Another day, another doctor....

[lift]

to add to the scrap heap of useless turds. So this latest Dr I am seeing seems to want to distance herself from the CFS diagnosis. Initially it seemed like she wanted to exhaust all avenues(which is not a bad thing) before giving the diagnoses, but now I'm not actually sure that's the case.

Currently I have two issues going on atm, CFS and high blood pressure. She said "it's very unusual for someone your age to have chronic fatigue" which is untrue. I'm 33, so this statement kind of shows her ignorance in this area. She also wouldn't even give me a referral to the new CFS clinic at Griffith University, which I find completely ridiculous.

Every time I go there it feels like one way traffic. Like she hurries things along, it always ends up being a 5-10 minute appointment. I've been there 6 times and I dont think we've really had a thorough conversation about which direction to go for the CFS. In regards to the high blood pressure, we have done some tests for it(ambulatory BP monitor, blood, urine tests) and i am getting a referral for that. Which is why I have been giving her some slack, but to be honest, the only reason my high BP was discovered was because I asked for it to be checked at my 3rd visit.

Another example is I had a list of 5 things I wanted to tested, one of which was MTHFR gene mutation, if she had bothered to listen to me she could have included it in the last blood test. I mean sure, i was getting heaps of things tested already, but why not one more thing? a gene test you would only do once, and one completely relevant to my illness. It just pisses me off, i feel like i cant have a free flowing conversation with her.

7 doctors in 2 years, completely useless...

End of rant.

 

[Valentijn]

@lift - I suggest going in until every symptom is resolved. It is impossible for her to resolve your symptoms, of course, so at some point she should get fed up and be quite happy to refer you to someone else. Assuming you can't just get a useful GP instead

 

[alex3619]

In Australia the MTHFR gene test is discouraged, and its fee for service - usually its not covered by insurance. Further, when I was tested they only looked at 6 snps. Ridiculous!

If you want referral to the new NCNED clinic, then find another doctor, or contact the clinic and find relevant doctors in your area. Do be aware though that they cannot offer cutting edge treatment - but I bet they do have cutting edge testing, and getting better all the time.

 

[lift]

Valentijn, I could tell you the stories of my last 6 attempts to find a useful GP and you would laugh.

Alex, in that case is it better to just get 23andme for mthfr? Well cutting edge testing sounds sexy to me, I'm up for it. BTW I'm in Bris too, hook me up with your dr's details if it isnt gary deed.

 

[Butydoc]

In Australia the MTHFR gene test is discouraged, and its fee for service - usually its not covered by insurance. Further, when I was tested they only looked at 6 snps. Ridiculous!

If you want referral to the new NCNED clinic, then find another doctor, or contact the clinic and find relevant doctors in your area. Do be aware though that they cannot offer cutting edge treatment - but I bet they do have cutting edge testing, and getting better all the time.

Hi Alex3619,

I'm new to the understanding of the snps. Have people with cfs/me who had the genome analysis actually improved medically because of the actions they have taken from this information?

Best,
Gary

 

[SOC]

Hi Alex3619,

I'm new to the understanding of the snps. Have people with cfs/me who had the genome analysis actually improved medically because of the actions they have taken from this information?

Best,
Gary

The MTHFR defect in folate processing is even accepted as an established problem by my severely evidence-based medicine GP. It may be that extreme EBM doctors are primarily concerned about it with regard to fetal damage during pregnancy, but they do accept that it is a problem that can cause low folate and possibly functional anemia (due to reduced ability to process B12 into the cells, I think..?)

I doubt treating the MTHFR defect with methyl folate (and methyl- or hydroxy-B12..?) will cure ME/CFS, but a number of people with the defect feel much better by improving their folate/B12 chemistry.

It's also very important to know, regardless of ME/CFS status, that you have the defect if you are a female of child-bearing age or if you might pass on the defect to a daughter.

 

[SOC]

Alex, in that case is it better to just get 23andme for mthfr? Well cutting edge testing sounds sexy to me, I'm up for it.

I first found out I was heterozygous and my daughter homozygous for the MTHFR 677T defect by 23andme. My doctor didn't quite trust the results and ordered the much more expensive MTHFR 677T-only test via Quest (iirc). The results were exactly the same and I got a lot more information from the relatively cheap 23and me test.

 

[alex3619]

Hi Alex3619,

I'm new to the understanding of the snps. Have people with cfs/me who had the genome analysis actually improved medically because of the actions they have taken from this information?

Best,
Gary

People have improved, and there was one small study a couple of years back to show that therapy can help. Very few appear to make a full recovery, and it is unclear from formal studies what percentage this might be, or even if treating this problem led to recovery. There are lots of threads on this.

I think MTHFR issues are a risk and exacerbation factor, but not fully causal. As a result treating them is not very likely to result in cure, but it might if someone is close to recovering anyway. Yet we don't know as proper large formal studies are only now being considered or underway. All this is still very new. A decade ago I was debating this possibility online, but nobody knew very much.

Yet knowing there is a problem might assist with medical advice ... if the doctor has a clue about these issues.

 

[minkeygirl]

to add to the scrap heap of useless turds.

End of rant.

Thanks for the laugh! My sympathies.

 

[AndyPandy]

to add to the scrap heap of useless turds. So this latest Dr I am seeing seems to want to distance herself from the CFS diagnosis. Initially it seemed like she wanted to exhaust all avenues(which is not a bad thing) before giving the diagnoses, but now I'm not actually sure that's the case.

Currently I have two issues going on atm, CFS and high blood pressure. She said "it's very unusual for someone your age to have chronic fatigue" which is untrue. I'm 33, so this statement kind of shows her ignorance in this area. She also wouldn't even give me a referral to the new CFS clinic at Griffith University, which I find completely ridiculous.

Every time I go there it feels like one way traffic. Like she hurries things along, it always ends up being a 5-10 minute appointment. I've been there 6 times and I dont think we've really had a thorough conversation about which direction to go for the CFS. In regards to the high blood pressure, we have done some tests for it(ambulatory BP monitor, blood, urine tests) and i am getting a referral for that. Which is why I have been giving her some slack, but to be honest, the only reason my high BP was discovered was because I asked for it to be checked at my 3rd visit.

Another example is I had a list of 5 things I wanted to tested, one of which was MTHFR gene mutation, if she had bothered to listen to me she could have included it in the last blood test. I mean sure, i was getting heaps of things tested already, but why not one more thing? a gene test you would only do once, and one completely relevant to my illness. It just pisses me off, i feel like i cant have a free flowing conversation with her.

7 doctors in 2 years, completely useless...

End of rant.

Hi @lift

I ended up going through 23andme, genetic genie and promethease and found out a lot of useful information. I took this information with me to see Dr Cabena at CFS Discovery in Melbourne and we are currently in the early stages of testing and working out a way forward. I didn't need a referral to Dr Cabena but understand that you need one for NCNED.

It is hard to find a decent GP who has any clue about CFS/ME. I still haven't found one where I live. The best I have managed is a sympathetic but clueless one who unfortunately recently moved interstate. Recently trialled and dispensed with a clueless and arrogant one and about to substitute in a clueless and kind one who is potentially malleable. I gave the arrogant one a copy of the ME International Consensus Primer for Medical Practitioners and he reacted as if it was a funnel web spider. Makes my low volume blood boil!

You might be able to find a good GP via someone else here on PR or by contacting your Qld CFS association if there is one.

I wish you luck and share your frustration.

 

[Butydoc]

People have improved, and there was one small study a couple of years back to show that therapy can help. Very few appear to make a full recovery, and it is unclear from formal studies what percentage this might be, or even if treating this problem led to recovery. There are lots of threads on this.

I think MTHFR issues are a risk and exacerbation factor, but not fully causal. As a result treating them is not very likely to result in cure, but it might if someone is close to recovering anyway. Yet we don't know as proper large formal studies are only now being considered or underway. All this is still very new. A decade ago I was debating this possibility online, but nobody knew very much.

Yet knowing there is a problem might assist with medical advice ... if the doctor has a clue about these issues.

Thanks for the info.

Best,
Gary

 

[ukxmrv]

Lift,

Vote with your feet or refuse to pay the doctor unless you get what you want out of the appointment. Contact your local group or find a list online of "good" doctors in your area.

It may be pointless to see GP's unless they specialise in CFS. You are not alone. It's not just Australia that has this problem.