Hi, my name is alienkitties! — Scope | Disability forum
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Hi, my name is alienkitties!

alienkitties Community member Posts: 3 Listener
Hi Guys....Looks like the Movement Neurologist has just diagnosed me and is sending me further on to a Functional Neurologist for FND now. Yay. (Sarcasm inserted here,) but not without at least some little relief. It isn't a full answer, but does at least start us in the new direction and hopefully some relief. 

Here is me:
I have had Raynauds since I was 2, pain since 12 that was later diagnosed at 19 as arthritis and later again as also Fibromyalgia multiple times. I have had issues with bleeding from childhood through adulthood (Worst examples of nosebleeds of over 13 a day lasting more than 45 minutes each. NOT thin veins.) I have polycystic Ovaries. I have multiple anomalies (extra arteries, extra muscles, abnormal sinus cavities - non life affecting, except that it did cause nerve compression in the left arm.) I started having a "buzz" in the nerves in my teens... also leading to another diagnosis of Fibromyalgia and chronic fatigue... in my 20s. I am chemical and food sensitive, and have multiple allergies. I started having episodes of "paralysis" later diagnosed as hemiplegic migraines in my late 20s - although I can look back at symptoms as far back as 19, now that I know what it was. Recently, I got covid and afterwards started having SEVERE muscle spasms, twitching, PAIN, paralysis - and now have these daily. I am losing my ability to walk and talk, and the pain is EXTREME. The spasms are so bad I feel like my back/neck shoulder - wherever might be having them at the time, will break. This is NOT an exaggeration. This is what it feels like. My bones/joints CRACK. It is exhausting. 

I have not been able to work since January of '23, and these issues continue to worsen. The neurologist has run what tests she could, sent me to a neurologist at a specialist hospital, who next sent me to a movement neurologist, and after seeing him, I will now be forwarded to a functional neurologist - which has exhausted and discouraged me beyond belief... LOL (I know all of you can relate.) 

This is after DECADES of being told this is all in my head. That nothing is wrong with me... that there is no reason for my pain or hemiplegia. And I have NEVER had improvement... EVER. And now, I am losing my ability to function at all. 

I am exhausted. I hurt so bad. And I know that this is a real thing. But I find it discouraging and makes me SO ANGRY to have people ASSUME this is something a CHILD would choose to experience. That i would CHOOSE to feel pain without relief for DECADES. To CHOOSE to lose my ability to walk and talk. This is NOT a choice. And it is NOT "in my head" - it makes me so angry.

BUT - I also have a new direction to go - and can maybe find some relief.

So... hi... and just... hi.


  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    Hello @alienkitties

    Welcome to the community! Wow, I am so sorry that you had to go through so much and have not had the care and support needed. I really hope that this new direction is going to find you some relief.

    Please know the community is here and we will help in any way we can <3 Can I ask, do you have support around you? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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