I’m back from the neurologist - feel like I’ve been on a rollercoaster.
Well I got called in and was horrified when he opened my notes to see the letters from my last neurologist which I’d specifically told my GP not to send as I wanted a completely new opinion.
He said - ‘oh you’ve seen so and so, he’s great!’ I almost felt like crying on the spot.
He then preceeded to read the 3 letters interspersed by asking me questions about bits and when I told him about the bowel he murmured could be anxiety. I thought this is really not going well. I then told him about the latest new episodes I’ve had and he said ‘so your MRI’s essentially normal and your still getting symptoms?’ He then said - ‘let me do some tests but I’m not expecting to find anything’ - I felt my stomach clench. I almost felt like saying - whats the point if you’ve already made your mind up. He spent the next 5 minutes doing some shoddy neuro tests (even the first registrar I saw did a better job) and then told me to take a seat.
He then said yes all normal apart from slightly reduced light touch sense - blah blah blah. So do you want to continue being seen here or at the national hospital? I braced myself and asked so I’m still getting symptoms but you can’t find anything what is this? I was prepared for him to say it’s all in your head… but he turned round and said ’ you seem like a logical happy person so I don’t think it’s anxiety or depression. The symptoms and pattern you’re describing are suggestive of MS but I can’t just diagnose you. The evidence needs to be there on the scans or LP.’
I swear my tongue almost fell out my mouth.
He then talked a little bit about how MS diagnosis is not all doom and gloom etc and then said I could refer you to an MS specialist here and see you myslef in 3 months in the interim to keep a close watch if you like. So what started terribley actually turned out to be an okay situation. I’m so glad he didn’t tell me I’m a hypochondriac - I think I would have cried there and then. I’m pleased that I’m seeing an MS specialist and though I know its not a firm diagnosis I feel relieved in a sense that maybe I wasn’t barking up the wrong path thinking this might be MS.
I just hope the MS specialist I’m referred to is good and can tell me whether it might be MS or not.
Hi Reemz So glad that you seem to have got somewhere today and were not dismissed out of hand or told it is all in your head. Hopefully, the MS specialist is better placed to make a more definitive dx of what is wrong with you. Teresa xx
That’s a step further on Reemz, and you “seem like alogical happy person” (lol) - so that’s good. This IS one hell of a roller coaster ride eh? Good luck with the next step of the journey. Hope your parents surprise you by their response to the other matter. P’raps you could do the good news bad news thing. “Hi mum, dad - the bad news is that I might have MS but the good news is that have this wonderful man who will support me through the bad times”. (y’never know - it might work)
I’m feeling quiet positive. Of course I don’t want to have MS but I would rather know than not know if it is.
TF - I love your suggestion of doing the good news bad news thing. Apart from my parents aren’t that hot with medical knowledge so don’t know what MS is or what it means or is or even about. They think I can get cured my alternative meds whatevers wrong with me or believeing in god. Makes it difficult - their hearts in the right place I know all they want is for me to be better, but its not what I need to hear. You really made me smile though!
Oh well I’m just going to have to suck it up and tell them about my other half and wait for the explosion! Can’t believe I’m so calm - I don’t think its hit me yet.
My first post went missing, very strange! I just wanted to say that I am very gad that your appointment went well and that you are feeling more positive. Sam xx
I really do know that sinking feeling you described.
And, I also know the sheer relief when a neuro is actually interested in doing their job rather than taking the seeming accepted route with which the neurological community deals with limbolanders- telling them to go away and stop complaining because its too much effort to find out what is actually physically wrong with the patient.
It looks as if you are in a very good situation with this new neuro.I sincerely hope it is not too long before you get some answers.
You hit the nail on the head Tulip, it is a relief. I haven’t a definitive diagnosis but at least I know they believe I’m having problems and its not unreasonable to think it might be MS and even though the symptoms don’t tie in with the MRI findings at the moment they’re not dissmissing me. So some more waiting now but at least I’ve moved forward a bit.
No problem Karen. The forum does seem to eat the posts sometimes. Keeping my fingers crossed too - the reputation for Charring Cross seems to be quite good from what I’ve heard from yourself and others so I really hope they get to the bottom of this. I can’t express how relieved I am to be believed - I was so scared of being told its in my head.
Your is a very good post and one any person looking to escape limbo can learn from, thanks for sharing.
’ you seem like a logical happy person so I don’t think it’s anxiety or depression.’
Take note, though limbo can be soul destroying and fraught with anxiety it is how you conduct yourself with the neuros which does seem to have a big bearing on how you proceed OR don’t.
Hi Reemz, I know exactly what you mean when you said you were relieved to be believed. My neuro is an ms specialist and more importantly a human! He’s a soft spoken gent who put me at my ease and though it took a long time,to me anyway, got a dx. Good luck at Charing hospital. I’m so pleased for you, Chis
I didn’t hold it together very well when I went to ask my GP for a second opinion I was emotional but I did try to at the neuro even though inside I thought it wasn’t going how I planned initially. Maybe its because I accepted my tests weren’t showing much at all and I wasn’t disputing that and didn’t say I think it’s MS but rather what could be cuasing my symptoms. Who knows? If we could figure out neuro’s we’d all be getting somewhere quicker.
I guess trying not to get over emotional helps - and give eye contact and smile. He commented on this and said it reassured him I was happy and not depressed (god knows how).
I really understand what you said about being horrified because one GP at my surgery said not to include previous neuro’s letters and the other one actually did provide said letters, which the new consultant saw. However, like you things for me seem to be progressing (pardon the pun) positively.
I’m glad you had a positive experience in the end too. It makes the world of difference doesn’t it knowing you’re believed and that someone is trying to get to the bottom of it. It’s like a bit of that weights lifted off your shoulders.
I am in the exact same situation as you. MRI and lumbar puncture all normal and eye examination normal other than field of vision (I have multiple blind spots in each eye near my centre of vision for 2 months now, getting worse, amongst several non-eye symptoms). My neurologist dismissed me saying to go to the eye hospital again and vice versa. Last time I was with the opthamologist I actually burst out crying I was so frustrated but he didn’t help. I don’t know what to do.
