Dr. Montoya visit soon...Neurologist too?

[HTree]

Hi Friends:
I am gearing up for a appt with Dr. Montoya at Stanford.
Has anyone here consulted with him before? And tips, and was he helpful?

Second Q:
I have been thinking about Monotya, as well as, if i can afford it, seeing Klimas.
Both these wonderful MDs--I hear they are both kind people-- There backgrounds are immune focused.
I am wondering, given the other major system affected I feel like is ANS-related :
(blood flow, sleep, etc--neuro regulation of these things are not working properly for sure!)-
So wondering if good idea to see a neurologist-- . I saw one who was good but unaware of CFIDS/ME. I wondering if there is a neurologist who has particular experience with our kind? I'm in New England, but curious if any such MD with neuro background and CFIDS familiarity out there (in the US).

Thanks much all.

Peace,
H-tree

 

[Tony Mach]

I'm from Germany, so this is all second hand information, that I read somewhere (and possibly remembered wrong...)

1. Neurologist

I think seeing a neurologist is a good idea if you want a differential diagnosis. For example, if your symptoms could be MS as well, it is good to rule this out. A good neurologist might be able to diagnose your ME/CFS problems, but I don't know if there are any neurologist who can treat ME/CFS.

Finding a good one is difficult and your ME/CFS doctor (whether Montoya or Klimas) will help. She/he knows IF you should see a neurologist (because if they suspect it might be something other than ME/CFS) and I guess they know WHICH neurologist to send you to - let them coordinate it.

2. Montoya/Klimas

I would choose one doctor, see were she/he goes with diagnosis and treatment. Try the treatment for some time and see were it goes, what it does for you. If you don't see that the treatment goes anywhere for you, then change - but don't have two ME/CFS doctors. ME/CFS treatment is a lot of fine tuning (unless you have access to Ampligen and it works for you), so I guess having two doctors is like having two cooks, trying to cook two different meals in one pot...

Personally, if I had the choice, I would choose Klimas over Montoya. Montoya seems like a good ME/CFS doctor but I guess he is relative fresh to the ME/CFS game. From what I read, Klimas has so much more experience, especially with regards to treatment. Montoya operates from the big Standford, which I would suspect means he has to be more conservative in his treatment approach and has to use "what is known to work". Well, we don't have too much treatments that are known to work in ME/CFS, so the question is do you want your doctor to try an "experimental" treatment that might or might not work? If yes, then Stanford (or any other big name) is not really the place to look, I would guess.

Depending on your finances and ability to travel, I personally would (besides Klimas) consider Petersen (he uses Ampligen if I'm not mistaken) or Chia.