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Sometimes The Road To Diagnosis Is LONG!

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I have been suffering for a VERY LONG TIME. It has been a life of pain, suffering and "Weird Symptoms," and a crazy cake list of diagnosis. However, after 47 years, I finally have a Diagnosis and The Right Doctor To Handle This New Diagnosis. I can not tell you how exciting this all is. I have a doctor who understands and who know what I "Rare Genetic Disorder" I have been living with since I was born, and how to manage it. It has been a LONG, LONG, LONG Journey and I will share more about my Journey and life with Multiple Invisible Illness and Autoimmune Diseases.

May just happens to be the Month of Awareness for a few of these diagnoses. I will be sharing more about Celiac Disease and Ehlers-Danlos Syndrome. Both can be a bear to get diagnosed and are often Missed for YEARS or a Lifetime.

Here is Yesterdays Update! May 11, 2017, I was Finally Diagnosed by a Geneticist.

YAY! I have a doctor that does not give me weird looks when I tell her about my symptoms. Instead, she puts it on the computer and either asks me more questions about it or tells me to put it on my list to talk to another specialist about. YAY!

I feel like I can breathe now. "Nothing is Weird Anymore." It makes sense with my diagnosis, and I am not an alien. I am getting the help I need now. My new doctor even told me where to go to watch videos and learn about effective exercises where I don't hurt myself! <3 She even explained to me how My Faulty Collagen is Glue that is ALL OVER MY BODY. It affects EVERYTHING. It is a Genetic Connective Tissue Disorder and NOT A Connective Tissue DISEASE. She said I might still have a Connective Tissue Disease and damage done to my body from this, and I need to see a Rheumatologist and a Neurologist too.

You might have no idea why this brings happy tears to my eyes, but it has been too long. I have been a Test subject with meds pushed on me, that in some cases almost killed me. I have had doctors look at me weird, and doctors tell me that they can not help me. I have doctors who might not have understood what I was telling them, and they would tell me it was normal. I had doctors that just made up crazy excuses for some of my weird symptoms. I have had Doctors who were perplexed and understanding but thought I should go to MAYO. Mayo said they could not offer me anything new. I even asked Mayo, what about a REAL DIAGNOSIS?

All I have been doing with organizing my Health History with research and pictures is helping me to get to see the right doctors who have a better idea of what has been going on with my family and me. We just have a "Rare Genetic" Disorder. It is a JOB FOR A GENETICIST. It is some form of EDS {Ehlers-Danlos Syndrome}. We just need to rule out the Vascular form of EDS and Marfan. We are getting to the bottom of it! YES, I can breathe now. And the Rest of my family can get the help they need now.

This Diagnosis explains many other symptoms that can lead to lead to other Official and proper diagnosis. {Like the Mast Cell Issues} and the POTS {Dysautonomia} and The horrific Headaches and Why my Cerebral Tonsil look like they are Hugging my Brain Stem!

Yes, it has been a journey. I am Grateful to have an Official Diagnosis so I can finally get the help I need to manage better!

I am not Clutzy; I am a Zebra. I have a Connective Tissue Disorder known as Ehlers-Danlos Syndrome.

Click Here To Find Out More About EDS.






Invisible Illness and Disabling Conditions can be hard to get diagnosed and seem impossible to manage at times.  You are not alone. Please Reach Out! Please share your Stories & Get Support! We are here for you. @a-grateful-life.com
Thank you! Many Hugs and Much Love,
Tammy

















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