Hi i'm LittleRay,
I have a very rare genetic disorder that is complicated by many things.
I have been diagnosed with the following by various doctors in a search to find a cure or at least an answer to why I am so different.
Some of these may be misspelled I appologise for the poor spelling.
1,Precocious peubirty , diagnosed at age 8
2. Mccune Albright syndrome, age 14
3. Acute right angle glacoma age 20
4. pancreatic cyst removed over 50% of my pancreas to get it out in fall of 2001
5. Diabetes followed, it was left undiagnosed until 2003
6. I found bony lumps on my eye sockets, and jaw, suspected other sites. The doctors findings where confusing to read at best, and to this day I still have one doctor stating that it is FibrouseDysplasia and another stating it isn't
7. These are all blurred into a group as they have all been going on slowly getting worse over the past decade, Muscle weakness, bone pain, joint swelling, cracking and popping of my joints and even some mid shin popping, daily. a dizziness that comes and goes, a slight feeling of when I try to stand straight on my own that I am on a ship or that my body is moving slightly to my heart beat.
8. in 2006 - 2007 over the course of 3 opperations my Ovaries, and uterus where removed along with cystic and fibroids ranging in size from a pea to a grapefruit, also at this time a mass the size of a hens egg was removed from my breast. The masses did not show up on MRI< CT< ULTRASOUND< OR MAMOGRAPHY for any of the masses.
My health continues to decline, I have also ben diagnoed with Lichen schloriis since having the full hytorectomy, and the replacement estrogens do not work for
me.
9> Most recently I've been having flashes of red skin, heat and sweating every time I eat anything, and on a few occasions I have been rushed to the er, with a choking sensation in mid chest region with pressure on my breast bone. though I am a very calm person the diagnosis by the doctor who did not read my medical chart was "Anxiety" even though on all ocassions it as while eating food in a calm relaxed setting
I currently have no insurance, I can not find a doctor, I have had more than a dozen doctors refuse to take me as a patient, Stating " I am sorry but I can not take you as a patient because your case is too complicated" I have been offered no prescription to alleviate my pain, nor any real diagnosis, or any type of luck in truly researching my health. In the last 4 years I've gone from somewhat healthy, helping my husband with our flooring business, able to lift nearly 150 pounds with my 4ft 10 inch tall frame, to now I can barely lift a gallon of milk, I injure my self with just daily activities such as picking up something off the floor can hurt my ribs to the point of going to the ER with trouble breathing. My list of health issues is much longer than above mentioned but those are the main problems.
Desperately seeking help, LittleRay