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Changing neurologist?

Hi I wonder if anybody can help me I am feeling very unhappy with the neurologist I currently see. I walk out feeling like he has not helped me at all. I was diagnosed 15 months ago with rrms he told me and basically left me to it I had to beg for an ms nurse. I then had another relapse and he decided to put me on dmds I’m currently on plegridy I have felt so unwell since I am now hopefully changing to something else. The reason I see him yesterday was because my ms nurse thought I may have had another relapse. Hes said I haven’t which I’m thankful for but I have had problems with my left shoulder for about a year I have had an x-ray nothing wrong with the bones so my gp said it could be my ms. When I asked him yesterday he said no got me to do different things trying to explain to him it’s different angles that cause the pain and I don’t believe it’s ms I think it’s something else he then said well you got your jacket on ok I said yes because I’ve learnt how to do tho rd without it hurting! He then said I will order an ultrasound but I can tell you now they won’t find anything it’s all in your mind. I was so angry is that why my husband wakes me up in the night to see if I’m ok because I’ve screamed ow in my sleep and I’m crying I take an amitriptyline at night so nothing wakes me even pain. I know it’s not the ms causing it but who is he to call me a fake over the pain. Sorry for the rant I just don’t know what to do. Janine

Hi

I changed to a different neuro due to having one that told me I was depressed and everything I was experiencing was due to my mood. He even told me once to go home and have a think about it when I insisted that I wasn’t depressed.

I went to see my GP who agreed with me and referred me to a different neuro. Since then depression hasn’t been mentioned!

So my advice is go to see your GP and talk it through with them. If you’re not comfortable with who you currently see, they can refer you to someone else.

Good luck with it.

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I stopped going to see my so-called MS specialist when he was annoying me more and more by saying my MS was very mild and wouldn’t even acknowledge my relapses. He made me feel as though I was making it all up.I have had severe relapses that have left me in bed for months.

Previous to him i saw a really good neuro who listened to me and took me seriously but he sadly retired.

This one does not have a clue about MS, how some can call themselves MS specialists I don’t know.I refuse to go again its a waste of time.

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Thank you for advice I will phone GP on Monday and speak to them x

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This is exactly how I’m feeling at minute. It took me nearly 10 years of going backwards and forwards to GP complaining of numbness in legs and waist.it wasn’t until I had optic neuritis I eventually got heard everytime I walked out of the doctors I felt like I was a fraud and nobody believed me I felt so alone. He has now made me feel like that again I will not give up I know my body and I know it’s not right x

Hello, I am in London and I want to change my neurologist, from one hospital to another. Has anyone done this recently and how long did it take? I am currently on a DMTs so I don’t know what will happen to blood test and prescription during this period? Is anyone in barts hospital how are the services there? Many thanks

Hello,

i am sorry for your experience but I assume most of have gone through the same to some extent and have been left wondering what to do. I assume you have to try to get another appointment with another ms specialist. Maybe if you go to an ms specialist explain the situation to her/him they will write a letter to your GP which might clarify the issue.

best wishes,

xxx

xxx

I’m so sorry to see that so many people have had such negative experiences of neurologists nationwide. I think its something to do with the fact that very few neurologists actually specialise in MS - they seem to be interested in a thousand different neurological diseases which are far more ’ glamorous’ ( as IF) than ours. In fact, sometimes I get the distinct impression that the management of PWMS is foisted on them by the hospitals they work for , so they take it on reluctantly ,rather than displaying an active interest in our problems. Its soooooooooooo frustrating!!!

That said, I am one of the fortunate few who has a consultant who’s sole speciality is MS, and he has worked hard to build up a dedicated and supportive service around it, so I am extremely grateful and extremely lucky; I am very sympathetic to all of you having difficulties with your own neurologists. I’d love to be able to lend mine to all of you.

Nia.

My neurologist is ace, although i haven’t seen him for 3 years lol until just last tuesday. I am 68 with PPMS like you i took over 10 years to get diagnosed and mine too was optic neuritis and two positive vep tests and stuff on my spinal cord that finally got me a diagnosis.

the problem with MS even the doctors who know about it dont get it or understand it as MS is a mystery. It affects people differently. some may have this or that and others have that and this. My neurologist actually said to me the other day he likes to see me as he learns more about it himself lol and realises that MS does not fit all the same way.

years ago before i got MS jeez i had an awful pain in my shoulder i thought i would die with it. You need to see your GP as this may not be your MS. Did you know it can be a sign of GALL STONES, yeh i kid you not. Mine was. My daughters was too.

It can be a sign of frozen shoulder and caused by the way you are walking too. do you use a cane for example? It could be onset arthritis. Can you lift your arm above your head? I really would see your GP and it can be your MS I had the worse pain in my left arm again which was awful, it radiated from my shoulder down to my elbow and it made me feel sick with the pain. It turned out to be nerve pain from the nerve pathway near your ribs where you can get the signs of shingles. there is a nerve there which can radiate to your shoulder so it could be that irritated. there is also brachial neuritis which is caused through auto immune and has been signs of it with MS. I would not ignore it and get it checked out. when i had mine i even had a heart ecg to make sure it was not that but i was fine lol. my doctor was sure and convinced it was nerve pain. I would try ice packs and heat see if it helps. you might find this of interest. https://www.tandfonline.com/doi/abs/10.3109/10582452.2013.860938

Your not a fraud your body is telling you something isnt right dont ignore it, go see your GP, and get this sorted out ok. xxxx

P.S. I forgot to say i wouldn’t bother changing neurologist i saw THREE to try and find out what was wrong with me. the MS Specialist who i paid to see did not even see my notes and told me i had ME. the other one i saw told me I had functional disorder again he hadn’t seen my notes and when he finally did he wrote to me and said sorry you don’t have FND, but you need to pursue your neurologist as something is defiantly going on I MEAN YOU THINK right lol. IDIOTS…

sorry my brain is rubbish to day. aftermath of my appoint from tuesday. xxxx

My own neurolosist didnt even beleive in M.E. so i wasted money for nothing, and the second er so called expert realised when he saw my notes you cant diagnose FND if there are positive findings on the tests.