Gaslit, Misdiagnosed, Then Heard: Living With MCTD, Small Fiber Neuropathy, and Dysautonomia
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Hello All ..it is me again...the woman who was MISDIAGNOSED with FND, who in sharing my story has discovered that it is not uncommon for people to be MISDIAGNOSED with FND.
Again, I want to make sure I am not here to be disrespectful or offend anyone. I realize there are many people on here that actually do have this condition. I am here to help. I am here to share my story in case there is anyone else in this group that suspects they have been MISDIAGNOSED.
I am also going to start sharing some info, questions, things to consider. Did you know Mixed Connective Tissue Disease can attack the Brain, and Nervous system? This can cause Aseptic Meningitis ( Autoimmune Meningitis) ... Which is exactly what it sounds like. Look it up.
Autoimmune Epilepsy is also an accepted diagnosis by the Epilepsy Foundation also by the way. I just wanted to share that little bit too. Aseptic Meningitis can mimic MS. How many of you were checked for MS in the beggining of your medical journey?
I was Gaslit for years by one of the best medical institutions in the US. I was told to go to the psychiatrist and psychologist. Did you know that mixed connective tissue disease can cause a neurological condition called small fiber neuropathy? Small Fiber Neuropathy can cause many of the symptoms FND does.
Yep ..and also Dysautonomia (autonomic nervous system dysfunction) can be caused by mixed connective tissue disease and or small fiber neuropathy. I share this all, because I experienced it. I have done a lot of research about it.
I was properly diagnosed by another one of the reputable medical institutions in our country after moving to another state. The neurology department that Gaslit me never tested me for neuropathy, and ignored the findings of their own rheumatologist that had put down Mixed connective tissue disease is a probable diagnosis.
If you have any doubts that FND is a proper diagnosis I hope my sharing encourages you to get a second opinion. My quality of life has improved significantly since being properly diagnosed and properly treated. I don't have seizures anymore! I don't pass out anymore!
I hope for everyone suffering through all of these horrible scary symptoms more good days than bad ones, quality compassionately medical care from professionals that want to work with you. My rheumatologist said that to me at our first appointment... He said " I look forward to working with you in healing your mixed connective tissue disease" .
I realized in that moment that I believe that a quality physician is someone that works with the patient. We after all are the experts at what is happening to us. If a Doctor doesn't listen to you or believe you find one that does.
Just my advice from my experience, and from the countless stories I have heard like mine from others that were Gaslit, and neglected. I am here to help, and I mean no disrespect to people that have this condition FND. Please pardon any errors in this as I was using voice text.
Also, for those of you who have not read my previous posts, I am diagnosed with mixed connective tissue disease, now lupus, small fiber neuropathy, dysautonomia AKA autonomic nervous system dysfunction, gastroparesis... And some other stuff. 🥰
Glad she finally got answers and that treatment actually helped.
What bothers me is how often people in these stories have to spend half the post apologizing so they don’t offend anyone who has an FND diagnosis. You shouldn’t have to do that to say “they missed something treatable.”
That reflex, protect the label first, then listen to the person who is still sick, is the problem. A diagnosis is a working explanation, not a loyalty test. If rheumatology findings were ignored and neuropathy was never tested, saying so isn’t an attack on people who do have FND. It’s advocacy for patients.
People who are ill should not have to soften their story so a diagnosis stays comfortable.