Hi, my name is annhorst01!

annhorst01
annhorst01 Community member Posts: 0 Listener
edited February 2022 in Rare, invisible, and undiagnosed conditions
Hi Jade, I was diagnosed with Spastic CP in all limbs at the age of 53 by the Chief of Neurology at UCSD, again by the Chair of Neuromuscular at UCSD, and again by a Neurologist at UT Health in TX. They ruled out MS although I have several unique MS symptoms. But brain MRI is normal. They can't see the CP on MRI. I was also diagnosed with Fibromyalgia by the Rheumatologist at UCSD and it shows up more often in the Doctors notes than CP does. I have hyperreflexia in a very big way and one neurologist noted Babinski and two mentioned clonus. My diagnosis frustrates me a ton because like you, my health difficulties have been discounted by employers, team members, family members, the community, etc.  I was also discarded by my husband of 20 years because of it. He grew tired of me.  I ended up homeless until i was approved for disability. But life has still been really hard.  I had to move away from my kids, one still in High School because I could not afford to live in San Diego. I am now in TX. Alone, but I have felt alone for so long, it's just easier to hide now.  I don't know if I really have CP or something else. Why can't they see the CP on MRI? And i heard so much about FM not being real for so long, that I don't tell anyone I have it out of fear that they will just discard it and assume I am just a complainer and that they are so much tougher than I am.  Anyhow, I wanted you to know you are not alone.  I ditched my abusive employer/team thankfully and went on disability.  I got a severance pay package but it didn't last long in San Diego.  I work part time as a substitute teacher and love it. No computer work.  I also started an online directory of minority and underserved small businesses but tbh whenever I work on my site, my muscles and arthritic joints freak out and I need a week to recover.  Prayers for you as I can relate  . 

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    Hello @annhorst01

    Welcome to the community, thank you for writing your first post and explaining about your situation. 

    At the start of your post, you said "Hi Jade". I just wanted to check if you have posted deliberately on the online community or whether your message was intended for somebody else. have you been in touch with our helpline?

    You clearly have been through a lot, which I'm sorry to hear, but hopefully taking part here can help you feel involved in a community and supported. Feel free to have a browse around and get involved wherever you'd like, and if you have any questions then don't hesitate to ask.


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