Still Learning

Still Learning

Hi Everyone,

I'm new here and I started having spells in December of last year, loss of balance, dizziness. I saw many doctors, spent days in the ER, days overnight in observation and a week in the hospital at the end of January. I've seen Neurologists, Primary doctors, ENTs(Learned I have hearing loss and that I'm super motion sensitive), Eye Doctors including a retinal specialist (I found out I have macular degeneration at 36 years old!).

Finally I went through Neuropsychology testing and it came out that I have Functional Neurological Disorder (Conversion Disorder w/ Non-Epileptic Seizures) and Somatic Symptom Disorder. This is all on top of the other chronic health problems I have currently. I have PTSD, Anxiety, Depression, Interstitial Cystitis, Chronic Migraines, Chronic Myofascial pain, Chronic back pain, Hypothyroidism, Insomnia, IBS with Diarrhea, Fibromyalgia.

My symptoms have now turned into my toes and legs trying to curl up in the wrong directions, non-epileptic seizures, confusion, eye twitching, word-finding problems, appetite changes, memory issues. I feel like I'm in a fog a good majority of the time. I also have a level 7 pain the majority of the time so I can't sleep regular hours or even concentrate at all.

My doctor said no multitaskng and I lost my job because of it. I've worked in customer service my whole life and now I can't do it. So I applied for disability. We are still waiting on that one.

I'm still learning about all these things that go with FND. I'm glad I found someplace I can ask questions and learn more.

Z

4 Replies

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  • Hi Z, Glad you found us too. It does sound like you have so much going on. You are at the right place for support and people who genuinely care. Ask any questions or just vent if you need. I always remind people you are never alone. WE are all in this together. God Bless, and welcome....Cathy

  • Hey there Z.... 🤗. Welcome to the group! It's fantastic for support! You can rant, rave, scream we all understand!!

    Here's to a better day today 😀

  • I'm louisa by the way 😜😜

  • Zful23

    Thank you for posting. Your age is too young to have all this going on. Mine was just getting started at your age and I am now 24 year veteran of this battle.

    Unfortunately, my youngest now also has this diagnosis for eight years of symptoms and she just turned 30.

    We understand the frustration and the need for treatment.

    Does anyone try to look at the spectrum of your symptoms from a broad perspective?

    Maybe in your next post you can tell us more about the level of care and diagnostics you receive and what you would like to see happen going forward.

    It seems like medicine could do more for you. My best wishes for a better day.

    Dan / Seattle

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