"Navigating diagnostics whilst becoming severely disabled"

I had been told I was the only person in the world suffering like this. That I was the first case study for paraprotinemia in anyone under 50, and I believed them because I had been through 4 years of non stop investigations for myeloma cancer by that point.

I first got sick when I was 17. I contracted EBV glandular fever. It wrote off my 6th form exams..

I wasn't able to fully partake in sport anymore after that. And it never really dawned on me why. I just lost all passion for it. I was captain of every sport. I held County and national records. That still stand today.

I focused on the academic side of sport. I kept it close as a passion but I couldn't actually perform like I ever did. It hit me when I needed to do a research project for optimal hydration and couldnt meet my times or complete the 5k runs anymore.

Instead of looking into it. I adapted around it. I pulled away from competing. Went into coaching. I just saw it as missed opportunities and wanted to move on to something better. 

At 21 I moved abroad, in the sun for 2 years. I suffered an injury, had 5 pints of blood transfused. Loads of complications in surgery. Was asked no to go under the knife again in emergency settings without any medical records. They said they nearly lost me 3 times but couldn't explain why. And I had 5 lots of IV Antibiotics pumped through me in the time I was unconscious. 19hours 💚✨

As far as I knew I was fit as fiddle. Strong. Healthy. So. I didn't think about it.

A year on. I was back in the UK. Struggling with temp fluctuations, circulatory issues, fatigue, GI issues, but just put it all down to my system adapting to the British Climate after 3 years of Summers... GPS couldn't explain any of it. 

At 23 I was knocked sick. I had suffered and injury to my head and cervical spine 6 months before I developed painless twitching all over my body. My fella at the time refused to even cuddle me because they were so persistent.

Chronic back pain and uncontrollable fatigue set in within about 6months of that. That went on for a year before the twitching became agonising fasculitations. Widespread cramping. Full body siezing. It started in my hands.

This took away my ability work I had no option but to walk away from my work until I understood what I was dealing with.

I started in my hands. The cramping, time I tried to engage them. The nerve pain would shoot up to my neck if I lifted my arms at the same time I front of me, I had electric zaps all of over my body that make my limbs just flail and would floor me before I couldn't blink and gauge what happened.

I blacked out many times. These days the only thing that movement triggers is instant sight loss, cerebral bloodflow issues, and everything the neurological onslaught that brings with it. 

I could still function I just couldnt use my hands. In 6 months I was forced to give up my work. Transitioned to fundraising. All whilst attending 26 back to back hospital appts for myeloma cancer investigations. And was now totally bedbound.

It took me 9 months to train my partner up in my soft tissue skill set and teach him how to apply it so I could try and get back to my feet. Try figure out how to manage this. I needed to. Get better.

When I figured out just what it took to get me back to my feet. I only had 4 hours of energy before crashing in spasms for 12. I used the time on my feet to go back to work.

Believe or not. I was doing great. I managed to condition my body to manage temp fluctuations. By alternating between using heated facilities and pool in the spa. I learned to fire up. My vagus nerve manually because it was so obviously impacting my ability to breathe, function.

I went back to working in schools in Sept but this caused the mother of all. Relapses. I had worked through kidney infections. Pneumonia. All year. You name it. But those 6 weeks of back to school term, I caught virus after virus after virus and was left bedbound again. I had to walk away from school work and commit solely to my clinic.

I was suffering terribly with anxiety and sleep issues because of the pain and spasms. GP had withheld my referral to pain clinic for 1.5 years by this point.

Kept me on antidepressants. It was on the "anxiety and worry CBT course" that I realised all my anxieties were incredibly real and I all could do was adapt accordingly. The only other thing to try was GET.

Meanwhile the GPs were playing Russian roulette with trial and erroring different meds because I had been give an umbrella diagnosis of Fibromyalgia and mecfs to gain access to pain clinic who neurology thought would better be able to help me manage my symptoms, whilst they diagnosed the spasms as rheumatology explained to me on discharge.

They discharged me under the umbrella diagnosis of Fibromyalgia and Chronic Fatigue Syndrome and told me not to take that seriously, that it was just to grant me access to the Pain Clinic Services. 

So GET or no access to pain Clinic. Reluctantly I did. But I tried it with a trusted friend who was qualified to support me. I barely made it through our first session which was just gauging my baseline strength and fitness. That combined with the repeated viruses from Flu jab and back to school season, I couldn't even be on my feet for 4 hours anymore. I had to rest for 5 days between commuting to clinic.

 After attempting the CBT, I deteriorated so rapidly. Overnight I went from working 4 hrs a day to 4 hrs a week. I attempted GET to try recondition my body, just trying to do what I could because I still wasn't granted access to the services that apparently could help me, I didn't have a definitive diagnosis so I could not be recognised for benefits, I went from working 4 hours a week to 4 hours a month.

I had been bedbound 6 days in between clients and I just didn't want to give it up. Its the only thing in my life that had any purpouse. It was my only means for finances.

I couldn't access benefits not without my partner applying too. Which he refused. We only lasted a year after I closed clinic. He could not adapt. Or accept I may not get better. After years of trying weekly to attend investigations, medicals appts and never getting any answers. 

The story goes on. Its tragic. The pain clinic. The meds. The loss of speech from Pregablin. Not even being able to verbally communicate how I was suffering as I was deteriorating.

The constant dismissal from neurology. 2 yrs of them cancelling my 2nd opinion for neuro, referring me onto psych. Yrs of psych services assessing me. Referring me back to neuro.

Finally Infectious Disease admitted me for investigations to try diagnose the fevers May last year. When they couldn't find an infectious cause they handed me back to neuro to do their investigations.

Neuro did none. Diagnosed me definitively with CFS. Said they were not concerned. Called me in 5 months later for emgs. Emgs that were 4 years late. EMGs I had been referred for that whole time by immunology and hematology to diagnose paraprotinemia polyneuropathy as they were monitoring me for paraprotinemia with the myeloma investigation.

Those EMGs fried my left brain hemisphere and took all of my basic cognitive functioning. Mental math. Budgeting. Concept of time. Spacial awareness. Proprioception. You name it. It was gone. I had stretch marks all over my right side where they did the testing. I was visibly scarred by it let alone what it had done to my actual nerves & circuitry. I didn't have stretch mark on me before that test.

It's taken nonstop 10.months of neurophysio to retrain my brain, callibrate my left and right brain hemispheres again, fire up my nerves and regain the cognitive function I lost overnight. Thanks to that test. 

I had already decided to go private and did so in Nov last year. Was referred back to this neuro team for neuroimaging, cervical angiogram to diagnose Bow Hunter Syndrome, Cerebral  blood flow issues, structural dysfunction.

The NHS Doctor I was seeing told me that we should  agree to disagree and if the private services think this a vestibular issue they can investigate it. They diagnosed me with with FND." 

And that was in February.

I'm still managing end stage brainstem compression. I am still bedbound 5 days a week. I am still putting in atleast 8 hours a day of soft tissue work and neurophysio just to try manage all of this just to keep myself breathing and partially mobile.

I am still holding hope.

Since my cognitive function improved it was a case of playing catch up with life admin, care team, benefits that weren't paid out for whole year... Clearing debt I was drowning in from just trying to feed myself this past year.. and investing in things I had greatly needed in my life. Supportive clothing. Mobility supports. Orthopedics. Massage equipment to save my hands all the work. Portable blow up couch so I could try be out and about and spasms our when I needed. Try and achieve some quality of life after everything that's got me here.

During those investigations last year. I knew they had detected spinal stenosis. I knew they had detected myotonia just from their assessment. For them to sit on my bed and dismiss all the science the CRMC had brought forward and tell me "this is not your brainstem..."

Yet refuse to do upright imaging to confirm that? They were blaming me for becoming severely disabled. But none told me to rest. No one told me what could happen. No one told me I was writing off my future. My chances of having a family. And there they were telling me they weren't concerned after dismissing investigating the spasms for 5 years.

I have been beaten, abused and abandoned in my severe state. I was homeless last year 😳 I was alone in world like this for the first time after my fella couldn't watch me deteriorate anymore with no idea as to why. This is traumatising for anyone who has to live through or witness it. Grief is grief. You can drown in a few inches. Or an ocean. And this is what we are drowning in.

I had hidden how sick I was from my family because I didn't want to worry them until I had some answers. Until I knew I would be okay.

It's been a hell of year adapting to all of this. Grieving everything I never had the chance to when forced to push through. Been incredibly hard to accept the help of a care team. All thanks to my social carer for stepping in when she did.. So I could accept my Vulnerability. I'm 6 months in with them and I am still struggling to ask for help.

Awaiting direction for trying to access the life saving neuroimaging and surgery I need. Biopsies to see what the hell was missed through all those years of dismissal. To see if surgery will even be an option for me.

To see if I stand a chance at all.