In Mountain View until the end of may, what test can I do/doctors can I see?

[seeing_info]

Hi There,

I was hoping for some advice from the knowledgeable denizens of Phoenix Rising

I am in Mountain View, California, until the end of May and was wondering what clinics/doctors I should go to?

A bit of background about myself.

1. Under 30 male, from Canada.
2. Got some sort of acute infection 9 years ago, which was followed fatigue, muscle weakness, disrupted sleep, memory issues, issues starting tasks, increased urge to urinate(this last symptom lasted only about one month).
3. Since then have gradually been improving.
4. By average standards, physically fit. Still have PEM (lasts about a day and quite tolerable) and occasional muscle weakness.
5. Most significant symptom is brain fog, memory issues, and issues with motivation
6. Occasionally experience pins and needles sensation in the heart area

Point 6 is what I am actually most concerned about. Of course, getting rid of the brain fog would be amazing, but that would involve treatment and I am guessing it's not really feasible over long distance. I have read that CFS/ME can be co-morbid with coxsackie-b virus, which can in turn cause pericaditiis and myocarditis. I have had an ECG done, which revealed a Wenckebach heart block, but the cardiologist said that since I don't have any other heart symptoms, it is not something that I should be worried about. However, obviously ( ) there was not test for inflammation of the heart muscle so the doctor didn't rule out that the heart block was caused by an ongoing infection. If it is an infection I would need to know how to prevent it from progressing.

Given my concerns, what doctor's/clinics should I try to see. Note also that Canada has socialized medicine, so there a lot of tests I can't do I Canada because I would first have to convince my doctor that they are necessary. He is a new doctor, and was the first doctor to suggest CFS, but told me directly that he only heard about it in Med school and doesn't know a whole lot about it. Obviously blood tests would be the easiest and most simple, but where? Can I just schedule a blood draw with the OMI?

Also, I might be coming back to Mountain View within a couple of month for a longer time period, so any long term suggestions would also be appreciated.

Thanks

 

[me/cfs 27931]

The Open Medicine Institute is in Mountain View, but like most ME/CFS speciality clinics, their doctors have wait lists of many months, if they are taking new patients at all.

http://www.openmedicineinstitute.org/the-clinic.html

 

[Mary]

@seeing_info - I don't think you can just schedule a blood draw at OMI - I'm sure you would need an appointment and that may take months to get. However, they may have a waiting list for cancellations so I wouldn't discourage you from contacting them. Hopefully they are taking new patients. And at the least you might be able to get an appointment for when you will be back in the area.

 

[Gingergrrl]

Obviously blood tests would be the easiest and most simple, but where? Can I just schedule a blood draw with the OMI?

Although they have a blood draw station, you cannot just schedule a random blood draw. If you want to go there as a new patient, they would schedule you an appt and you would send them a very thorough history and prior lab tests so they can read it in advance. But once you have your appt, they will no doubt drawn TONS of blood for testing!

Also, I might be coming back to Mountain View within a couple of month for a longer time period, so any long term suggestions would also be appreciated.

I agree with @Mary above and would call now to get on cancelation list (if they have one) and schedule an appt for the next time that you are back in the area. Best wishes and I hope you can get an appt.

 

[Mary]

@seeing_info - you also might check out Dr. Jose Montoya's office at Stanford: http://med.stanford.edu/chronicfatiguesyndrome.html

from what I have read on this board, you would not be able to see Dr. Montoya himself, but rather one of his nurse practitioners. (http://forums.phoenixrising.me/inde...rip-cost-to-dr-montoya-stanford-clinic.47701/) who may not be all that knowledgeable.

Also this person had a rather confusing visit: http://forums.phoenixrising.me/inde...fused-about-treatment-plan.51200/#post-845510

The reason I am suggesting you look into Stanford is that they might do the testing you are looking for. I don't know, have no experience with them, but you could do a separate post if you wanted to find out more info about what they do at Stanford.

 

[seeing_info]

Thanks everyone for their replies. I'll try to contact both Stanford and OMI.

 

[me/cfs 27931]

@seeing_info - you also might check out Dr. Jose Montoya's office at Stanford: http://med.stanford.edu/chronicfatiguesyndrome.html

from what I have read on this board, you would not be able to see Dr. Montoya himself, but rather one of his nurse practitioners.

Last time I looked into it (18 months ago), the wait time was 9-12 months just to get seen by one of Montoya's physician assistants. And the price quoted was almost double that of Open Medicine Institute.

 

[Diwi9]

@seeing_info - I scheduled an appointment with OMI in January, the fastest they could get me is this June. You can always see if there is a cancellation, but I'd get on the list now so you can have an appointment for your next visit. Good luck!

 

[seeing_info]

@Webdog what is the price range we are talking about with respect to both OMI and Stanford, if you don't mind me asking?

 

[me/cfs 27931]

@Webdog what is the price range we are talking about with respect to both OMI and Stanford, if you don't mind me asking?

Not sure about their current rates, but OMI charged a bit over $500 per appointment last year if I recall correctly. I believe I was quoted $900 or so from Stanford (18 months ago). But for me, the major cost turned out to be the testing, not the actual appointment costs.

 

[seeing_info]

Ouch.

Again, if you don't mind me asking, how much of that was testing (% approx), and how many tests were ordered.

 

[Gingergrrl]

Again, if you don't mind me asking, how much of that was testing (% approx), and how many tests were ordered.

My experience may differ from others (and a lot is dependent on which insurance plan you have as far as what tests are covered) but all of my blood work and other tests at OMI were covered and I only pay for office visits and phone calls. I have never been to the Stanford ME/CFS Clinic, but I did go to the another clinic at Stanford in early 2016, who told me on phone that they accepted my insurance but later retracted it and I ended up with multiple bills that added up to about $5K and it was a nightmare.

 

[Vojta]

OMI had about 3 month waiting time for dr.Kaufman 2 weeks ago. There is third younger doctor who may have shorter list. I will go to mountain view at the end of August with follow up in 4 weeks.