Seeing a neurologist - any tips?

I'm seeing a neurologist for the first time since the diagnosis was made and since I know many of you have seen at least one before, I'm hoping you might have some tips to what I should ask or make sure to mention while there.

I have some issues with my spine/back like I mentioned in another thread so that's an obvious one, as well as the cognitive issues and feeling like every nerve in my body is being deep fried when I'm overdoing it. However I'm not sure I have the full view of everything that might be of interest to her (or me) and I would like to make the most of this opportunity

 

I've seen a few ...my biggest advice...don't go in with high expectations. They tend to be a bit like psychiatrists...woolly answers to direct questions etc.

I hope you get a good one, but so far out of the 10 or so I've seen here in the UK they have been pretty poor at helping and quite dismissive.

I would just listen and see what they say and record their comments. Perhaps prepare your questions in writing first. If they don't answer your questions, give them a copy?

Have you had an MRI or nerve conduction tests? One of the things I wished I had done was ask for a copy of the report and test results when I had these done.

 

Yes, be prepared to provide proof that ME is not psychosomatic

 

Thank you for taking the time to help

My expectation is actually just that, that she'll be like so many other doctors and look down her nose at me like I'm wasting her time. That is exactly why I want to be well prepared and hav specific issues to ask about. She might be really nice, I'm just not going to pin all my hopes on that.

I have not had any of those done. Or rather, I had an MRI but that was live image for my heart (they suspected foramen ovale) so not too relevant.

Fortunately this is through my health insurance (a very service minded company since we all have free, decent health care anyway) and they will require a thorough report from her as well as making sure I get copies of everything.

 

That's probably a good idea! I'll bring some references just in case... The climate for ME patients has improved a lot in Norway, but not everyone got the memo

 

This is great. Luckily I have already bee assessed by a psychologist and have it on paper that I'm not depressed or anything else I think I'll have more issues with the fact that I look super healthy and energetic even if I feel like I'm dying.

 

Hi @andypants,

I wouldn't lead with anything non-specific like cognitive fog, fatigue or headache as a primary complaint. Don't even bother bringing up CFS/ME unless you have to.

Any symptoms you might have like visual disturbance, muscle weakness/burning, tingling, numbness etc. is probably more likely to lead to further investigation, if that's what you want.

Ryan

 

Very good point. I have all of the above. I'm not sure what I can get out of further investigation, but it could be worth a try while it's free of charge

 

I wouldn't, i have found most docs believe the flow of medical information only goes from doctor to patient so won't take seriously when you present anything new to them.

That said i would suggest minimizing the ME/CFS diagnosis so they will do proper investigations first and if it doesn't work out look for another neurologist. Its a headache but the only way to get anywhere, my experience has been its a waste of precious energy and time to stick with someone who is not useful, they don't get more useful over time, they actually get frustrated with you and become less useful.

All that said @andypants your symptoms are very similar to what I had before i was diagnosed and was burning the candle at both ends and in the middle. Also my pain i have been going to a good chiropractor who has been very helpful but she says unless i can do the stretches and strengthening exercises i can't achieve a permanent fix (which i can't do so its a maintenance thing with regular appointments until there is an ME/CFS treatment, she gets ME/CFS so thats very helpful). Finding a good chiro who has shed the nonsense from the 1800s and actually knows what they are doing is the tricky part, at least around here.

 

That's my experience too. I have a great chiro and it helps a lot, however right now it's too much for me to go regularly so I depend on my portable sauna to keep from seizing up. It's not perfect but it keeps it under control A good osteopath is great too. I actually did the crash and burn cycle for years before I got ME, so by the time I got sick I had already learned to manage severe burnout. The journey to learn pacing was therefore halfway done by the time I got ME. Lucky! Sort of.

I'm going to the neurologist for a so called second opinion on my diagnosis, so she probably knows I'm already diagnosed with ME. I've thought on it for a year while I got all the basics in place and found my baseline. It's offered by the insurance company as an extra service, they have no monetary benefit of me going to more doctors. I'm taking advantage of it as an opportunity to get checked up on, but I'm not really expecting anything to come from it. Just seems stupid to let free, private healthcare go to waste when there is a chance I might discover or learn something. They'll probably do blood tests as well, which means updated values on a lot of stuff the GP won't check for "no good reason"

 

Fair enough, though it will come down to luck if the neurologist knows enough about ME/CFS to not be useless or even counter productive

 

Ask for neurocognitive testing. Ask to rule out similar disorders such as Multiple Sclerosis, Myasthenia Gravis, Lupus, Behcet's Disease, Ehlers-Danlos syndrome, sleep apnea, narcolepsy, etc.

 

I wouldn't mention that you have ME/CFS. I made that mistake and the appointment ended very quickly after that. It didn't matter what I said, the neurologist just kept repeating that I was depressed and 'of course you feel pain when you're depressed'. An ENT later diagnosed the pain I was having as nerve pain caused by dental work.

 

Bizarre, why would you feel pain due to being depressed and why assume it wouldn't be the other way around?

Is depression the only caused of pain in that docs mind?

 

very good point

 

I always mention I have ME/CFS, and based on their response, either keep them or find another.

They don't have to be knowledgable, but if they aren't at least open to the idea that ME/CFS is an actual medical condition and willing to learn, there really is no point.

 

There is a point, if I have something in addition to ME/CFS i want them to find it instead of failing to look. That said i agree that if they are useless move on.

 

Good luck with the appointment. I've got a follow up appointment with a neurologist next week. Having met the guy once already, my expectations are very, very low indeed.

 

If your onset was infectious, or post-infectious, and was relatively recent (like a month or so ago), they might want to do a spinal tap to rule out any recent cerebrospinal infection. I had one done about a month after onset, and though it showed no pathogens, the protein level was mildly above normal (well below what you'd see in encephalitis). Elevated CSF protein is something that has been seen in some ME/CFS patients, but it is not so common as to be diagnostic. http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017287

My symptoms were classic ME/CFS, but this was in the early 80's, pre-Lake Tahoe, when the condition was virtually unknown (and unnamed) in the U.S. At the time my neurologist seemed most interested in investigating "temporal lobe seizures," but there was no evidence of such on my EEG.

The main benefit from seeing a neurologist is to rule out testable neurological diseases. One of my main symptoms was dizziness, and doctors could visually observe that I had a degree of nystagmus. Still, I had to go to a major ontological center to get confirmation that there was a measurable impairment of the balance centers in both inner ears.

Personally, I would pretend that I'd never even heard of ME/CFS - at least until all the investigations have been done. I think you're more likely to get an objective assessment that way.