I wrote an update yesterday following my tour of 3 hospitals on Monday and then our bl00dy internet went down as I hit post so it disappeared and I didn’t have the energy then to start again
So here we go again…
Monday am Hospital 1- Liver and gallbladder scan following rocketing ALT blood test (over 400 versus norm of up to 45). Dr said my insides were ‘beautiful’. No fatty liver, lesions or tumour like structure changes. Nothing to show why it is still pumping out the wrong stuff. Consultant now investigating other things like Muscular Sarcoidosis (rather than liver or lung type) and Cushings (Cortisol producing pituitary tumour).
Monday lunchtime Hospital 2 - Diagnosed with optic neuritis by eye specialist following night in A&E on Saturday. Consultant now requesting brain MRI at last! Signed off work again. Pain has gone but left eye still has black blob and reduced vision.
Monday pm Hospital 3 - Consultant (Rheumy) now doing stuff mentioned above. C Spine and Tspine MRIs clear except degeneration and prolapsed disc. Says disc not pressing on spinal cord as I have ‘nice wide channels’ and it has moved out of the way - so wonky but not compressed and not the cause of the probs. Brain MRI booked now for Friday am. Says he will only refer me to a Neuro if I have lesions on brain MRI. If so then he still wants to see me himself as he dowsn’t want to close off any avenues of investigation yet given weird liver results. Has given me some sleeping tablets to try and partly replace the amitryptiline that he’s had to stop me taking re my ALT levels. He’s not convinced it was this as I was only on 20mg but doesn’t want to risk it. Now getting a weird drug induced sleep again but it doesn’t help with the pain or other symptoms.
Anyone know anything about Muscular Sarcoidosis (rather than other versions)? Rheumy says it can mimic MS re many many symptoms we are all experiencing and you can also get it in eyes causing ON. Says quite rare but not impossible - think zebras not horses. I’ve never heard of it before.
Please let this post successfully this time. Fingers and eyes crossed.