If the divine right to prescribe m.s. drugs was taken away from neuros and given to M.S. nurses I think we could manage very nicely without neuros.
1 Like
Iâve just swapped my neuro for a rehab specialist (who I used to see as well). Between him, an MS nurse, stoma nurses, physio and a decent GP, Iâm sorted. But then I donât qualify for DMDs anymore.
Sue
1 Like
Only a neuro may diagnose MS.
No neuros, therefore, means no MS.
Problem solved.
A.D., Youâve done it again!
Hoorah. MS gone forever.
Grandma
have you had a bad experience with an ms nurse or are you afraid of seeing one. (excuse the lack of question marks)
i see ms nurses at both the main hospital and a local long term conditions clinic.
i prefer the one at the hospital and when i have a choice, choose there.
both are good though.
carole x
[quote=âalbrecht durerâ]
Only a neuro may diagnose MS.
No neuros, therefore, means no MS.
Problem solved.
A.D., Youâve done it again!
[/quote] My guess is a competent radiologist can spot m.s. but protocol means that the actual dx can only be given to the patient by a neuro. Similarly with prescribing m.s. drugs. And so the neuro becomes all important because of the power they have.
1 Like
Hello all - I hope I find you well on this crispy cold day (before snow for us tomorrow!).
Basically to add my two-pence worth to the discussion, I have found (in my experience) it all depends on the area/region you live in.
To explain:
I had a diagnosis of RRMS nearly 20 years ago, and from the time of that diagnosis I never saw my Neuro (or any care-team members) again. So no DMD offerings, physio, etc, â zip, zilch, narda, squat!
Having now retired, moved house 2 years ago (and consequently region of the country) I was immediately given an MRI appointment by the ânewâ local doctor at the local main hospital, allocated a Neuro care-team, and already seen my ânewâ Neuro 4 times so far.
As result of latest MRI the ânewâ Neuro has formally updated diagnosis to SPMS, and requested (with my agreement) consideration for taking part in a formal Biotin (Cerenday) trial through the Neuro team at Addenbrookeâs.
So I feel Iâve seen both sides of the MS-care coin, fallen on my feet as it were with the house move, and consequently have absolutely nothing but praise for those I deal with now.
1 Like
My ms nurse is amazing when it really matters.
What is a NEURO? I see more pigs flying lol. I got diagnosed last February FINALLY after a long wait and havent seen or heard from him since.
No I went to Breakspeare Clinic in 2011, and she diagnosed me then and there are a 2 hour visit with MS and a co infection of Lymes, BUT of course protocol would not allow her diagnosis to be taken into consideration.
She was SPOT on if NHS had listened to her i would have had 6 years more of treatment. She did more for me in that 2 hours then the first visit 2006 with the same neuro i saw last year lolâŚ
MS drugs well DMD i can understand but the rest can be done by a GP surely and as to an MS nurse they are rarer then the neuro in my area lol.
RADIOLOGIST. My uncle in Italy is a radiologist and i sent him my first films i had done privately in 2007, as i was told what was seen was probably just my age lolâŚnot demylinating disease.
My uncle told me straight away via my mother at the time that I had MS. He was very angry over it. But it still took about 10 long years for the neuro to catch up lol.
IN my area which is large there is ONE MS NURSE.
Truthfully, there are good neurologists and bad ones, good MS nurses and poor nurses too. I used to see a neuro near where I live. He was terrible and the MS nurses at the (huge) hospital were awful too. Iâll give one example (out of many) of the poor care I received. A couple of years ago I had the most agonising facial pain, every time I ate or spoke or cleaned my teeth. I saw my dentist, who did an X-ray and said there was nothing wrong with my teeth. I spoke to my MS nurse who said it was nothing to do with my MS. I did some internet research and worked out it was Trigeminal Neuralgia, an uncommon MS symptom. After 6 or 8 weeks, it went away - classic relapse time. So the MS nurse was both ignorant and unaware of her ignorance. I see a really good neurologist in London now. Itâs much harder for me to get there but worth it. The MS nurses there seem good too.
My MS nurse is adamant that MS will not cause headaches, nausea and dizziness.
Yet my GP and Internet write ups all say that MS can cause symptoms of vertigo, which include all of the above symptoms.
2 Likes
At my last MRI I was told by my MS nurse that the neurologist was discussing the scans with a neuro-radiologist.
Anthony
I had heard a lot about my MS nurse before I met her. People at the support group that I go to see her and to listen to them talking she is gods gift to people with MS.
In my experience though sheâs really not that good. Of the few times I have tried to contact her (via answerphone or e-mail) sheâs only actually got back to me promptly once. I e-mailed her a couple of months ago when I was having a tough time and so far iâve heard nothing. Mentioned this to a friend at the support group who happened to be going to see her a couple of days later and she said she would mention it to her when she had her appointment. She texted me after her appointment to say sheâd mentioned my e-mail to the MS nurse, and MS nurse said sheâd get back to me. Again - NOTHING!.
I do get a bit fed up with the whole thing. You see the MS nurse and she tells you to do A, B and C. You go to an appointment at your GP and she says NO you should be doing C, D and E. etc. etc. etc. I feel like piggy in the middle and not at all sure what to do for the best. Yes my GP knows me and is looking after ALL of me, but my MS nurse knows MS (apparently). Stuck between a rock and a hard place.
Anyway - iâm actually seeing her for real tomorrow - however the mini âcrisisâ that I contacted her about has now passed!
2 Likes
As someone who doesnât get MS drugs, neurologists are as much use to me as a chocolate teapot!