Misdiagnosed with FND

[acalandra995]

Hello all,

I joined 6 months ago when suddenly my life changed. I got the whole FND diagnosis and KNEW full heartedly this diagnosis was not what I was going through. It wasn’t until I saw an opto neurologist who sent me for genetic testing. I have Ehlers Danlos, POTS, cranial instability, and this all ties into EDS. This is all new to me, even though I have spent a life time dealing with complications we had no idea as to why they occured.

Never stop advocating for youself. It has been one hell of a journey fighting through this nightmare of not being taken seriously and dismissed by doctors. Best of wishes to all. I will be leaving this group in the near future, and joining support groups tailored towards my diagnosis now.

Xoxo! - be strong

[Purple-]

Thank you for sharing is good to hear somebody has one the battle of not been believed, now you can put a good health plan in place now you know what your fighting 💪🏻

[Mic67]

Thanks for sharing. So important people come back to share these experiences in order to encourage others not to give up seeking answers. Good luck getting the help you deserve.

[Tewa]

Thank you for sharing your experience and the fact that your persistence paid off! What a relief to finally know your dx's. I too am not accepting FND or M.E. as the only things that are wrong. I am encouraged by your post and remain determined not to give up my search for help. Wishing you the best.

[DonandLisa]

You are lucky that at least they have something

[Moses4]

I am so happy that you found out. Praise God. how long have you been sick before you found out the official diagnoses? its been going on almost 2 years for our son. I had to fight to get genetic testing for him. and we fly out in April to Ft .Sam Houston. we have been treated so rude, judged and looked down on from only doctors and some nurses a lot. My sister had Lupus and died about 2 years ago because of complications from that, I also have autoimmune and our son is always in CP and CI every single day and is homebound from school. He has seizures and anything he does for just a average half school day would trigger a seizure because of the intensity of the chronic pain and chronic illness would increase , just for half a day. his cheeks have the butterfly rash just like my sister. so I have never felt he has had this, all they would do is ct and mri test of his brain. I would tell them , just because he has seizures doesn't mean there is nothing going on inside his body. my goodness. I am sooo happy you found out though. its like finally being relieved to know what is going on.

[Hidden in reply to Moses4]

You can request that your son is tested for full range of autoantibodies. If he has Lupus then it is likely (but not absolute) that he will show positive for ANA and anti dsDNA in his blood. You can look these tests up online and see what they stand for and see significance of all other autoantibodies that might show up too.

Neurologists don’t usually know anything about rheumatic diseases. Mine admits this and consults with my rheumatolgist to check everything before trying to work out what is functional overlay and what is due to the disease itself.

There are some rare rheumatic diseases requiring doctors who specialise in childhood Rheumatology as well. I think I’d look out for paediatric specialists.

[Momofson in reply to Moses4]

Hasyour son had antibodies tested for autoimmune encephalitis? Has he had thyroid checked, full papal plus thyroid antibodies?

[DonandLisa]

FND is absolutely ruining our marriage

[Chaz61]

My son as pots and he didn't have a DNA test he had other test a table tip test were he layed on tabble top and was tipped up side down

[FunctionalEmma]

Glad you finally got to the bottom of what is causing your symptoms. Best wishes And thanks for sharing