Hi, my name is charlietea. Undiagnosed 8.5 years

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.