Im goin to be making a documentary for the BBC its called “The hunt for the elusive neurologist” maybe get attenbourough in for it.
Seriously though im a bit p*ssed off i think the powers that be are draggin theyre heels quite a bit. For full effect im going to take you back to the beginning of the MS saga documenting what i believe is a poor effort from the NHS.
December 3rd- went into hospital. wasnt till the 15th that i got an MRI. Got out of hospital just before christmas with the idea that i’d be goin back for a scan in january. This second scan didnt get done until the end of april and that was me just gettin the results on the 16th of june, by letter, “confirming suspicions of MS” Needless to say ive been goin off ma nut ever since, smoking fags, drinking, gamblin,eating a terrible diet, spending all day in front of this computer lookin for a way out,wasting time. But now im trying to get a hold of said neurologist to talk about this latest development and the story goes that shes away for 3 weeks in july and unavailable at the moment. What am i supposed to do here, im trying to get my life back together and these people are making it very hard. All of sudden i feel very old, havin a right good moan about the state of the health service and i kinda feel that this is the stuff that really ages people
I once got an appointment through the door to see neuro,it was 11/2 after the appointment arrived on my doorstep,then you get the 5 min consultation,learning absoutley nothing,
I would guess from your post that you are in limbo waiting for some sort of definitive dx not just “suspisions”. I can understand how you feel but I honestly don’t think a dx will make you feel any better. There is a certain amount of relief with a dx because now you know it’s not a brain tumor or something more revolting but that relief is short lived.
Many people probably feel that a dx will open up the way to a level of care from the NHS that would be otherwise lacking. Truly I don’t think that happens. Getting your life back together and learning to cope will be your responsibility. It is a shock at first but life goes on — I’ve had MS since 1995 so I know that is true. Finding out how to get along will happen on this website much more than on a 5 minute appointment with a neurologist or even an MS nurse.
So, don’t worry about the elusive lesser spotted neurologist they don’t offer much anyway. I will give you the advice the neurologist gave me “go away and live a healthy life”
no your right i dont think i will feel any better with a dx, but i want to be fighting against this thing as early as possible with all the knowledge and treatment possible. Damage limitation is the name of the game. Does anybody know if i can have a copy of my medical records sent to me?
legally you are entitled to see your medical records but in reality they don’t like them being moved off the premises. i asked at me gps surgery to see my notes and i was “allowed” to read them in a spare room but could not take them home.
couldn’t read them anyway because of the doctorly scrawl.
i spent the first 12 months researching and made a wish list of meds i’d like to try.
alemtazumab (campath) is not available to me because i’m too old (cheeky!)
LDN is contra-indicated with some of the dmds, but not copaxone. therefore when i got to choose my dmd, i chose copaxone. i got my ldn from a private doctor.
raymond - i’m still going off my nut! still smoking but don’t drink much any more (only because it started makin me feel sick).
please believe me when i say that you will survive.
“it’s life jim but not as we know it” for trekkies out there
This is for Raymond and Carole both. (And anyone else interested)
Look up the NHS Constitution. Read it carefully to find out just what rights you have as a patient - including the right to see your records (as I recall, it is free to see them within 42 days of a procedure or after seeing someone). Copies cost, but since all the recent stuff should be computerised, you should be able to ask for them to be put onto a memory stick for nowt. If you cannot find the Constitution, I have a copy of both the constitution itself, and the Handbook to it, sitting on my hard drive in PDF format (and hence e-mailable).
I had to look at mine on the premises as well. They even gave me a cup of coffee!
They would have photocopied if I insisted, but they wanted to charge 5p a sheet, from memory, and there were a lot of sheets, so I was looking at 40 or 50 quid!
In my case, I only wanted to look once, to see if there was anything in them that was likely to undermine a critical illness claim. If there had been, I couldn’t have refused disclosure, but I would at least have been able to anticipate the insurance Co’s arguments, and think up ways to respond.
£50 for something you only want to refer to once seemed a lot to me, so I was happy to review them on the premises.
I didn’t ask about memory sticks, but don’t forget, only relatively recent records will be computerised. As mine spanned nearly three decades, a lot of them - the majority - were handwritten.
They were surprisingly boring really. I don’t think doctors will chance writing anything contentious these days, because they know patients might look at them!
The only thing that was a bit surprising was how many times I’d visited the doctor for seemingly minor, unrelated things over the years, many of which I’d forgotten.
I now think most, if not all of these were probably something to do with MS. But I was lucky that nothing was so obviously neurological as to cause problems with the insurers.
50 quid! must be quite a file youve got there. Think i’ll want to get a hard copy of the records, that way i can get second opinions. Only records i should have are childhood vaccinations and this. Generally i dont get unwell, come to think of it i cant even remember the last time i even had a cold, or any sort of virus. I wonder if thats got anything to do with MS and its effect on the immune system?
thanks for the comments appreciate all the knowledge i get from this forum, even though part of me hates the way its became a huge focal point in my life
I didn’t actually go to the doctor’s very much, believe it or not. The file was quite bland. But even just occasional visits over a quarter of a century leave a lot of paperwork.
I strongly advise you to look at it before paying for copies of anything. Not only might you be surprised quite how much there is, but about nine tenths of it may have no bearing on what you’re looking for, so you’d have paid for copies of junk.
Although it was quite interesting refreshing my memory what I’d been to the doctor about in 1990, most of it was irrelevant, and I’m glad I didn’t pay.
I did think there was an overall pattern of “incidents” that were never satisfactorily explained, though - and I now think these were probably the beginnings of MS. Quite mild relapses, perhaps?
But although they do seem more significant with hindsight, you wouldn’t accuse anyone of negligence, for not spotting they were all related. On the face of it, quite minor, unconnected things, with months or years between them, so it would have taken a stroke of genius to link them all.
