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  • Undiagnosed Pain in Thighs and Buttocks

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    Old 12-21-2019, 04:36 AM   #1
    Cyn96
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    Undiagnosed Pain in Thighs and Buttocks

    I'm 24 years old, currently plagued with searing pain in my thighs and buttocks which is unrelenting. Crippling lower back pain four days out of the week and weakness in my legs which has forced me to use a stick to get around. The pain in my thighs never ever stops, it's driving my depression into the ground and I cannot get any traction with the NHS. I heard of RLS once, but every doctor has ruled it out, and after investigating research myself I have done the same. It doesn't fit the "criteria", only the name.

    My consultant seems to think it's neurological now (bounced from specialist to specialist so my faith is slowly dissipating) because of some disassociation, confusion etc. and after a rush to hospital because of said neuro symptoms a CT revealed a large Arachnoid Cyst that encases the entire rear of my brain. Neurologist at the hospital ruled it out as he believed it has been there since birth. So I'm now turning to the internet to see if anyone else has the same thing or can offer advice based on their similar experiences.

    Recently one of the vertebrae at the base of my neck (C'spine) has swollen up and its tender to the touch and uncomfortable to move my heard much.

    The pain has progressively gotten worse over the years and the pain relief listed below are becoming less effective because of tolerance. I have MRI scans being reviewed and if nothing is found on these ones too then I will end up on stronger pain relief (Morphine is the most likely according to my consultant). Current medication for my pain is listed on my profile.

    With six months between each appointment in the NHS, by the time I get to the specialist something changes, the pains worse and my legs are weaker.

    When I'm stood up the pains no better, my heart pounds to 160bpm and my head goes. This slowly improves, walking around I get more cloudy and my mental function just stops.

    I am slowly losing myself, I've lost family and friends because of the pain, I've been signed off work indefinitely and I'm forced to live on Universal Credit, but without a diagnosis I can't get any more support from the government here. I can't afford to live like this anymore.

     
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    Old 02-09-2020, 03:19 PM   #2
    teteri66
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    Re: Undiagnosed Pain in Thighs and Buttocks

    Oh my goodness. Iím sorry I havenít seen this post before. I used to be on the board every day, but in recent months have become very lax.

    Are you still here? Have you gotten help? I live in a city in the US where there is a dynamic teaching hospital that has a specialized treatment program for arachnoid cysts, which can be very dangerous!!

    If you respond, meaning you are still on the board, I will write much more! You need help!

     
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    Old 02-09-2020, 04:35 PM   #3
    Cyn96
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    Re: Undiagnosed Pain in Thighs and Buttocks

    Quote:
    Originally Posted by teteri66 View Post
    Oh my goodness. Iím sorry I havenít seen this post before. I used to be on the board every day, but in recent months have become very lax.

    Are you still here? Have you gotten help? I live in a city in the US where there is a dynamic teaching hospital that has a specialized treatment program for arachnoid cysts, which can be very dangerous!!

    If you respond, meaning you are still on the board, I will write much more! You need help!
    Im still subscribed yes, usually don't check my emails but thankfully this popped up on the one time I do.

    I lost hope for a while after a lot of replies that weren't helpful. A common one was endometriosis, which of course typically always appears in women. Being a guy brings the chance of it being that to virtually nil.

    Since my post I've had the prelim results back from neuro after a brain & full spinal MRI. My doc put on the results what she thinks it is, either meralgia paraesthetica or Degenerative Lumbar Spinal Disease. I'm not sure whether she was disproved by the results or not but here in the UK specialist appointments being scarce mean it'll be April before I see her again and my MRI was before Christmas.

    In the results she said she agreed with the assessment made by the neuro in another hospital who stumbled upon it, no clinical significance.

    Seems to be the three words that I hear in every appointment and after seven years of advocating for my health, trying to find an answer and hoping for a resolution I'm getting tired. My legs hurt more than ever, they're weaker, my spasms have become as if a large surge of electricity went through them (last night my arm flexed out violently, hurt like a b*). I have an appointment with Pain Management in a week or so - I'll ask if they can just sever the lateral femoral cutaneous nerve if they think it's the former, but I don't believe it is. I would have to be unlucky to have a pinch or compression bilaterally. The pain is in both legs, and the buttocks as well.
    Seem to be forever searching but never getting anywhere. Thank you for your reply, I'll take any advice you could possibly give me.

     
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    cervical spine pain, leg weakness, restlessness, thigh pain



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