Hey Jen,
Don’t let that doctor get to you. I am sorry it was a days trip and a waste of time. He obviously doesn’t know anything about EDS, and I find that most neurologist have that God complex. I think it’s a prerequisite for the job! On a sidenote when I worked at a hospital in Dallas, which is home to a big medical school, my friends and I were walking back from lunch when two neurologist came charging down the hall. They pushed us to the side and said ” out of our way brain surgeons coming through”. Believe me they were rude. Instead of going around us they push between us. They were not one their way to an emergency. They were just being uppity. 😛
I just learned today, from Dr. Diana, that I do have hydrocephalus and you sound just like me. Plus Barbra knows her stuff. I would get a good eye doctor in your area to prescribe Diamox for you. Call that crappy neurologist back and demand they send you your MRIs back. he has no right to them! Find an O.D Optometrist in your area. They can look at the MRIs and your optic root and tell that you have the external communicating hydrocephalus. Maybe you could even see Dr. Diana and her husband. I know it is a trip, but maybe it would be worth it. Or you could send her your MRI’s and pay for a consult. Maybe she knows a good doctor in your area.
I have problems in elevators too. I was wondering if all EDSers have a problem with elevators, because as far as I know nobody else normal does. I wonder if it’s due in part to hydrocephalus. I get faint and dizzy.
Your feet sound like Raynaud’s phenomenon or sign. I have it. It is also seen in RA and Lupus. Another EDS sign and part of the dysautonomia issues.
Hang in there friend there’s a lot of bad doctors out there and I know they get a person down. I learned from years at the teaching hospital that doctors are just human and most of them are not very smart. HEY do you know what they say? What do you call a doctor that finishes last medical school?… doctor! 😛
It is not in your head it’s just part of this disease! I’m praying the Geneticist that you’re seeing is a good, and one that will help manage your EDS. Then you can finally start in some relief! It always feels good to have that validation and the physical documentation that you have Ehlers-Danlos. Then you can be like 😛 I told y’all.
The first geneticist I saw wasn’t so great and she won’t manage all my health issues. All she did was diagnosed me. Now what I’m doing is getting the kids into a different geneticist one that it actually is proactive in the management of EDS. So fingers crossed it’s quite a ways away both time and distance. hopefully, I can get the kids in some sort of preventive treatment plan. My PCP feels I will gain help with my conditions through my kids appointments.
How is your MIL? I wonder if she has EDS? The last I heard. It is now not a rare disease, but a rarely diagnose disease! The latest estimate is EDS affects 1 to 10 percent of the population.
Shonda