I haven’t hear of hardly anyone that has OI and not POTS. Other then Greg Page from the wiggles :)Thank you !
Hon, I am leaning toward your OI possibly being your first symptom of POTS (or perhaps your most prevalent). With myself, I noticed gastroparesis first, then OI. It was years before I began to notice the other symptoms and signs. Unfortunately, as time goes by, and without proper treatment, we can go down a spectrum of conditions over time. I will do everything I can to keep you from progressing, OK? That is what my research is for. A huge “thank you” to Palomino — yes, please start reading through The Driscoll Theory, Parts 1 and 2. Let’s get a jump on your symptoms and stop them dead in their tracks. OK? Big hug, Diana
Thank you so much for all your research I am very grateful! I am reading it all and trying to take it all in. My biggest question is if I had a normal brain mri does that rule out problems with cerebral spinal fluid? I do get a sore neck and shoulders all the time but, never would have related it to anything. My ears do seem a little watery in the morning as well. I have been treating my symptoms naturally for a year now and have made progress but, here I am a year later and a lot of my life consists of living on the couch. As all of us feel, I just want to get better for my husband and children.
If you don’t have time to respond I will understand, I just thought I should put it all out there:
I am 30 years old.
I was born with too many red blood cells and I know they treated it some how.
I have a huge history of extreme allergies and asthma as a child.
Teenage years I felt mostly fine.
Pregnancies were very hard on me and especially the second one. I now know that my symptoms were very OIsh. After pregnancy it went away. I then was hospitalized for a week with the worst case of mastitis the hospital had ever saw.
about 3 years later after extreme stress and feeling a little sick here and there I had a sudden onset of these OI symptoms. I was bedridden the first month and I have been sick ever since.
My biggest symptoms are: Feeling ill everyday, nausea, light-headed,low blood pressure, fatigue,pre-syncope, headaches, optical migraines a few times a month, extreme sensitivity to heat, sensitive to the light, I also have bladder problems for over ten years now which I believe is probably IC but never been diagnosed. Oh and my joints are very hyper-mobile but, I do Not have stretchy skin.
My Dad has an auto-immune disease (reiter’s syndrome).
My Grandma died of bladder cancer.
Also do you think any of the medications you mentioned in your book would work for me?
Thank you for your reply above as I know you are a busy woman. Hugs to you for everything you do! You are truly a blessing.