Report from neuro #5

Posted by on Aug 28 2016 | Health Care, MS

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108 lbs

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.

report received by e-mail 10 August 2012

report received by e-mail 10 August 2012

 

 

1 comment for now

One Response to “Report from neuro #5”

  1. Deborah Gibson

    It continually shocks me that you’ve received so little understanding from your doctors even though MS is a disease that presents so variably. Zebras should be studied and taken note of as cases that enrich research and knowledge.

    28 Aug 2016 at 9:04 pm

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