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Can I rely on the neurologist?

Hello!

I’ve just received my date to see the neurologist. It’s in June. I can’t help stewing on certain concerns!

Having read so many of the threads on here, I can see that seeing the neurologist does not necessarily mean I’ll get sent for an MRI automatically! It looks like a lot of people had to fight for the right tests!

This makes me quite scared, as I have had to fight tooth and nail for the right treatment of my mental health and I just don’t think I’ve got any fight left in me! I’m worried I’ll see the neurologist and he’ll just send me away.

i also understand that under NHS guidance, they have to see at least 2 lesions on the MRI, even though with private healthcare, if only one lesion is seen, they’ll still send you for a lumbar puncture and often make an MS diagnosis this way.

I would be very interested to hear people experiences or any information you may have.

Ps-my symptoms are: very bad confusion,using the wrong words, very forgetful (for example I often can’t remember where I live or what my house looks like), short concentration span, sudden numbness down both legs that causes me to fall over, pins & needles in hands and other stuff that I can’t remember right now.

thanks so much in advance xx

Hi Roseyposy Sometimes another doctor can ask for a MRI, if they think something needs investigating. I didn’t ask for a MRI or the appointment for the neurologist, I didn’t know why I had an appointment with the neurologist so it was a surprise and upsetting. I have now had the spinal tap, just waiting for the MRI. Back to you. You are very lucky to get an appointment from the neurologist so soon. They are very busy I received mine for April in December, he also asked for a MRI, blood tests and LP. Mind you my first MRI they did find legions. It seems that you are on the way to find out what you have it may not be MS as there are so many illnesses that have similar symptoms, but at least you are seeing a neurologist that’s the first step. It can take time it was my opticians appointment this time last year that I told the opticians about my double vision. So it not always a quick fix. I hope you don’t have to fight tooth and nail this time. Kay

Hello Roseyposy - sorry that you feel so unwell. I’ve been in the care of two neurologists and they have both been amazing. Have had several MRI’s and a spinal tap. I remember my GP saying that neurologists are clever people. They have to follow guidelines and investigate many possibilities. Amongst other tests I was also tested for HIV. It was thought I might have lupus, so I also saw a reumotologist (spelling?). Hope they get to the root of what is causing your symptoms soon. It’s easier to handle aches and pains once you know what you’re dealing with.

Hello Roseyposy

When you see a neurologist, s/he won’t be looking for a specific diagnosis. S/he will take a history from you (ie find out what has happened to you in the past and what symptoms have brought you to that appointment), then do a physical examination. This is generally things like various reflex tests, tests of balance, watching your eyes move, strength, pin pricks and many others.

At that point, the neurologist may have some ideas about what might be wrong with you and send you for a variety of tests. This could include MRI, lumbar puncture, nerve conduction, visual evoked potentials, blood tests and others. This is assuming they can identify from your physical reactions and signs that there is a neurological problem. If they can’t see anything wrong neurologically, then they won’t send you for tests.

Then you should have a follow up appointment with the neurologist. At this point, you may be diagnosed with something (possibly MS, but just as likely not). Or you may not be diagnosed at all. Either the neurologist will discharge you if they can find no clinical evidence for neurological symptoms, or arrange to see you again in maybe 6 or 12 months time.

So asking us how you get an MS diagnosis is coming at the problem from the wrong direction. Your symptoms may have MS as their cause, but the problem with MS is that many symptoms also occur in other diagnoses, some of them neurological and others not.

Diagnosis of MS is made using the McDonald Criteria, have a look at: https://www.mstrust.org.uk/a-z/mcdonald-criteria This is the case whether you see a private or an NHS neurologist.

You are likely to be seen sooner if you see a private neurologist, but any tests they refer you for are likely to be very expensive. An MRI for example will cost several hundred pounds.

If you want to try and speed up your initial neurology appointment, you could try to get your GP to ask the hospital to expedite your referral as an ‘urgent’ case. Or phone the hospitals appointments team and ask them if there are any appointments sooner than June.

Best of luck.

Sue

Thank you everyone. All your information is really helpful. I know that the neurologist will have an open mind as to what the diagnosis will be. To be honest, I’m expecting the them to tell me that he/she doesn’t think o do have anything seriously wrong neurologically, and I think that’s the thing that scares me the most! I’m scared that I’m going to be left to deal with these symptoms on my own. I have had that happen before, and only through sheer determination and several years of perseverance, was I eventually diagnosed with bipolar. I know that it is all completely unknown at the moment, as I haven’t seen the neurologist and I guess I’m not really looking for answers from this forum, more just a sympathetic listening ear! Haha! So thank you all for doing that! I shall report back once I see someone!!

Do come back and tell us what happens. And if you get any other symptoms that worry you.

Regardless of getting a quicker appointment, it’s a good idea to start keeping a diary or just a timeline of what has happened to you in the past, how long symptoms have lasted and whether they’ve dissipated or are still with you. That will help a lot when you get to the appointment. You’ll be able to easily run through what has happened and when.

Very best of luck, and don’t forget, we’re still here if you want to talk about what you’re experiencing.

Sue

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