Newly diagnosed and trying to figure this out

About a year ago I started having really bad pain all over and every joint in my body was stiff all of the time. I went to a rheumatologist and she thought I had fibromyalgia. I was in so much pain all of the time and I missed a lot of school because of it. My doctor told me it was psychosomatic because of my past. I had no idea what that meant and didn't care, I just wanted better so she put me in physical therapy to try and help. I went their maybe three or four times and she told me that i needed to see a neurologist because every time I move my hands or legs, stretch them or do normal exercises they twitch like crazy then randomly spasm for like a half hour after. My doctor looked at me and said that there was no reason for her to send me to a neurologist but when my physical therapist mentioned a physiatrist for pain management she gave me a referral. i went to mary freebeds 10 week program but slightly before that I started having seizures, blacking out, forgetting who and where I was, and forgetting basic communication. I had stopped seeing my doctor because I had moved and she wasn't helping me very much so maryfreebed sent me to get an EEG which they said was fine. I never got any explanation to why anything was happening but sometime after the seizures started my pain eased up a lot and then after 3 months of up to 6-7 seizures a day, they just stopped all at once and my memory has came back a lot but I am still struggling with it. After the seizures stopped, my legs started going numb and tingly, I've always been clumsy but I started falling a lot more than normal, I have problems moving them and sometimes they just give out on me, my right arm has started going numb just like my legs but doesn't last nearly as long, I have a lot of strange sensations and most of them are painful. My vision is now blurry most of the time, I still struggle with normal communication skills and I see purple a lot. I got a new primary care like 5 mins from where I lived and she sent me to a neurologist which I seen for the first time a few weeks ago and he diagnosed me with functional neurological disorder and is sending me to a neuropsychologist. My neurologist is connecting with my psychologist and primary care to see what they think of the diagnosis. Are my symptoms going to continue to build off of each other like this? Will they ever improve? I know not many doctors are aware of this diagnosis but is their a specific specialist I should be seeking? I am getting ready to start college in the fall and and hoping to get a job this summer should I expect these symptoms to get worse, stay the same, or improve?

4 Replies

  • I ahve been fighting s, just diagnosed jan 7 2015. You will become your own psychologist, phys. assistant, your knowledge of what you have will blow away any Dr who has no clue of FND. There are a lot. Stanford neuro science ctr is very good at this Dr kim Bullock Neuropsychologist and Dr Sarrada Sakamuri. Almost everyday is different, right now I am focusing on sstaying out of wheelchair and also trying optomemtrist techniques to try to refocus eye problems. I have had to reab myself in so many ways I couldn't begin to tell you. Never Give Up fight the fight!! see "The Hidden World of FND" by FNDHOPE. org

  • Thank you :) I have been looking into FND a lot because now I have something to try to wrap my mind around and I'm realizing how different and unique it is to everyone diagnosed. It's scary having something that doctors don't even know much about but I think all of us could be a learning opportunity for doctors rather than an FND diagnosis and then we are left seeking different strategies to try to help symptoms basically on our own because they don't know enough about it. I will never give up no matter what symptoms occur or how difficult doctors are down the road and it really helps knowing that I'm not the only one :)

  • Hey. Yeah it's crazy and weird and frustrating how vast and insane some doctors can be. I understand and sympathise with A GP who has thousands of things to look out for. My cousin is a doc and he had to look up FND and even then he found medically there's not a lot apart from rehab and talking.

    Today I saw a nuerologist as I am in hospital due to a relapse. He told me things would settle when life settles lol so again people think it's a head think and about life and what's occurring!

    That's just tosh! So don't take it in.

    I'm 28 and refusing to be labelled as it being all in the head! I know my pain and difficulties walking.. I would rather work as a funeral assistant than be struggling to walk to bathroom.

    Don't let someone dictate how you will be. :-)

  • I went from wheel chair to crutches to walking sticks and relapsed with a weird 12 hour blackout in memory... And then couldn't walk properly de to leg numbness and paralysis ending in a fall.

    I've been told FND can be a progress and relapse disorder ...

    Learn to live each day hour by hour and learn what your triggers are when you do relapse.. Then just avoid it again

    I found I was doing too much physical activity in order to get well.. I was swimming 3 times a week... So doesnt make sense to me, but just don't push yourself too much :)

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