Seeing a neurologist - any tips?

[TigerLilea]

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.

I had a GP years ago who was sending me to a specialist and she advised me not to mention ME/CFS if I wanted to be taken seriously. She never knew about the neurologist incidence as it was my dentist who had sent me for that appointment.

 

[andypants]

@Forbin it’s been about 20 months since my onset. Thank you for the tip about ruling out other conditions, I think that will have to be my goal going in.

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

Probably true. I wonder if presenting it as if I’m challenging my diagnosis might be more productive? Given that she will already know I have it.

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.

This is super helpful! Writing a list and checking it twice Thanks!

I wouldn't mention that you have ME/CFS.

She will already know, she has my file. However, I don’t have to say I agree with my earlier diagnosis, or can at least downplay it.

@Arnie Pye I’m sorry your doctor doesn’t have a clue. Thank you and good luck to you too!

 

[Squeezy]

I think that presenting like you're challenging your diagnosis might be a good approach to take. Since there's no definitive test for ME, how can you be sure you don't have one of the other neurological diseases unless you are tested?

Surely a top doctor such as she can see that your symptoms are such that it's the responsible thing to do?

 

[Nellie]

Not just for a neurologist, but I would advise anyone seeing a specialist to request a copy of any letters written to your GP. Few have been surprised at my request and they have all complied.

 

[Alvin]

Probably true. I wonder if presenting it as if I’m challenging my diagnosis might be more productive? Given that she will already know I have it.

I don't agree, if the neurologist believes the CBT/GET crap then your giving them an excuse to dismiss you. In my experience dealing with many, many specialists its best to mention your symptoms, what tests you have had done and ask them to try to get to the bottom of it. The reason this is better then starting with ME/CFS is if the doc sees it in your chart they might ignore it and do tests on you but if you bring it to the forefront they may latch on to it then the opportunity is wasted because your diagnosis is "solved". That said they may notice and latch themselves, but the idea is you don't make it seem big unless they probe it, because if its a "minor" constituent to them then they may not hold it against you as much because they may just think some doc added it on not that its your major issue.
I'm not sure if that makes any sense, i'm kinda mentally drifting today.

Surely a top doctor such as she can see that your symptoms are such that it's the responsible thing to do?

In an ideal world doctors would have this much sense, in our world only a few percent do. If its ME/CFS already diagnosed then they just need to parrot it, and if they believe in CBT/GET then they will advise to do this and diagnostics are over. If its on the chart but not emphasized but the symptoms the patient has are serious they are more likely to start digging because perhaps its just a adjunct diagnosis. Thats basically what the OP should be going for because even if the doc knows what ME/CFS is at a high level its practically human nature to latch onto the obvious and ignore warning signs.

Not just for a neurologist, but I would advise anyone seeing a specialist to request a copy of any letters written to your GP. Few have been surprised at my request and they have all complied.

I agree, i actually ask for all test results and reports (family doc has been good and neurolgist's hospital has them online) so when i go to a new doc it saves time in them requesting them and needing another appointment to go over them, saving time, and the energy of another visit and hopefully speeding diagnosis.

 

[Inara]

Hi @andypants, how did your appointment go?

 

[andypants]

Thanks for asking, @Inara - I postponed it until January to avoid overdoing it right before Xmas With the traveling and the stress of being evaluated like that it’s better left for a month when nothing else is happening

 

[Inara]

Reasonable. If you would be willing to report, I'm interested. Best wishes for your appointment!

 

[healthforall]

@Forbin it’s been about 20 months since my onset. Thank you for the tip about ruling out other conditions, I think that will have to be my goal going in.


Probably true. I wonder if presenting it as if I’m challenging my diagnosis might be more productive? Given that she will already know I have it.




When you see the doctor then you'll decide which scenario you should follow depending on the impression you'll get ,like her facial expression,body language etc.I don't think it is necessary to say too much or downplay CFS.Maybe you can say that you want to make sure that you don't have another condition that you can/should be getting treatment for.It is her responsability to help you.Place more emphasis on the symptoms.You don't know what she thinks of CFS maybe she is sympathetic you can decide then whether to mention it after mentioning the symptoms you would like her to focus on.
After years of not seeing a doctor(close to two decades),I saw a neurologist and a pathologist last year.I Live in Greece and even though I don't have a lot of praise for this government(or any greek government in recent memory) they allowed uninsured individuals to have Free access to healthcare and because of a headache on the right hemisphere and difficulty in absorbing NEW information I decided to go to a neurologist who ordered a blood test an MRI and some test to check my carotid artery and because of the blood test I went to see a pathologist who ordered more tests.I mentioned to both those young doctors that I was dagnosed with CFS in the early 90s in Australia.I don't know if we have CFS experts in Greece.To my surprise I didn't experience prejudice by either doctor maybe because they are young and open minded and they are not blase and tired.In your country you probably stand a better chance of finding a doctor who is not prejudiced.In my opinion you should prepare to talk about your symptoms and if you feel it's ok you can mention CFS.

 

[andypants]

I finally saw the neurologist yesterday. She was nice and professional, took me seriously and seemed to respect my own knowledge and research. Not bad. We agreed that the object of the evaluation should be to rule out any missed conditions or comorbidities.

All responses were normal, except for a slightly slow reflex reaction. She ordered me an MRI just to be sure nothing is up, which is nice because my insurance pays for it and it would be great to have that on file. She prescribed migraine meds to try the next time I have one of my ME headache attacks, to see if they can possibly lessen or shorten them down to give me some relief. With good pacing I don't have them very often or as severe as I used to, but they are still horrible so worth a try. She is skeptical to Mestinon for POTS, but didn't object to me trying it (already prescribed by my GP).

All in all a good experience. She asked about LP, mostly out of curiosity I think, but seemed genuinely horrified when I explained how they make people sign a statement about their guilt if they don't get well and how it makes most people with ME worse. Hopefully she's now one more slightly better informed doctor.

 

[Alvin]

I finally saw the neurologist yesterday. She was nice and professional, took me seriously and seemed to respect my own knowledge and research. Not bad. We agreed that the object of the evaluation should be to rule out any missed conditions or comorbidities.

All responses were normal, except for a slightly slow reflex reaction. She ordered me an MRI just to be sure nothing is up, which is nice because my insurance pays for it and it would be great to have that on file. She prescribed migraine meds to try the next time I have one of my ME headache attacks, to see if they can possibly lessen or shorten them down to give me some relief. With good pacing I don't have them very often or as severe as I used to, but they are still horrible so worth a try. She is skeptical to Mestinon for POTS, but didn't object to me trying it (already prescribed by my GP).

All in all a good experience. She asked about LP, mostly out of curiosity I think, but seemed genuinely horrified when I explained how they make people sign a statement about their guilt if they don't get well and how it makes most people with ME worse. Hopefully she's now one more slightly better informed doctor.

Very nice, an almost perfect appointment

I found methylfolate (or folic acid in a pinch) helped the headaches (not sure if i mentioned it before or not). I take it daily, tried stopping, they came back
Also get a copy of the MRI images afterward if they will provide them, so if you get a second opinion on them they are handy, and try to get the reports from the MRI and what the doc sends to your GP. The MRI report will likely state more detail the doc will leave out because they don't consider it mattering (i have an Arnold Chiari malformation for example, in the report, not told to me)

 

[andypants]

Very nice, an almost perfect appointment

I found methylfolate (or folic acid in a pinch) helped the headaches (not sure if i mentioned it before or not). I take it daily, tried stopping, they came back
Also get a copy of the MRI images afterward if they will provide them, so if you get a second opinion on them they are handy, and try to get the reports from the MRI and what the doc sends to your GP. The MRI report will likely state more detail the doc will leave out because they don't consider it mattering (i have an Arnold Chiari malformation for example, in the report, not told to me)

Hm, maybe it’s the folate that has helped my headaches? I started taking methylfolate a short time before they lessened. I have high folate levels now and stopped taking it, that could be why I just had my first attack in months a few days ago. Will keep an eye on this, thanks!

She sent me a copy of her write-up from yesterday and said she will call me with results if there is something that needs to be checked out AND if there’s something that doesn’t but that should be explained (like your malformation that you subsequently discovered and needed to research). If it’s too complex to explain on the phone she will call me in so she can show me the images.

I will ask for a copy of the images and the report, like I did when they MRI’d my heart. Good advice, thanks

 

[Alvin]

Hm, maybe it’s the folate that has helped my headaches? I started taking methylfolate a short time before they lessened. I have high folate levels now and stopped taking it, that could be why I just had my first attack in months a few days ago. Will keep an eye on this, thanks!

The theory is high homocysteine is causing it. Woks best combined with B12 (i take 1000mcg sublingual daily). Methylfolate is preferred over folic acid because no conversion step is needed and high folic acid levels over the long term may have negative health implications.

She sent me a copy of her write-up from yesterday

Wow, thats very impressive, i usually have to jump through hoops to get the reports

and said she will call me with results if there is something that needs to be checked out AND if there’s something that doesn’t but that should be explained (like your malformation that you subsequently discovered and needed to research). If it’s too complex to explain on the phone she will call me in so she can show me the images.

She sounds like a good neurologist

I will ask for a copy of the images and the report, like I did when they MRI’d my heart.

Cool

Good advice, thanks

Anytime

 

[Inara]

Wow @andypants, so happy for you!