Misdiagnosed multiple times I need answers

Posted by nastashian @nastashian, Jul 10, 2021

Hi my name is Nastashia I’m 23 years old I don’t know who to turn to anymore I’ve been told so many different things from several hospitals been to the ER 6 times within the past 5 months a test was done at a first hospital where I tested positive for NMDA encephalitis serum negative in csf but no one followed up then had to go to the hospital again for the same symptoms they did the test over again and it was negative they said that I could have another autoimmune disorder but when they tested for that it was in normal range but I’m still having these very disabling symptoms such as: dizziness/fatigue
Weakness/pain in arms and legs
High heart rate/ irregular blood pressure
Hallucinations visual and audio
Trouble walking
Pain in back spine
Problems with balance
Vision loss/double vision
Memory loss
Abnormal menstruals/hormones
Terrible headaches that last for hours sometimes even days
PLEASE ANYONE THAT CAN GUIDE ME IN THE RIGHT DIRECTION I WOULD APPRECIATE IT IM CURRENTLY IN ACUTE REHAB BECAUSE MY BODY IS SO WEAK…

Interested in more discussions like this? Go to the Autoimmune Diseases group.

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.

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@Erinmfs

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.

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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

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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.

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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.

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@johnbishop

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.

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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

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@nastashian

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

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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.

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@johnbishop

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.

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

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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.

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@Erinmfs

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.

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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

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@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?

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@becsbuddy

@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?

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My mom has helped with caring for my son but I’ve been trying to get help from the government I can’t really get any disability benefits unless I have a diagnosis

which I do but it’s not clear I say this because back in March a test was performed on me without my knowledge it said I was positive for anti NR1 antibodies which is NMDA encephalitis the hospital I went to thought I was crazy or I was making things up that didn’t happen to me

I found this out by getting my medical records but before I got my medical records I had seek help from multiple specialists spine specialist/neurologist/rheumatologist and they did test and saw nothing medications aren’t helping me they are going based off what that hospital said about me and it’s hindering me from getting the help that I need and have been seeing for the last 6 months

I was just seen at another hospital June 10 stayed there for 25 days left on July 2nd they repeated the NMDA that I found in my records and it came back negative they said it’s unlikely to have a false positive but in my case anything is possible and I’m now in acute rehab and they are trying to treat the pain I wasn’t able to do therapy today because I could barely move anything everything in my body hurt

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@Erinmfs

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.

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I went to ER for broken ribs (7) and they found lots of other issues that they wanted me to follow up when I was out of the hospital. Most of us with weird symptoms have a list of specialists. All of your symptoms may not be connected to one diagnosis. For joint/back pain, go to orthopedic for images and then a referral to Physical Therapy to help with balance, muscle strength and joints. Visit an ophthalmologist (DR) for issues with your eyes. Switch to a non-processed diet, avoid sugar and aspartame, preservatives, moderate potato, tomato, wheat and dairy. You may notice others that you need to avoid; Mediterranean diet, AIP or Terry Wahls have good recipes. Make sure you get some movement, each day. There are plenty of moves that can be done in bed. Finally, make sure you are staying hydrated and eating enough food – lots of time when we feel ill, we stop doing this and it gets worse. You might request a panel for autoimmune disease, like Lupus, fibromyalgia, MCTD. Diagnosis and meds will help, but diet and movement are huge, also.

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