Saw a neurologist on Saturday morning. I wasn’t hopeful going in as I had read some bad reviews of her from NHS patients and they were all true. I felt dismissed and left feeling more confused than when I went in.
She glanced at my MRI barely even looking at it and did a very brief exam. She said that my reflexes weren’t where they should be but she couldn’t see anything on my MRI. The MRI was done almost a year ago with no contrast.
She then went on to tell me that its purely functional and that I likely have Functional Neurological Disorder, Chronic Fatigue and Fibromyalgia (even though I have no symptoms of Fibromyalgia). She has discharged me back to my GP with the recommendation that I should see a rheumatologist to rule out connective tissue disorders and for me to be seen in a chronic fatigue clinic.
I didn’t feel listened to, she only took half my symptoms and kept cutting me off. It just felt like she wanted to be anywhere else but seeing me which other NHS patients reported (private patients left 5 start reviews saying she was fantastic). She didn’t seem to care that I still can’t see properly and that I’m 26 and have episodes where I can barely walk and have to use a stick.
Friends have said I should ask for a second opinion as I have moved recently and now have Addenbrookes as my nearest major hospital but I just feel so deflated and it’s like I’ve run out of fight.
Hi PurplePunk;
Definitely request a second opinion, and push for an up to date MRI (Brain and Full Spinal) as well. It’s difficult, we know the frustration and the struggle to be heard, but its worth fighting to get a definite diagnosis, whatever that may be. While you are waiting on neurology 2nd opinion/re-referral; see the Rheumatologist(s), and Chronic Fatigue Clinic - its all ammunition to you - especially if the rheumatologists rule out any connective tissue disorder, Lupus, RA etc. As for the Chronic Fatigue Clinic - they may have some useful input regardless of the cause of your Fatigue.
Hi Theresa,
Thanks for your response. I think I will ask for a second opinion and see whether my GP will refer to rheumatology and chronic fatigue clinic. Just got to wait for my discharge letter to reach them/me and I’ll book an appointment
The attitude of some NHS consultants reminds me of a few lines in Only Fools and Horses ( yes, I’m of that generation) when Del Boy says to a grumpy/rude woman at the supermarket checkout ‘ did you get your money back’, she says ‘what’ and he says, ‘you know, did you get your money back , did you get it back from the charm school because it obviously didn’t work’.
More seriously, yes ask for a second opinion and also follow up the other possibilities. Also, if you can then ask the charming neurologist what on Earth she meant by ‘purely functional’ ? Most MS symptoms are purely functional
I have absolutely no desire to see her again. She was rude and really hard to understand (thick accent). But apparently my symptoms are purely functional! She had no desire to do any further tests and just fobbed me off back to my gp. She also definitely needs a refund from whatever school taught her bedside manners!
Good thing is I’ve moved recently and won’t be referred back to that hospital as it’s not in my area anymore.
After feeling very deflated I’m feeling like I’ve got some of my fight back today. My colleagues at work really encouraged me to get a second opinion but also to follow up with the other conditions she threw around. I’m fairly certain I don’t have fibromyalgia as I don’t have constant pain.
I do think it would be interesting for someone to do a bit of research on the psychology of consultants. For different reasons I’ve seen a few in my life : one answered one of my questions with a slightly snappy ‘I’ve already told you the answer to that, two had a disagreement in front of me about my course of treatment, and I know from my wife who used to be a nurse that there can be quite a few petty rivalries and fallings out between consultants. Some are good - very good but others ………
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