Misdiagnosed multiple times I need answers

Hi I'm sorry to hear of your struggles. I'll let a mentor tell you that we are not doctors here, we are a group of patients who utilize this to Connect with one another. My one basic piece of advice is to stop going to the ER and the make an appointment with a neurologist most likely, the ER should have given you a referral to a clinic or physician for followup. Going to the ER keeps you alive, but often it doesn't provide an accurate diagnosis.

Thank you for letting me know this it’s actually my neurologist who told me to go to the hospital because they would run all the test needed I was seen by neurologist/ rheumatologist while at hospital and they still have no idea I have a very complex case and it’s very disabling

I have an autoimmune disease, but it took a neurologist 2 years to run tests, and re-run tests to diagnose it accurately. I too went to the ER alot, but ultimately, an ER does not manage your case and provide an accurate diagnosis.

Hello Natashia @nastashian, I would like to add my welcome to Connect along with @Erinmfs. You will notice that we removed your email address from your post to protect your privacy since Connect is a public forum and can be found by anyone on the Internet. Members can share contact information using the private message feature of Connect - https://connect.mayoclinic.org/get-started-on-connect/#send-private-message.

Sorry to hear that the doctors have not been able to get to the bottom of what's causing all of your symptoms. You may find the following discussions helpful as they both seem to share a lot of the symptoms you listed.

-- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/
-- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Have you considered seeking help at a major teaching hospital or facility like Mayo Clinic that provide a multidisciplinary teamwork approach to diagnosing and patient care? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Do you think that I should see if I can get into the complex care program through Mayo Clinic I know it’s the weekend so I would have to wait until Monday also thank you for removing my email address I am just really tired of going to so many different doctors I have a toddler to take care of and I’m not working so I have medical bills on top of not having a clear diagnosis makes it hard to get any help from anywhere

Natashia, I think you get the same treatment as the complex care program going through the regular appointment page or numbers here http://mayocl.in/1mtmR63. If I'm not mistaken the Mayo Complex Care Program is directed at companies for their employee health care - https://www.mayoclinic.org/complex-care-program

If it were me, I probably would try to setup an appointment as soon as I could.

Thank u I just did a coordinator will call me in 3 business days I appreciate your help

Natashia, I think you'll do better to have some insurance. I see you say you're not working right now. Healthcare.gov can help you with the process of acquiring insurance, even if you are not employed.

Oh no sorry I have insurance through my job I’m on FMLA but no pay so when it comes to co pays and doctors visits it’s really hard for me to pay because they don’t bill the insurance but thank you for that advice as well

@nastashian Your case sounds a lot like mine before i was diagnosed. The ER only treated me for dehydration and sort of brushed me off. I was really sick and almost non-responsive when my husband took me once more. I remember nothing of being admitted and the first days of my hospitalization. The doctors finally found lesions from an autoimmune disease on my brain. I’m very glad that a coordinator will call you!
Is there someone who is helping you while your on FMLA?