Neurologist keeps changing mind

Hi, I have been seeing neurologist since early 17. I have had MRI and repeat MRI with contrast showing no active lesions. I was told at my last neurology appointment he was 99.9% sure I had ms due to lesions on the brain, previously I was told there was definitely nothing wrong with me but after pushing for MRI this is where lesions on my brain where found. I have recently had my appointment and in the course of the appointment I actually had to outright ask my neurologist if I had ms or not as I felt my appointment was going no where. He said I did have then 5 mins before the end of the consult he changed his mind AGAIN to say it was CIS. Problem is i have a copy of my MRI on disk and on it contains a report to radiographer saying I was and I quote “Recently diagnosed with ms” but I haven’t been and he’s now gone back on this so I’m now totally confused!! Should I ask for second opinion as I obviously do not want to have ms but I don’t trust someone who keeps changing there mind. Please help I am making myself Ill over the whole thing!

I would definitely get a second opinion. My first neuro was useless and said I suffered with hemiplegic migraines. My new neuro said that was a lazy diagnosis. My new neuro seems great. He has already asked me far me questions and is sending me for new tests. :slight_smile:

fingers crossed you get some answers. Xx

Hi Yvy

I probably wouldn’t necessarily start again with a new neurologist as a first step, but first get a definitive answer from the current doctor as to what he really thinks.

If you’ve already had a copy letter sent from the neurologist to your GP, I’d expect that to state what he thinks.

If you haven’t had this, or it’s very wish-washy, then consider writing to the neurologist to get some clarification from him. Ask him to tell you a) what the results of the tests were in plain English and b) whether he is diagnosing you with MS or CIS. Lastly, you could perhaps ask what treatment (ie DMDs) are on offer. If the diagnosis is CIS, you should still be able to start on a limited number of DMDs, whereas if the diagnosis is MS, then the list of potential drugs is longer.

Following an attempt at clarification, if you don’t get anywhere, then see your GP and ash him/her for advice. If you copy your GP into your initial letter, that at least leaves a paper trail.

If you went straight to trying for a second opinion, in all likelihood, you’d have to go private and that would then also entail you having to start the process from scratch.

An alternative would be if you have a good relationship with your GP, try to get them to do the investigation on your behalf. This might not be possible, as we all know, our GPs are incredibly busy and don’t necessarily have the time or will to chase things like this up!


Assume you haven’t had any other tests like Visual Evoked Potentials (VEP) or Somatosensory Evoked Potentials (SEP) tests or Lumbar Puncture LP?

Hi. I had lumbar puncture but none of the other tests you mentioned which is frustrating as I have slight numbness. Lumbar was normal. Thanks everyone for your responses.