Need help finding a doctor

[Springbok1988]

Hello everyone,
I’m a 32 year old male in the Kansas City, KS area. I’ve been nearly housebound for over a year now.
I’ve been on the waiting list to see Dr. Joseph Brewer in Kansas City for 9 months. It doesn’t sound like I’m any closer to actually getting an appointment.
I can’t find any other doctors who are comfortable with (or know anything about) ME/CFS. The best I’ve found is a nurse practitioner who trusts that I’ve done my homework and has run whatever blood tests I’ve asked for. I tried going to an immunologist/rheumatologist who didn’t have a clue what to do with me.
What should I do? How do I find a doctor?
Thank you in advance.

 

[Alvin2]

In my experience you want to rule out anything that is treatable and may be causing your symptoms. Get a referral to an endocrinologist and ask them to check everything, also an immunologist should be asked to run a broad based panel (did they do that already?). An MRI of the head would not hurt either (whole body MRIs are very hard to get).
If you can score genetic testing that would be a bonus as well. That said i don't know if discrimination based on genetic test results is still a thing in the US, you don't want to throw away your future for nothing.

That said i have no idea what medical coverage you do or don't have. Don't ruin your financial future chasing phantoms, you need every dollar you can get to survive ME/CFS.

 

[Springbok1988]

The immunologist checked:
Deamidated gliadin antibodies
Lactate dehydrogenase
Uric acid
IgA, IgG, IgM

I’ll request a referral to an endocrinologist next time I’m at the doctor’s office. Would it make sense to request endocrine tests with my PCP before I make the appointment with the endocrinologist? That way the endocrinologist would already have some data to look over on my first appointment.

What level of genetic testing do you suggest? I‘ve had 23andme done and recently discovered that I have the C677T mutation in my MTHFR gene. I don’t know what else to look for, though. I would be willing to pay for whole genome sequencing If it could help.

 

[Alvin2]

The immunologist checked:
Deamidated gliadin antibodies
Lactate dehydrogenase
Uric acid
IgA, IgG, IgM

I am going to defer to other PR posters who know this stuff better than i do.

I’ll request a referral to an endocrinologist next time I’m at the doctor’s office. Would it make sense to request endocrine tests with my PCP before I make the appointment with the endocrinologist? That way the endocrinologist would already have some data to look over on my first appointment.

I wouldn't, let them start with a blank slate and do their thing.
I have found that for some doctors when you interrupt their routine it throws off their entire game.

What level of genetic testing do you suggest? I‘ve had 23andme done and recently discovered that I have the C677T mutation in my MTHFR gene. I don’t know what else to look for, though. I would be willing to pay for whole genome sequencing If it could help.

This is one i cannot advise on, i don't know what else beyond what you have done is available.

 

[Judee]

I’ve found is a nurse practitioner who trusts that I’ve done my homework and has run whatever blood tests I’ve asked for.

I think a nurse practitioner in some states can still prescribe medications.

If you cannot find a suitable doctor, for the time being you could still see if she would be willing to help you try somethings that have helped others with this disease.

That is what I would do if I couldn't find anyone else just now.

Edit: Of course, it would be helpful to make sure your insurance would cover it.

 

[geraldt52]

... Don't ruin your financial future chasing phantoms, you need every dollar you can get to survive ME/CFS.

I don't think that that gets said often enough. If "CFS specialists" were routinely curing anyone we wouldn't all still be here...

 

[Sushi]

I don't think that that gets said often enough. If "CFS specialists" were routinely curing anyone we wouldn't all still be here...

Yes, good point. Many of us have gone through the whole process and wait to see an ME/CFS specialist, spent a lot of money, tried everything available, but since they don't have the answers yet, we are still sick. I also have a nurse practitioner who is sympathetic and will prescribe things for me to try if I can back it up with research. It is hard to wait, but hopefully we will get some answers from research in the next few years.