Here are things I do know:
1. I have the Intrisic Factor antibody which makes this an autoimmune.
2. I have polyneuropathy in my extremedies because my B12 stayed too low too long.
3. I have permanent damage to my GI track (IBS) because the delayed diagnosis allowed the central nervous system to go unprotected by the myelin sheath for too long.
That is all that I know and all the doctors seem to be able to tell me.
My symptoms started about 6 years ago which means I probably had this issue before that. I had extremely low blood pressure 70/40 and could barely sit up much less stand. I was sent to multiple specialists and was diagnosed by a Cardiologist with Idiopathic Orthostatic Hypovolemia. Which basically means they didn't know why I had low blood pressure. I was put on some serious steroids (Florinef) to get my blood pressure up. Side effects: it may damage your adrenal glands and removes the potassium from your body. It was not a good experience and it didn't work. Back in the ER and now diagosed with "Cronic Venus Pooling". Seriously, it meant that when I stood all of my blood would pool in my legs....so compression stocking where perscribed and stay on your steriods. After my blood pressure tanked, my breathing was going next. Every step I took was like I ran a marathon. I kept telling my doctors that I was in a tremedous amount of pain and could feel my body slipping our from under me. My neroulogist did a nerve study and told me that my nerves in my legs showed signs of neuropathy as if I had been an out of control diabetic. He indicated that I had some cushion around the middle and asked if I had ever been tested. Not real happy with the comments, I went to my GP for a test. He decided to go a different route because he said all of my symptom were pointing to a B12 deficiency. I could no longer think clear and was begining to show signs of dementia. I was at the point where I could not get out of bed. My GP called and told me to get in his office ASAP. My B12 was at 195. Now I am on B12 shots every 2 weeks because for some reason my liver won't store it. My doc also wants my level to stay around 1000 in order for me to heal...Heal what? At this point the nerve damage in my extremedies is permanent. There is no idea what other damage has been done. One neurologist said that it would be a slow road but no guarantee how much I would get back. My cognitive thinking has never been the same. Unless I made an appointment with every specialist out there I don't think I will ever know the extent of the damage that was done to me as a result of the delayed diagnosis.
Has anyone else experienced this?
Thanks in advance for any response.