Continuing the discussion from Clonus:
I had my private neurology appointment last night, was in and out in 20 mins. He took a brief history, listened to my symptoms then done a few tests, touch my nose etc. I metioned the physio had said about he had noticed clonus he said he didnt find that, it was even wrote down on the notes from my GP. Said something about reflexes were a bit brisk. Then told me he thinks its fibromyalgia and he would send a letter to the GP to prescribe medication, i cant remember the name, he said it was an anti epileptic/ anti depressant drug.
I asked if i could have a mri on my lower back as that was what the physio suggested but he said no. I really dont think my symptoms fit with fibromyalgia but i guess hes the expert.
I am still on the waiting list for the nhs not sure if i should cancel that now. Seems a bit pointless if this will now be on my record.
Hi @staceym Sorry to hear about your recent experience with your private neurology appointment. As you quite rightly say, he’s the expert but, even experts do get it wrong, occasionally. Though they don’t like to admit it! Nothing like a second opinion, of which you would be entitled to on the NHS. Might just be worth waiting to see a neurologist on the NHS. Mind you, as we know, neurologists work in both the NHS and private sector! How lucky do you feel? Because you might see the same person in the NHS! Wishing you well and hopefully you’ll get answers soon enough if you decide to go down the NHS road.
Hi Stacey,
How are you feeling about what the neurologist said? Did you have confidence in him?
It might be worth keeping the NHS appointment - no harm in someone else having a look 
Warm wishes
Alison
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If I’m being honest, I feel like I’m back at the start again, he was quite dismissive of everything I said. And I feel I have more questions than answers now.. I had heard of fibromyalgia but after researching today it seems like it’s a diagnosis given when they dont know what’s wrong with you.
It was just so rushed.. I will prescribe you some medication, thanks, goodbye.
I think I will wait for the nhs appointment to come through and see who the consultant is and decide what to do. I’m assuming the GP will be in touch so not sure if she will cancel the nhs referral now either. Why does it have to be so hard, I thought going private would have been easier to get tests done but seems that’s not the case.
Don’t let that one appointment put you off trying to get any answers for your concerns @staceym That’s the spirit..wait for your NHS appointment to come through and take that opportunity to get answers to all of your concerns. Like lots of things you have to have patience.. and in bucket loads at times in dealing with certain aspects of the health service. Wishing you well in your continued journey to get answers to your questions.
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Hi StaceyM, I’m sorry the appointment didn’t go well, what area are you based in and did you choose an MS specialist that also works for the NHS?
I went private initially, and to be fair I felt when I walked in the appointment that the first impression was “here’s another person that thinks they have MS”. He definitely rushed the first few tests but then came across a couple of real issues and kept revisiting the tests with the same results. I did get my MRI’S, then my diagnosis, then transferred me to NHS clinic for treatment.
Basically, what I’m trying to say is check out if the person you saw was MS specialist Neurologist not an ordinary Neurologist.
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What @Cavworld says about neurologists is a fair point. I have had a ms specialist neurologist over the years but currently my neurologist isn’t @staceym my current neurologist is a stroke specialist! Do you know what they were when you had your private neurology appointment?
So sorry you have been left in the lurch. It’s terrible to go into an appointment, hoping for progress, and feel you are being rushed through. Especially if you are paying for the privilege (20 minutes sounds very short for a private appointment).
Coming in a bit late on this one: I went private when I was trying to work out my diagnosis and… the first person I saw was an absolute disaster. He was supposed to be an MS specialist neurologist, but he didn’t look at my scans, or examine me, or basically lift a finger. He didn’t even get my name right.
Separately from that, I was also told I might have fibromyalgia, not by a neurologist - I think it was a GP or rheumatologist that mentioned that. As you say, it’s a diagnosis of exclusion: a label given when they have no evidence of anything else.
Later when I saw another neurologist, he told me that he “hated” fibromyalgia as a diagnosis, didn’t believe it. He was the one who pressed on with more MRI scans.
So… I reckon you should go ahead with your NHS appointment. Let’s hope it is not with the same person. They may or may not have access to what the previous person said. But either way, you can put across your version. Not all neurologists agree on.
And if you do have fibromyalgia in the end, you won’t have lost anything by double checking.
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It is so hard! Especially when you go in looking for answers and don’t feel listened too. As Leonora said, 20 minutes seems quick for a private appointment .
It might be worth checking with the GP that your referral to an NHS neurologist is still going through.
The MS Society and MS Trust websites are really good for reliable accurate information.
Sorry, I can’t remember all the points you made, and looking at the forum on my phone doesn’t allow me to scroll up and see your reply post.
Hang in there
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Funny you should say that, my name was mistaken as well, i think he called me by the previous patients name. He was an ms specialist neurologist as well. Based in Glasgow.
The appointment was at 7pm so he was probably wanting home.
I spoke to bupa GP today and went round in circles with them. Told them i disagreed with the neurologist and feel there hasnt been enough testing done before the fibromyalgia diagnosis. I Asked them if i should see a rheumatologist because from what I have researched that’s normally who you would see for fibromyalgia and her reply was they don’t deal with numbness.. so they won’t be able to help me. she’s now sending me to see someone for my lower back pain even though she said my lower back pain wouldn’t cause numbness above the waist. Feel like I’m fighting and getting nowhere.
Can anyone who had numbness on one side of the body constantly, hand numbness waking them during the night tell me what tests they had done? I really want to keep fighting this but I’m not sure what else to ask for. Thanks
Hopefully I might get a different neurologist through the nhs.
I know it’s really hard when you feel like you’re having to fight the system just to get a voice.
Would it be worth doing a bit of research about MS neurologists local to you? I’m presuming you’re in Scotland, if your earlier neurologist was in Glasgow (not the same person as mine, then).
If you could get in touch with some local people with MS, perhaps through a local MS society, perhaps they could tell you which neurologists do a proper job.
In my case, I eventually despaired so much I paid to go private a second time - but this time I did far more research before paying up. I looked for a neurologist with ongoing MS research interests as well as good patient reviews and the person I saw behaved very professionally (appointment took between 30 and 60 mins, from memory). There is a well-known MS centre in Edinburgh, I think - if that’s within reach, might be worth looking at whom you could see there.