Undiagnosed and rare conditions
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Hi, my name is charlietea. Undiagnosed 8.5 years

charlieteacharlietea Member Posts: 1 Listener

Hello, it has been 8.5 years of battling an undiagnosed neurological condition. What an eye opening, disappointing, life altering, absolutely fantastic time that I am sure many can relate to.  


My story all started in 2012 when I was 25, presenting as sudden onset lumber pain, quickly followed by leg pain and weakness, a couple of hours later I was admitted to hospital, where the multitude of tests, specialists and looks of alarm begun. 


Prior to this lovely journey I was healthy, I had been a gymnast for years, I had an 18month old daughter and I was engaged. 


I didn’t understand at the time that my pain was neurological, the deep electrocuting, tingling, scratching, numbness, pins and needs, tremors extreme leg weakness, temperature sensitivity, hypersensitivity, balance issues, depth perception issues, all felt in my lower limbs and lumber, had something to do with my nerves or brain. Oh, and a few years later, bladder retention and leakage, intestinal bloating and digestive issues (being tested for celiac now). Nor did I understand that this was going to come back in various severities of relapses for the rest of my life. But the biggest learning experience has been that doctors, only know a small fraction about the body, and to them, you are just a collection of symptoms that either do or don’t tick the right boxes. 


I have learnt to re-walk many times, my modes of transport have included wheel chairs, walking frames (my high end Roles Royce model that the elderly just drool over), my walking stick and absolutely nothing when I am at my best. 


The pain never goes away, but is manageable when I’m in remission. I have had many MRI’s, CT’s, bone density test, blood tests, spinal taps, over the years and they are all normal... Shock horror. Never did I imagine myself wishing for a positive result until this “condition” came into my life. 


As I am undiagnosed, with very little information ever given to me by doctors, the frustration of being kicked over to another specialist or to a psychiatrist, who then kicks me back to the neurologist, in this endless match, it is exhausting. Is it all in my head... No, I’m told it isn’t. Is it MS, no, no lessons have been found. Is it Chiari Malformations? No, the drop in my cerebral tonsils is not enough to block the flow of spinal fluid, compressing the nerve. I have bruised many a specialist ego, first they see me as a mysterious challenge, but as time goes by and more normal results transpire, I am no longer interesting, I’m a shame to their abilities.The only thing that makes any sort of improvement is pregabalin (lyrica), but it’s just a bandaid.  


Working, studying, is all made really difficult/impossible to maintain. Of course everyone is understanding the first time I relapse, but as more relapses occur, the less understanding people become... And, without a diagnosis to throw in their faces, I have no support. I look healthy when I’m well, the excuse of me being young (less young now) has always been used as a positive to make me fell better, do they not understand that that just means I have to live with this longer? Yes, “this relapse won’t last”, the specialist says, “but it always comes back”, I respond... This is followed by silence. 


I’ve just left hospital again, I refused to go to a physical rehabilitation hospital. I just want to be home, with my daughter, and build up my strength again, Ive learnt it all over the years. 


I don’t think this is something that can be solved in my lifetime... A sad thought, but this is certainly echoed by many in the same situation. 

Replies

  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    Hi and welcome to the community 

    I am sorry for all you have been through it must be really tough 

    Feel free to have a look around and join in we do have a undiagnosed section you might find useful 

    Glad you are out of hospital its always better to get home and recover in your own surroundings 
  • chiariedschiarieds Community Co-Production Group Posts: 9,222 Disability Gamechanger
    Hi @charlietea - & welcome to the community. Thank you for sharing about yourself, tho I'm sorry you have neuropathic pain, but, as yet, no diagnosis. I do sympathise, as I have been through much the same myself, & am just left with Pregabalin too for my neuropathic pain. I often used to wish you could get all the specialists you might need in one room, & that, after listening to you, they would be able to diagnose!
    I'm sure you will be pleased to be back home for the Easter holiday to share this with your daughter, & that by exercising at home you will rebuild your strength again.  :)
  • Welshjayne2021Welshjayne2021 Member Posts: 85 Courageous
    Hi and welcome. Wow! You have been through a lot.  It is a little worrying that with all the technology and scientific knowledge we have, and yet no one can give you a diagnosis.  You must feel so frustrated!  I glad to hear you have a very positive attitude, that will see you through.  I have found having a sense of humour helps as well.  Hope to speak to you again.  Happy Easter.
  • ncmitchncmitch Member Posts: 3 Listener
    Hello,

    I am so sorry you have had such a difficult time :(

    It is probably not this, but try looking into Functional Neurological Disorder and ask your doctors about it. Even if it is not right / doesn’t fit, it might be worth a try looking into? The website www.neurosymptoms.org has a lot of information on it.

    Good luck :)
  • mikehughescqmikehughescq Member Posts: 6,644 Disability Gamechanger
    My second diagnosis was missed for 45 years. It then took a further decade to get from that initial correct diagnosis to establish that it was in fact a partial diagnosis. A wholly life changing experience. The truck for me was to largely bypass consultants and work with the people doing the research.
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