which make it hard to breathe. It's also caused by mast cells releasing irrigation substances in to my lungs which is an additive effect

ADD

PTSD

panic attacks

Depression

POTS (post ortho tacnicardia syndrome) its like orthostatic intolerance (OI)

Chronic muscle, bone and nerve pain for over ten years

Frequent sublocations And/or dislocations of my kneknees, hips, shoulders, neck vertebre, and fingers and toes as well as wrists.

Migraines, cluster headaches , tension headaches, and a headache of which I don't know that's very intense from the accident

Gastroparisis

Last year I suffered two months from an ALC tear of the right knee after only trying to from standing position to sitting on the grass. My knee healed poorly but did after 2 months or more in a leg imiblerizer last summer.

Right knee has Bursitis

(all  knee issues are in my driving knee as well which was damaged worse in the accident)

Endocrine problems in which I'm working on a diagnosis

Chronic fatigue syndrome

Blood flow and supply problems from leeky blood vessels, blood pools in the legs causing POTS or OI. It also effects blood supply to my entire body because the connective tissue is to lax from the mutations causing issues with all bodily systems.

Lower back pain

Nodular Fasciitis : a benign soft tissue lesion most commonly found in the superficial fascia. They are painful normally on my legs they start under the skin then can break through.

Gaglion cysts which are VERY painful normally on my hands or feet but can be any where.
And
Narcolepsy 


Obstructive sleep apnea!

Gentle Hugs <3 

RARE DISEASE DAY IS THIS fEBUARARY 29TH 2016 AND EDS AWARNESS DAY IS THE MONTH OF MAY! 

SUPPORT THOSE FIGHTING BY WEARING YOUR FAVORITE PAIR OF "GENES" ON FEB. 29TH AND THE RARE DISEASE RIBBON! ALSO AT THE LINK BELOW YOU CAN FIND TONS OF INFO AS WELL AS MAKE YOUR OWN PHOTO TO MAKE AS YOUR FACEBOOK PROFILE PICTURE TO SHOW YOUR SUPPORT! JUST LIKE MINE!  http://www.rarediseaseday.org/association/14