Undiagnosed still but something is wrong
Hi,
I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but admit there’s something but tell me they can’t help me and to keep appointments with specialists. All I for sure know is I have a pituitary tumor. What do I do? It’s getting hopeless and taking toll on me mentally b
My daughter has the worst symptoms, out of me and her younger brother. We have several overlapping symptoms relating to my daughter. Yes, the medical community put my daughter and younger son into foster care to see if she would magically get better if she was removed. They also damaged my career, telling me that I was being neglectful for taking my daughter with obvious symptoms to the doctor. The doctors dismissed us as well. But they were the ones who sent us around to different doctors. Apparently, it is not right to ask questions about diseases that could be affecting us. This same facility also has a habit of targeting minorities and making an example of us. To this day, my daughter's severe progressive muscle weakness affects her entire body with a rapid progression. She is now 22. It took a proactive neurologist who actually chose to move quickly and do something, and an out-of-pocket autonomic specialist to put the pieces together. More genetic testing will be underway soon. She now has a referral to the rare disease clinic in San Fransico.
, I am so very sorry your children were taken from you like that! I can't believe (except, sadly, I kind of can) that that was the solution people came up with when they couldn't diagnose your daughter's symptoms! I do hope you were able to file an official complaint, although I understand if you chose not to do so, especially since a number of years had passed.
I am glad you fought back and that you finally found a doctor who would listen. I do hope the genetic testing is illuminating and gives your daughter's doctors some clear direction as how to treat her condition (and covered by insurance, as I know genetic testing can be expensive).
And I do hope the testing is helpful for you and your son as well, since there does appear to be a genetic component to the symptoms you are experiencing.
Thanks for adding to this conversation and please update us on your daughter's situation, as well as your's and your son's, if you feel comfortable doing so.
Best, Erin, Team Member.so far I have tried hiring an attorney but looks like he may have run off with my money. No one wants to go up against a medical facility, especially this one. I'm definitely feeling like there is no justice to be found in our situation. I will be seeing my daughter's proactive neurologist. Hoping he can help. We also have genetics that are being tried again. And my daughter has a virtual appointment in July with the rare disease clinic in San Francisco. It feels like there are any results and possible treatment anytime soon. It is, so hard to wait. However, God is, still good and I don't give up very easily.
A persistent neurologist who saw me for 3 years before my positive lab work and repeat that work appeared for myasthenia gravis.
Persistence in a doctor is so important... I am glad that your specialist was able to finally diagnosis you and confirm the diagnosis.
, perhaps your specialists will learn what exactly is happening with you, too? Hang in there! If your mental state is suffering too much, please consider getting psych help to deal with the stress. We are only human...and we owe it to ourselves to do all we can to lessen our suffering. Hugs.
Gina (Team Member)
it took two years to get it right, but me not giving up and doing my own research to find out why I hurt for no reason.
Hi
, without knowing what symptoms you are experiencing, and which doctors you have seen, I tried looking for "who treats pituitary tumors", and I found this: "Endocrinologists, neurosurgeons, and nose and sinus surgeons are specialists who treat pituitary tumors." If you haven't seen these specialists, maybe have a conversation with your doctor and impress on them the necessity for referrals to professionals who can, hopefully, help you. - Warmly, Donna (team member)
