Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

A sea of Drs

Today, as is usual for my six weekly routine, I went up to London to see my neurologist for my injections. I sat in the waiting room running through my list of questions with my mother “Whats the likely hood of the injections making my CRPS worse again? How likely am I to pass on HLA-DRB1 type Dystonia?” etc. The patient before me stumbled back out towards us all a flutter mumbling to her partner how she could not believe the Dr was leaving. The importance of my questions vanished. My neuro, my glimmer of light in a sea of Drs who drive me to the ends of my wit and leave me wanting to throttle them, leaving? I was vaguely aware of my mum pointing out not to get emotional until he had confirmed what I had overheard.

Sadly my neurologist is moving to another hospital where they do not run a botox clinic. He has asked that I email him regular updates, and has said that if things ever take a turn for a worse I just have to ask for a referral to him and he will see me. All this is extremely sweet and reassuring. I’d like to say I smiled and congratulated him, but if I’m honest I cried…a lot. It may seem like a small thing having to transfer too a new neurologist but when I first became ill I had several absolutely hideous neurologist who dismissed my symptoms. They blamed them on stress and my history of abuse, they refused to listen when I pointed out that I had become ill at a point in my life when I was the happiest I had ever been and had moved on from my past. My neurologist was the first to take me seriously and help me. I’m terrified of being handed over to another heinous consultant.

I have one more appointment with my Dr before he leaves, which will give me an opportunity to thank  him (without crying this time) for all that he has done for me. After that it will be the start of a new chapter, hopefully one just as positive.

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Comments on: "A sea of Drs" (2)

  1. Rebecca, I totally understand your feelings and it’s my sincere hope you will find another neurologist to provide the quality of care you deserve. You have my warmest wishes. -Pamela-

  2. Lovely i completely get the sinking horrible feeling you get when you find out a Dr is leaving (or for me most recently I have to move on from my usual GP because I’ve reached the age bracket for the service), not only do you have to find someone that is willing to take on a complex patient, with a large team that needs to be kept in the loop and also willing to provide the time for regular lengthy appointments….but you then have to try to find the right “fit”. Someone who is not only understanding of the conditions but also how they have come about (its not all inner heads!!!!) and also someone with the right personality, when you are young and dealing with chronic complex illness and disability it is already a big enough burden without a Dr that you don’t get along with or are even scared to call when you have a crisis. I just want to let you know that your fellow zebra spoonie community gets you, we are here for you (please feel free to contact me if you want) and we feel your pain, in so many different ways. I’m sending love, gentle hugs and encouraging thoughts from Australia.

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