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robynneParticipant
Thanks, Dr. Diana! These feelings of “pressure” in my head and eyes are pretty bad. Some days it hurts even to wear my glasses (perhaps because of sinus pressure). I am going to try Zyrtec everyday. I already give it to my dog for his allergies! In learning about the theory, I keep thinking about my little brother. He had a very large head as a baby and an unexplained seizure at age 3. He has a very EDS body type, the longest hypermobile fingers ever! If I end up having EDS I am going to suggest he get checked, too. I may just be able to make it out to Texas! Interested in learning more about the specialist you mentioned. 🙂
robynneParticipantOpps, forgot to add….
Yes, I do see my pulse. Usually in my stomach. I do not have whooshing sounds in my ears, but I have frequent ringing in the ears, especially as I’m trying to fall asleep.robynneParticipantHi Dr. Diana,
Well, my hope bubble has again burst! The opthamologist I saw yesterday was HORRIBLE. After looking over my medical record he came into the exam with his mind made up about me. He told me no doctor is going to be able to help me and proceeded to ask me very inappropriate questions including, “Oh, so you’re married? How’s that going? Do you like your husband?” He told me that I was stressed or anxious and making a big deal about small symptoms. He was also 40 minutes late for the appointment (I was his first patient) and said nothing about being late. He only spent about 10 minutes on my eye exam, during which time he told me that my eyes were dry and that my eyelids were floppy because I rub them too much (I don’t). He told me the pain in the eye is normal and that headaches are nothing to worry about. I’m going to try to see if I can see the urgent care doctor again since he was really on it. This experience also taught me to NEVER go in an appointment alone. I think if my husband was there Mr. Creepy Ponytail doctor would not have said half the things he did! I go to cardiology tomorrow for my orthostatic intolerance. I really want a tilt table test so I can show them what happens when I stand for more than a few minutes.
July 19, 2013 at 4:12 pm in reply to: My Dr. doesn't know about POTS or autonomic disorders – please help! #3923robynneParticipantUpdate!
My neurologist at Kaiser has agreed to give me a referral to an outside doctor. (This means my insurance will cover it). I really didn’t think this was going to happen, because my doctors have been so uninterested/unconcerned with me. I am finally making some traction and even though I’m not there yet, this small victory has given me new hope of getting a correct diagnosis and HELP for my symptoms.
I know a neurologist in residency at Stanford (previously at UCSF) and asked her if any of her colleagues were experienced with POTS and autonomic disorders. She recommended one neurologist, Dr. Safwan Jaradeh, MD. at Stanford.
http://med.stanford.edu/profiles/neurology/frdActionServlet?choiceId=facProfile&fid=25081
The referal process takes a few days, and then there’s getting in for the appointment with Dr. Jaradeh, but the ball is rolling!
robynneParticipantHi everyone,
I was lucky enough to find Dr. Diana’s videos online and feel SO fortunate to have found this forum. I have been very ill since June 3rd with so many body systems affected, the most debilitating has been peripheral neuropathy, walking difficulties including a foot drop, and constant nausea with light-headedness. I have fainted twice and have somehow lost 10 lbs after spending a month on the couch. I have been through tons of tests at Kaiser, but have had very little luck getting a diagnosis. I have gotten very good at waiting, staying strong, and advocating for myself despite the dismissive attitudes of my doctors.
I clicked on this link because I was curious what blue sclerae was. I was shocked to see the photos, this is exactly what I woke up with the other day. I sent images to my doctor, in the event he thought they were relevant to my symptoms. He replied saying he would ask an older doctor he works with, but that was a week ago and still no reply.
So my question is, what conditions is blue sclerae associated with and is it a clue toward diagnosis?
My photos are not attaching because they are too big. I will try to compress and upload them separately. Thank you SO much for caring enough to read this. Any feedback is GREATLY appreciated!
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