The last few months have been full on.

I got excited about finally having an answer. I had a couple of stomach biopsy’s looking to exclude whipples disease. It’s not like I wanted the biopsy to be positive, but I was just hopeful for a true diagnosis.

The results are negative. My hepatologist told me to be prepared to maybe never have answer. It’s possible I’ll have these arsehole brain lesions (or more) forever and never know exactly why. Which also means, never having treatment, or never knowing if I’m on the right treatment. This is a scary thought. It leaves me scared of what happens next, what new and annoying symptoms await me? Then again, maybe he is wrong.

I’m not seeing my neurologist again until September. This will be the longest I’ve been without reviews. I get the feeling he is giving up too.  I think his strategy is to wait until a big enough relapse gives him more clues. This is not ideal, and doesn’t work for me! I don’t have the patience or energy to endure the relapse and subsequent rehab that goes with it. And what if the next relapse leaves me permanently blind or paralysed?

There is an upside to not knowing. That is; what if they are all wrong and I never have another relapse? What if this was a once off. I’m stuck with the damage already caused, but what if it never happen again? At least amongst the worry, I can hope for that.

“Hope sees the invisible, feels the intangible and achieves the impossible”





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