Thursday, 17 June 2010

NHS Niceness!

I went to see a Neurologist this week, not an experience I had any great feelings about, other than the usual "Here we go again" type of sinking feeling. Having to explain yourself (all over again!) and your association with a disease that seems to invite derision and criticism from that particular branch of the medical profession (but not JUST that branch!), is at best annoying, but at worst it can be belittling and upsetting.

I was referred there this time because of a tremor which has begun over the last few months. Only happens visibly when I'm particularly tired, and towards the end of the day, or sometimes in stressful situations too. I feel the muscle spasms involved a lot more than others can see though, and it has become one of the signs which tell me I've done enough!

I have had tests recently, and the neurology appointment was to discuss the results. We discussed M.E. and my history with it. I spoke about my neuro-symptoms- the sensitivities, the strange skin sensations, my balance and coordination problems etc. He listened intently, and when he replied he was understanding and empathetic............OMG!

He agreed that the spasms/tremor was most likely due to the M.E., but could not rule out another option and so would follow me up in a few months. I left feeling understood and respected. Something of a rarity in the M.E./CFS world I'm sure you'll agree.

What a situation, to be sick, often very sick, but to be disbelieved and criticised so much that just one polite and understanding Doc brings about a whole blog-post! It would be bad enough if it were just one person's experience, but sadly we all know that's not the case.

But, for this tired blogger, it was a boost to her self esteem to be valued and listened to. Thankyou Dr. D!


  1. Your post gives us all hope that there are some compassionate doctors out there, Zarla! I'm so glad you saw one of them. It's such a relief to be believed! I hope the tremor subsides. Thinking of you...

  2. Thanks Toni,
    I think I've been lying, according to my friend my tremor started about 18months ago, and my M.E. foggy-head just forgot I'd had it that long!!!!

    He was great, and a bit cute too! Hee hee!


  3. You said it well my friend, isn't it something to have a compassionate doctor's visit inspire a post and make a day...but when you have ME, it does!

    I am so happy for you to have Dr D...and if I didn't live a continent away, I think I'd see if you didn't mind if could make an appointment with him. This disease affects our neurological systems--in many cases extremely, yet finding a neurologist to care for us is one of the greatest challenges in our navigating the medical journey.

    Ugh...on the tremors Zar and the other new neurological symptoms It's tough when a new symptoms gets added on. I also have tremors at times--some due to muscle weakness and doing too much but some, like yours due to I don't know what (skeptics--I have been tested to see if they were related to anxiety--findings--negative) My little lay person theory is that the problems with neurotransmitters that accompany ME can cause dopamine levels to fluctuate.

    Its amazing the peace of mind a kind doctor that will keep your best interest gives...whether or not he has answers. Glad he will keep watching you closely Zar--as ME symptoms can be similar to symptoms of many other Neurological Disorders. Hoping you've been tested for MS along your important one.

    I've missed you and glad to get to your blog and read your good doctor news. Here's to Dr. D and to a good appointment!

  4. Hi Kerry,
    Yep, I thought I detected a little scepticism in his voice when he said they could be stress related, so I told it like it is! I think it's always best to confront things intelligently and articulately (if the fog/word finding difficulties allow at the time hey!)
    It was certainly a positive visit, and did indeed lift my day!
    I remember MS being discussed long ago, so I'm presuming it was dealt with then but TBH I can't remember! Anyhoo Dr.D will follow up in the next few months so I'll put myself in his hands hey!
    I said he was a bit cute, but.....he did have weird 'Harry Potter' glasses! Mmm, -cuteness rating slipping!

    So glad to see you too Kerry, the elephants have been asking me where you were! We have ALL missed your visits!

    I hope the docs involved with Kerry are also kind, and have your best interests at heart. But most of all, you trust them.

    Take care chuck,

  5. There are some good ones out there. It's so wrong that we have to screw ourselves up for disappointment when we meet a new doc. I have found a good one, which means I can never move away, unless she does of course!

    Glad I've found your blog. :-)

  6. Hey Jo,
    I'm 'chuffed' you found it too! Always great to have friends along for the ride. We have to stick together!

    I'm really pleased to hear you have a good doctor, life is hard enough, but when we have a doc who we trust and feel supported by it is a HUGE weight lifted.

    Welcome to the herd Jo!

    Take care,


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