MediTest
31 Oct 2019
Author
Sarah
Title

How to make a neurologist dyspeptic at Christmas.

Body

I have been in the habit of sending my neurologist a Christmas card since my diagnosis of SPMS in 2003. The last couple of years I haven't bothered, mainly due to complete lack of response: my cards are always hand made, printed from a recent painting of mine, and I know they are much looked forward to by other people, the list growing by the year. It is sixteen years or more this Christmas since I was given the diagnosis so I think it is time to start sending him one again.

Comments

My disease developed when I was in my early twenties and started to become progressive after nearly twenty years.  In the early days up north, MRI scans were still unavailable but after twenty years they were.  One thing that had not changed with MS though, was the belief that it was  an auto-immune disease: a belief that had been held since the fifties or sixties.  Before that it was widely believed that it could have an infective cause, but what infection?

My neurologist certainly disregarded any infective cause.  His training was in the eighties, so buried in auto-immunity.  I left University College London as he started at University College Hospital, just over the road.

He was forced to diagnose me with SPMS on the day that he departed for his summer vacation, having already waited weeks for the scan.  Whilst he was away, David found out about the Vanderbilt treatment and started me on doxycycline and roxithromycin, his own combination.  So all was sorted whilst he was away.

This, to my mind, was much better than his idea for David to arrange a nursing home for me.

So, this year's Christmas card will not be sent to Bedford Hospital but to Addenbrooke's, where he will be absolutely sure to get it.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Yes Sarah,

Do rub it in, but they are all so thick skinned, almost like politicians! Nothing shakes them. And i just cannot see how they can ignore their own patient getting better on a different line of treatment and not offer that to others considering what they do offer is no cure at all. Well well this is what the reality is.

Sonal is carrying on. Only now properly getting over her fatigue from holiday, Diwali, the pulse in between. It would seem the weakness in her right hand is somewhat improved. She has gone back to MOSTLY eating with her right hand, whereas she had earlier started eating with her left. She is also dropping glasses and other objects from her hand less often. Has more enregy, she says, and feels better. But is really not mobile at all. Hope the next few months bring her some relief.

By the way Sarah, Katman Rica also used Rifampicin. What does that doo.? I was also wondering since Sonla is most likely primary progressive, would this help her as it helped Rica? Could David give this a thought? Is that antibiotic much different from the ones on the protocol or they act in a similar way?

Neena

 

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.