I ask because I don’t feel I’ve had much from any of mine.
Number 1 - first saw him 2005, he was abrupt and seemed disinterested, didn’t have the results of all my tests. Told me there was no cure and no treatment, but to avoid heat, avoid exercise and avoid stress. Arranged a course of IV steroids which did nothing for my symptoms, but left me severely constipated and unable to sleep for a week.
Number 2 - nice chap, MS specialist,listened to me and talked to me, he arranged for me to see an ms nurse, an OT and a physio, that was the beginning and end of any contact with them. He prescribed Amitriptylene. I saw him once a year which involved me making a 100 mile round trip to tell him I’d got worse, and for him to tell me he still had nothing to offer me.
So my GP referred me back to my local hospital where
Number 3 - saw me twice and discharged me, telling me he couldn’t do anything for me so there was no point seeing me again.
No neurologist for about 3 years then my GP referred me to
Number 4 - another nice chap, another MS specialist. Two annual reviews, Third appointment cancelled without explanation.Im told now he’s moved on. All his appointments have been put t on a list until there is a replacement. There are no plans to transfer those on that list to any of the other neurologists.
So, what will Number 5 be like, will there even be a number 5?
Know what you mean; do not get stupid like me I haven’t seen one in 33 years. Am I worse because of not seeing one, probably but he-ho that’s me. If they do not to see me suits me.
The one before last one I saw was Dr. Forte with ARMS and he was the nicest bloke you could meet. Then the last one; I will not say his name but bedside manner; he had none.
Like everything in life to every good thing; there’s a bad un. Hope number 5 is good; hey wasn’t Number 5 the Prisoner on TV.
Neurologist 1 dx-ed me without fuss in 1999 and got me on Avonex fast before he retired.
Neurologist 2 switched me to Tysabri 10 years later when the Avonex had stopped working. I see the MS nurse every month on Tysabri day, so haven’t seen the neurologist for a long time - no need.
So I have been very lucky and my two have, between them, helped enormously to keep me as well as possible for 18 years or so. I know that the picture can be very different when it isn’t RRMS, though. Doctors do like to be able to do something to make it better - don’t they? - and the absence of good treatments for progressive disease is dreadful.
I have had a bloody letter today funnily enough, saying I am to have neurologist no 3, I was quite miffed until I read everyone else’s posts, you just get used to 1 & then they swap you to another, ridiculous x
He is candid, but gentle in his demeanour. He presses me to air my concerns and questions, not that i need it. : )
But ultimately, he expedite’s my annual MRI so i only wait about a month for my appointment and of course, by willingly interpreting what may or may not have been multiple relapses, he allowed me to start Tecfidera without delay, as opposed to months / years of being ‘in limbo’, awaiting the worst to happen before any proaction might commence.
However with all that being said, i try to see him as little possible.
I liked mine too, that’s the problem, really hope new neuro is just as nice. 1st 1 even called to the house when I had a very bad relapse, got me into hospital quickly for chemo, not many would do that & he travelled 40 miles to see me. That happens very rarely, here anyway, others may have been lucky, obviously not poor Flowerpot. Tracey
I have just waited nearly 2 hours for a 5 minute appointment where I was told that there is nothing more to be done. I don’t see a specialist ms nurse as the brilliant one I had called Lisa sadly died and the lady that’s been drafted in to take her place only works part-time. I feel that for the 17 years that I’ve had ms I’ve pretty much been left to tackle it on my own. I haven’t been offered anything to try to improve my symptoms. I feel all the neurologist wants to see me for is to keep track of my decline.
First one - 35yrs ago. Had the MRI and LP - and did not see another for 26yrs. GP tried to get me on the MS Nurses list - but because l live on the boundary of 2 counties - the nearest one will not see me as she says l am just out of her area - and the other MS nurse is 25miles away. l have PPMS - so no dmd’s - and left to get on with it. The last neuro l saw did prescribe me Sativex - so something good did come out of that for me. And he is interested in the Vitamin D Protocol - Dr Coimbra. But he is moving on - so if l do ever get another appointment it will be with a new one.
Mine is lovely. She got me onto Tecfidera, persuaded me to stay on it and she was right! I told her about the Coimbra protocol, no wait that was my GP. My neuro has to deal mostly with dementia as the population where I live is predominantly over 75.
She got me onto the urologist list and she’s willing to share blood test results with other docs to save on my and their time. She would like me to have alemtumzumab but it’s too expensive. Maybe I will, maybe the hospital will win el Gordo?