To continue where I left off in part 1…
I plonked myself down in the neurology waiting room; a pretty miserable place that never fails to remind me of the day I sat waiting for my diagnosis. Surrounded by posters and leaflets that screamed ‘Parkinson’s’, ‘Multiple Sclerosis’, ‘Epilepsy’, ‘Motor Neurone Disease’, I question how I ever got through those pre-diagnosis months without realising I was dealing with something serious!
I wasn’t kept waiting long, a medical student soon called for me and offered to carry my coat and bag, which I thought was rather nice. I was ushered through to meet my official replacement neurologist for the first time; ever since my original neuro-man retired I’ve never known who I will be greeted by in these clinics. I’ve seen a fair few neurologists now and they all carry out their assessments in different ways – this was the first time I’d not been asked to walk up and down the office (during my 1st outing my old neuro told me I was ‘duck-footed’, ouch!). I was asked to remove my shoes and socks and sit on the bed – again, I don’t recall ever removing my socks before and when I said as much he said he likes to tickle feet, which got my approval.
This guy clearly did things differently, not only was he incredibly thorough he also wore a concerned frown upon his face during the examination. I’ve never before seen a neuro look anything but po-faced. I began to wonder if he even knew what MS was given his surprise when my feet didn’t ‘do what they should do’ as he tapped and tickled me. Turns out he was genuinely concerned. After an age of playing with my feet and legs he concluded that I have “very bad spasticity” – my muscles are pretty much in constant spasm, the reason I’m in constant pain. I initially shrugged this off, after all, I already knew my legs were screwed; however, he proceeded to ask questions about how I got to the hospital and how I was getting home. “My car”, I answered. “You drove?” he responded, “How are your legs when you drive? Do you have difficulties driving?”. “Er, no”, I said, “Although it does feel strange and is pretty tiring”. After some contemplation my new neuro declared, “I’m going to refer you for a driving assessment, you may need some adaptations in your car… I’ll also prescribe some Baclofen for your legs, oh, and I’ll book you in for a MRI scan on the brain and spinal cord, let’s see what’s going on inside there”. I still had my nurse’s words ringing in my ears (secondary progressive, wheelchair…) and so was feeling a little fragile but I was determined to get all I could from this appointment. I mentioned the conversation I’d had with the nurse and, giving a very slow & thoughtful nod he muttered, “Mmmmm, yes, Secondary Progressive” and then changed the subject… I guess there is no actual test to determine the transition to Secondary, it is very much a game of wait and see.
Finally dismissed from my morning at the hospital I staggered back to my car and sat for a moment, my mind full of all the referrals I’d come away with.
9 thoughts on “You Gotta Roll With It: Part 2”
One thing I never say is how i got to an appointment, or it’s oh my wife brought me never say you drove there, sometimes I drive with in my socks because it’s easier, Rr, sp, there all just letters don’t worry 😉😊
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I wish I’d got hand controls in my car far sooner. I had a huge boost in independence and confidence, no longer worrying that if I walked too far I wouldn’t be able to drive home.
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Yeah – hand controls are something that sounds daunting but ultimately help I’m sure. Emily
That’s pretty much how my Neurologist appointment goes, come in sit down,any relapses? Hop up on the bed very sharp scratch on my feet,heal to knee run it down to your ankle then other leg,now off bed hold arms up,hands to face ceiling now hands to floor then touch your nose with your finger then other side,always the same big medical words,stern look, muttering,blood test,mri see you in six months.
I always feel as if I have no answer if he doesn’t know if this is a relapse then how do I, I’m 18 months in from diagnosis 4 mri scans,lumber puncture, seen neurologist 3 times , numerous blood tests, now on second type of dmds and I still don’t know if and when I’m having a relapse.Its exhausting,frustrating,scary ,no I don’t have a uti,ring neurology nurses direct line someone will call you back next week then I’ll send you an appointment to come in and chat,a letter arrives for an appointment 6 weeks later! My MS journey has been slow and upsetting,I have no idea what’s next.Sorry to rant but your honesty is a comfort.
Rant away – it can be very frustrating at times! There is always a long wait for any phone call, appointment, prescription or referral – but even so I feel very lucky to have the NHS and all those wonderful professionals. In terms of recognising a relapse – I still can’t do this 8 years on! MS is so ridiculous, I hope my blog helps to ease the craziness in some way! Emily
Oh Emily, reading you r blog for the first time has reminded me that I’m not the only one. I have been slowly deteriorating over the past 2 years, well since my last dose of Lemtrada to be precise, I now have to always have my stick with me as walking and balance are crap. I was told in July that my diagnosis had changed to “secondary progressive” also, so crap crap crap are the only words i can associate with this change so I am very sorry to hear that this has also happened to you. I just want to say to you, an automatic car for us msrs’ is the only way. My partner and I brought one last year and it has been amazing. Stay strong. 👍😉
Thank you! Sorry to hear you’re not great MS-wise – it’s a bumpy old ride isn’t it?! I totally need an automatic car – hopefully soon : ) Emily
So rings a bell sitting in the nuero waiting room makes me greatful of some of the things i could have had. Sometimes having a different doc can be good with a fresh look at your MS. Keep up the fight loving the blog
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