@jostrowski74
I’m sorry this is happening to you. I’m a retired RN/Charge Nurse & know all too well how some patients are gas lighted. My daughter has been ill for the past 3 months. Started as a sore throat & progressed to include ear infection, sinus infection & pneumonia which have not resolved after 4 courses of antibiotics. Even more concerning are the other symptoms that have developed including extreme weakness & fatigue, brain fog & confusion, extreme pain both muscular an bones even more so, burning air-filled blisters forming on her hands that then sloughs off & starts again, numbness in her hands & feet, muscle spasms, balance issues (has fallen) severe vertigo, focal headache, passed blood clots in her stool (tho this might have been caused by the prolonged antibiotics, sleep disturbances, and on & on (3 pages of symptoms & very important to bring these to every appointment.) Just this past week, she was found on the kitchen floor by her son. She was awake but not responsive initially. When she did respond, she was confused & slurred speech. Looked very similar to a stroke. Paramedics brought her in where a stroke was ruled out. She was kept overnight for observation & pain management. Small rural hospital without specialist. Mind you, I’m living abroad but acting as her advocate & attend every doctor appointment by phone. Also communicating with her PCP using MyChart. I had her PCP contact the ER doctor to recommend the referral as she has already ruled out “other things.” All information is in our EHR but it’s a sad fact that doctors don’t always refer to it.
Keep track of everything. I think it’s also important on where you choose to had seen. We’ve chosen a clinic associated with the U of M as accessing other specialist & diagnostic testing is all there. I will try my best to get her into Mayo if I can.
So after 3 months & 8 doctors (one of whom told her she was “just depressed”) finally a referral after she’s collapsed. I understand that rule outs must be done before a referral but damn! It was so obvious that this was something much more involved than a sinus infection. She’s now lost a job she loves & no PTO. I will continue to advocate for her.
My advice to you would be to keep an up to date symptom list & bring it to every appointment. Hand it directly to the doctor to ease discussion during the short amount of time you’re given. Ask that it be added to your chart. Bullet point every symptom & go through each item with the doctor. Access your MyChart. Keep track of your abnormal test results & what they mean & what’s been ruled out. For instance, they’ve ruled out Lyme Disease, Epstein Barr, CMV, Histoplasmosis & all fungal sources, mono, etc. I often plug all symptoms plus abnormal lab values into google search ‘ AI gives very good information on what might be happening based on the info you put in. Educate & advocate. If you’re not happy with the clinics you’re being seen, consider a major medical center. Honestly, I sprang for a hotel room for 2 or 3 nights but during those 3 days I saw a half dozen specialist, had all lab work done, a Dobutamine stress test, all cardiac testing & even angiograms….diagnosis& treatment started within 3 days. Pretty impressive.
I wish you all the best & hope you’ll find the answers.