I received a copy of a note that the neurologist #5 wrote to some doctors about my current condition where he states that gastroparesis from MS is rare and therefore unlikely the cause of my current condition. (I gave up communicating with him on July 6 as it was leading nowhere with him offering me a referral to a gastroenterologist or a psychiatrist.) He claims to have discussed this issue with me in his report when he did not. I would have argued with him — and reminded him of the lesion in my left medulla — and no doubt would have remembered that! He did all of this without attempting to contact me which really disappoints me. He is a decent man but there were others who acted by breaching confidence and interfering with my personal decisions.

Apparently, in neurologist #5’s words, I am “not severely affected by the MS.” Well, I would gladly give up the use of my legs to NOT have the trigeminal neuralgia and and digestive problems that I do have. Who has that choice with an unpredictable neurodegenerative disease?

Rare or not, I have a lesion in the part of the brain stem where the vagus nerve arises. I’m not sure how exactly one identifies the exact location of a problem lesion in relation to its cranial nerve. They seem to be able to do it easily with lesions in the pons (trigeminal nerve) but not as easily with lesions in the medulla.

And Trigeminal Neuralgia from MS is rare too.

I haven’t had a decent bowel movement since June 28.

I self-referred to the palliative team and they have been mostly wonderful.

Not sure what the next steps are but I feel like I am running out of options. Fortunately, I am able to eat a bit more than I was able to a few weeks ago, so the weight loss has stabilized somewhat but I seem to be quite a ways from putting any of it back on.

Doctors are always told “When you hear hoofbeats, think of horses not zebras!”

Well, I’ve been a zebra ever since the start of my problems and continue to be one, even to the old neurologist who is the “expert”. Their default position is always psychiatry even though I have MRI evidence of the cause of my zebraness.

My sister Miriam was visiting this week from New York. She snapped this photo of me and Daniel yesterday. I’m 108 lbs and still suffering from the gastroparesis where food just sits in my stomach and doesn’t digest quickly.

I sleep on a wedge so I don’t breathe in or taste my stomach contents at night and I think that gravity helps with clearing my stomach overnight.

Three quarters of my face is numb, I move my bowels every 3-4 days in small amounts. I’ve lost most of the ability to taste food.

It’s difficult literally starving to death and I’m fortunate that I have a palliative care team supporting me. The worst part about this wasting away is that it’s so slow! Fortunately, I’ve been able to continue going to the bathroom on my own and walk short distances.

I guess it’s one day at a time for now.