13 yearsa after my dx I am finally going to see a toothfairy(ms nurse)I kne they existed but never seen one,imo they are in the same catogarey as a neuro ,another toothfairy,lol,i wait with bated bated breath for nextt friday appointment,and c if she actually does exist,lol
I have seen a toothfairy. That is, I was in the same building as one. Unfortuntately, she was not MY toothfairy. I have never been allocated a toothfairy.
I suppose I must not have been a good enough girl.
Hi, I`ve seen my toothfairy a few times.
She has been able to help me with a few different things.
You have to believe or she won`t come true!
She`s never left me a sixpence under my pillow…but then I have never left her any teeth either!
l have never seen the tooth-fairies either. l did see a neuro 30yrs ago when diagnosed - even he was not a ms specialist.
26yrs later l did get to see another neuro - first thing she said was ‘l do not know very much about ms - l expect you know more then me’ - then l had an appointment last month with one - l waited 1 1/2 hrs - was in there 5mins. He asked me how l was getting on with Sativex and LDN - l said it was very successful - he said most people found the same. And that was that.
As for a MS nurse - l live in no mans land - on the county boundary - too far from one and too far from the other.
The nearest MS Therapy Centre is too far away. lts a post code lottery. West/East Sussex looks to be a good area to live in. And some parts of Scotland.
l had a MRI when diagnosed - but never had another. l was told l had SPMS - right from the start - so l suppose they consider me beyond help. l have never had a ‘remission’ - my ms has been my constant companion all this time.
l did have to have a tooth extracted recently - but still haven’t seen a fairy.
But l suppose l should still keep some faith in the possibility that they are around.
Like Tina - l must have been a very naughty girl!!!
There are two tooth-fairies that i have access to but i have only met one of them. She is lovely and very helpful.
Tooth fairy is a fantasy.
Specialist Multiple Sclerosis Nurses are very real, I would class the one I see as a guardian angle, to all her MS patient’s.
If I were you I would reserve judgment until you have met her/him, and never put, MS specialist nurses in the same category as a Neuro, they are far more knowledgeable about your MS problems than any Neuro.
Hope your appointment goes well.
I. El. (Eng). (Rtd).
I have seen 2 MS nurses over the past 7 years. First one visited my home for around 45 minutes and then contacted my GP to ‘tell’ him to tell me that she wouldnt be seeing me again as I asked far too many questions. Letter of complaint sent and apology from Health Board and a very quick referral to another MS nurse-who has had the same training as the first one, they know each other and work less than 50 miles apart-but the 2nd one ‘knows her stuff’, listens to what I say, and gave me info re LDN. Shes a breath of fresh air.
So, I would say-yes, look forward to meeting your nurse and take it from there. Its very much a postcode lottery.
Neuro? Dont get me started!!!
Like everything in this world you get good, exceptional and c*ap! Whether that job be builder, accountant, teacher, shop assistant or any job u care to name. We expect staff in the caring profession to be just that-the most of them are-just unlucky if we are on the receiving end of someone that should have got a job that they wanted to do by choice and really did have their patients (or service users as I believe we now are called) instead of pretending that they care. I am aware of heavy work loads etc (I was a Staff Nurse for 10 years) but theres NO excuse for blantant rudeness and not caring.