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Limbo

Dear All,

Forgive me for intruding and the length of this post.

Following a viral infection in 2012, unusual blood results and an everlasting wait for a brain scan, my wife and I decided to afford to seek the advice of a private neuro-consultant. At this point, I was examined, scanned and underwent conductivity tests. The scan can back as unremarkable and the conductivity tests were inconclusive resulting in the diagnosis of ME/CFS.

Because we paid for private treatment our own NHS doctors would not provide the medication that the private hospital had prescribed, that being Modafinil. I found little or no relief from the tablets and after a while could no longer afford the cost of them, given that our business at this point had started to decline a little adding to our stress.

My doctors later prescribed Sertraline (antidepressant) during 2015 as my mood had become very low as I had suffered various chest infections, pneumonia, had an endoscopy due to problems with digesting food, an intercostal infection alongside the frustration of constant fatigue, the inability to keep up in conversation and constant confusion. My short-term memory is now appalling and I cannot be in loud environments and become confused during even short telephone calls, I shake and my voice becomes disturbed and I feel embarrassed.

My symptoms now consist of left side headache, I see bright lights at night, my left eye feels like it is pulsing and the colours I see seem dull or washed out. I am no longer able to perform any exercise and if I try my pain increases within 24 hours and lasts for many days thereafter.

On a daily basis my neck is stiff, I have pain in the top of my arms if I lift anything, lower left back pain, left bicep and thigh pain, tremors running through my limbs like worms/snakes, which are painful to touch, intermittent numbness in my left face, right heel, pain in fingers, itching, little strength and food passes through me quickly - any task takes an age and I sometimes fall and become dizzy when I stand - stairs are difficult as I have to think which foot to move/coordinate. I no longer drive because of my spacial awareness.

I have not worked for almost two years now but ME is not recognised as a critical illness so I cannot claim any income protection paid for since 2009.

Because of my situation, my wife and I paid to see the same private neuro consultant again in September. He quickly dismissed my symptoms and ordered an MRI to prove MS. The neck and brain scan came back as unremarkable other than for age-related degeneration.

He wants to try a new drug, if our Doctors agree to prescribe this instead of Sertraline, and mentioned hypersensitivity of the central nervous system. When my wife asked questions about my symptoms he clearly hadn’t listened during our initial consultation as he referred to his notes and started to write.

I/we are at our wits’ end - can anyone please help?

Apologies if this is not very coherent, I just needed to list everything.

Thank you.