My apologies for posting this anonymously but I wanted to keep this discrete.
Does anyone else have problems with their consultant not taking your symptoms seriously ?
He sometimes get the feeling that he doesn’t believe me when I explain how bad I can get. He kind of scoffed when I mentioned that I sometimes need a wheelchair and often dismisses my symptoms as trivial.
I walk with a stick outside with help from my partner, (we link arms and he keeps me steady.) I manage indoors using furniture and walls for support.
But the strength in my legs doesn’t last for long and realistically if I need to walk any distance , such as shopping or a day out, I need a chair.
He has now hinted that I maybe could do without even a stick !
It’s like he just doesn’t get it or doesn’t believe me. He only sees me for 10 minutes once a year , he doesn’t see me struggling daily.
My MS nurse gets it and my physio understands completely and has encouraged me to use the chair more often ( because I got to the point I wasn’t going out for sometimes weeks at a time ,because I hated being in the chair )
I think that’s why I feel so bad about his attitude…it took so much to finally admit I needed the chair sometimes and only with lots of support and encouragement from my physio and partner did I finally start using it.
Stuff his attitude. It sounds to me like you’re almost looking for approval to use the chair. I can fully understand that. I was so against using one at first. I felt I was being “weak”, giving in to the MS. It was when my OT worded it that, by not using the chair and exhausting my little remaining energy and being unable to get out to places without using it, THAT in fact was "giving in " to the ms. I’d let the ms win. She completely turned my way of looking at things around. Maybe you could too?
Next time he suggests that you manage without the stick, maybe you could politely let him know that you wouldn’t want to hold him responsible for any fall or injury you might incur, as a result of following his advice/suggestions? I’m very assertive with my neuro!
My physiotherapist suggested I get a wheelchair and I was very reluctant to say yes, but so glad I eventually did. It’s taken a wee bit of getting used too and I can’t say i’m totally at ease using it. My husband often remarks to me that what is the point of not accepting the help you need now and waiting until you are too weak to use something. I’m being badgered to get a stair lift now. I always ask my medical practice for copies of letters sent by my consultant to my doctor. I suggest if you don’t do this, then do so. I’m very fortunate as I see a rehabilitation consultant and his extensive letters make interesting reading. By getting copies of the letters you’ll see what your consultant really thinks.
I remember first using a stick, it did feel as though I needed telling that I should. Or having permission granted to use a stick, crutch or wheelchair. I also felt embarrassed when I first used any of these, even though it meant I was safer.
If your consultant makes you feel bad, you need to see if there’s another you can see. Does your hospital have a list of consultants on their website? Or is there another hospital you could reach (within the same Trust maybe) with an MS specialist? You could do a bit of research to find out which doctors are available, then see your GP and ask for help in moving to see a different neurologist.
I see a rehabilitation specialist neuro too. He is utterly brilliant, he referred me to Wheelchair Services and to Orthotics. He gives fabulous advice on drugs and is also responsible for a residential rehab unit that I’ve used twice. If you have one you could be referred to, it might make all the difference to how you feel you are being cared for.
I guess I feel that it’s bad enough that I need to use a chair , I could really do without the sceptical looks from him. I’m not using it as a fashion accessory…I absolutely hate being pushed around.
I should invite him to come shopping with me and he can see how my legs hold up in the real world ! My last appointment really got me down.
I think I do need to be more assertive with him…I’m just not great at being my own advocate.
I do get a copy of all my letters and they really don’t say much about my symptoms at all. I did see a stand in consultant last year and he was completely different, he actually listened and listed all of my symptoms and problems in his letter.
I have this problem i told mine i wasn’t going to see him again as it was a waste of time.My old one who i got on well with retired a few year ago and i liked him very much,this new one i did not like from the start,every time i told him about some symptom he dismissed it.
According to him all that i am going through isn’t MS.I have lived with it for 27 year now and i know my MS better than anyone.I have had a problem with walking from the word go.I have only been able to walk a few yards and then have to rest.I have cognitive issues which he says isnt my MS i know it is.
My old neuro said i had moved on to SPMS which i agreed,this new one said i am benign MS and thinks its all in my head.I saw on a letter he wrote to my dr that he said he was surprised i had to use a scooter???
when i saw this letter in my medical notes i wrote him a letter a very detailed one on just how my MS affects me and told him i wasn’t going to see him again.I have no faith at all in him.
This neurologist is not really helping you and in my opinion is not listening. You are the expert in how you feel and the only one who really understands the dynamic nature of your condition.
If you feel understood and supported by your MS nurse perhaps you could get them to help you find a more understanding neuro.
My first neurologist made me feel like a time wasting fraud, I was not ill enough to justify his help. I eventually found another neurologist after a recommendation from a trusted colleague of mine.
Chalk and cheese… whist he is quite forthright I feel listened to and trust that he is working on my behalf.
