On Wednesday, I had an appointment with my MS nurse to discuss how the latest round of Campath had gone.
I had a good chat, did a blood test, made a new appointment for next February and left, happy and relaxed. I’d reached a significant milestone.
This was probably the first MS appointment where the staff haven’t had to virtually prise my fingers from the reception desk and tell me to go home, everything will be fine. I always had just one more question, one more point to raise. I could quite happily have set up camp in the waiting room.
At my very first appointment with the neurologist, I left confused and with a head full of unfamiliar medical terminology, stunned that something so potentially huge could be on the horizon. I wanted to stay in that room forever, boring him to tears as I struggled to make sense of what he was telling me. At appointments with the MS nurses, there was a sense of comfort and safety as I sat in their room, emotions never far from the surface.
Having been thrust into an unfamiliar environment, I very quickly didn’t want to leave. The MS team had an answer to everything. If I could have taken an MS nurse home, I would have. The whole MS diagnostic process probably doesn’t help. Who knew it can take so long? Who, outside of the MS world has an idea what the McDonald criteria is, what oligoclonal bands are?
Not only that, there is the sense that your own world will never be the same. How do you tell your family? How can you cope once you start being bullied at work due to your diagnosis? How bad was my health going to get? The MS team helped me through it all. I was given access to a vast array of support, equipping me to become my own expert of my MS.
It’s been a long two years. When I look back to those frightening early days, I marvel at how far I have come. I’m still me, I just happen to have MS, and I now know exactly how to live with it.
Hi, I feel encouraged by the fact that you have felt supported by your hospital.
My neurologist seems disinterested in my symptoms and hasn’t offered any information or reassurance. I got my diagnosis via a copy of a letter sent to my GP. I opened the envelope at home alone, although it was on the cards my mouth fell open when I read it.
By the time I saw the neurologist a few weeks later I had read through the ms Trust and ms Society websites. I wrote down all my symptoms so I wouldn’t miss anything out but she wasn’t interested. At one point she looked at the scans and said ‘There is no evidence of that’. I felt like punching her!
This is after my first 2 relapses were misdiagnosed with strokes. I am fed up with the NHS right now.
I have a copy of Dr Wahls book (Minding My Mitochondria) and will be upping my fitness. If nothing else I’ll be slimmer and fitter.
I have considered not starting the Copaxone and going down the alternative route to see what happens.
I’ll have a chat with the ms nurse when she delivers my first Copazone but to honest at the moment I am not in favour of taking it.
How awful you’ve gone through all that. Totally unsupportive and downright rude??
Mind you, I also wrote down all my symptoms, ready for my first appointment as everyone had advised, and let’s just say I didn’t really get the chance to talk about them. Ho hum. Saying that, I’m lucky I live near such a big MS centre, with loads of MS nurses and great neurologists. Not sure how I would have fared if I was in a more rural location though – I know across Wales there is a great disparity in services.
Such a bad way you got your diagnosis. Absolutely awful. I really hope you get more support from your MS nurse.
My wife was told she had MS on her 30th birthday her consultant then was good, 5 years later different consultant told her nothing he could so go away and get on with your life.
So she did live her life as she wanted, every day was a bonus live for the next day.
She eventually had a good consultant and MS team, do what you want when you want, be bloody minded at times, stubborn if need be, and be determined at all times,but remember you are not alone.
That’s a brilliant comment David. I must admit, I was very stubborn throughout the whole diagnostic process. Looking back, I think it’s too easy to fall out the system and end up waiting years. I definitely pushed my way through it. Thank god I did! At least now I can put that stage behind me and concentrate on the future.
My neurologist is good at his job, I just find him very condescending :p My MS nurse is great, the last appointment went really good 🙂
I’m one of those people that would rather find the info myself, or even read all the books and pamphlets. I want to spend as little amount of time at the hospital as possible lol
Completely agree with you! I think the MS nurses pick up where the neuros leave off?
I’m like you – it was almost like a project for me. I wanted to find out absolutely everything. Forewarned is forearmed!
Morning, there is so much info on the web, sometimes to much, its not easy to filter for what suits you, it can be better talking to others with MS socially over a drink or 2, or tea and coffee, as they say its good to talk.
Some say my wife trained me well, I agree, my wife was a veggie and used vegan and veggie vitamins like D2 and B12, also she had reflexology which worked for her, this is something that should be available to everyone with a neuro condition.So onwards and upwards and keep taking your pills, I’m to a farmers market, have a nice day.
Yup, I agree lifestyle has a lot to do with it. Eating better, less stress, having good support networks. And often others with MS are the best sources of advice.
I used to look at absolutely everything on the internet, not I just stick to the MS Society and MS Trust and forget everything else. A lot of it is just far too depressing or sites that offer ridiculous miracle cures.
Enjoy the market! We’ve just had one open down the road from me and I love it.
Hi back from the market, I had a good cup of coffee and slice of cheese cake while out. I wish that I had found this web blog a few months ago my wife would have liked it as it has some nice and funny blogs on it.
Anyway I am a volunteer Neuro champion for the MS and MND, I was angry and to upset, and now I feel a little better, and there is unfinished work to do and things to put right. We have our launch day on the 14th Sept at Sandwell Civic Centre. I am on twitter @davidsin7, have a good weekend
That’s a really nice thing of you to say, thank you!
I don’t know anything about volunteer champions, so would be interesting to find out more about it?
Just catching up on all your posts since I came back from holiday. My I missed a lot (despite being told our appartment had wifi, having to hold my iPad at a 36 degree angle while sticking my leg out the window, balancing a tray on my head and facing the direction of the settin sun does not constitute a good signal). In summary, you have a bloody marvellous attitude, you blog like a scot (we like to talk), I don’t think you dwell on your illness ( you seem like you are living a full and interesting life to the best of your ability) and quite frankly when we all get that time when we just have to lie down/sit down what do we do???? We fiddle on our gadgets looking for new miracle cure/surfing terrible websites/commenting on other sites and playing stupid games. ( Candy Crush I REALLY hate you!!!) . Right off to check on my daughter, she has become a teenager today and I still have to decorate her cake. She is currently swanning round the house in her beloved onesie, her new Vans and a red satchel type handbag from her gran that is just”too cool”. Need coffee!!!!!
Thank you for that – a couple of other people have said I blog like a Scot, lol. We do talk, don’t we?? I could natter away all day if I had the chance.
Happy Birthday to your Teenager. Interesting times, eh? I’m currently trying to get mine out of bed. First rugby match of the season in an hour and he’s still dossing around. Can’t wait to start washing muddy rugby kit again, natch.
Anyway, hope you had a good holiday. I was away for a weekend without wifi and I was having palpitations. Meh.
Hi, below is the web address that I am part of as a champion.
Enjoy the rugby, I will be watching Moto GP on the box, with a glass or 2 of wine
Just had a look at website – really interesting. Not sure if we have the same here in South Wales?
Have picked up a rather non-muddy Teenager and chucked him in the shower, lol.
Enjoy the Moto GP!