my weee test, pots/oi

[heapsreal]

Where have you been referred to Heaps? One daughter had a tilt table test in the Neuroscience department at the Royal Brisbane hospital and another daughter had one in the paediatric cardiac unit of the Mater. Both were covered by Medicare.

my referral is for wesley hospital, i have a feeling its not going to be cheap.
.
sushi, i think i will wait until get get blood work back.
my recent sinus issue was from a flu/virus infection that turned into a chest infection. Hoping its not the same type of germ that has been causing my ongoing sinus issues as i did have it sorted with the BEG abx spray. If it hangs around too long i will use the beg spray again.

I was hoping my doc would just prescribe the desmopressin to reduce urine output but have to wait for test results to come back. It was a very rushed appointment, so didnt get a real good chance to talk things over with my doc.

 

[Sea]

my referral is for wesley hospital, i have a feeling its not going to be cheap.

Any reason you have to go with that one? Does your doc think they do more or better testing than the others? Or is the wait shorter?
Am interested because my doc is keen for me to have one at some point too.

 

[heapsreal]

Any reason you have to go with that one? Does your doc think they do more or better testing than the others? Or is the wait shorter?
Am interested because my doc is keen for me to have one at some point too.

talk on chat?

 

[heapsreal]

I didnt really get a reason why to get the TTT done at wesley, i assume its because thats where he sends his cfs patients and maybe they have a good understanding of it but i dont really know. I did ask him about other places where i could possibly get it bulk billed but he said there werent any. maybe i dont fit the exact criteria to get it bulk billed??

 

[Sea]

I didnt really get a reason why to get the TTT done at wesley, i assume its because thats where he sends his cfs patients and maybe they have a good understanding of it but i dont really know. I did ask him about other places where i could possibly get it bulk billed but he said there werent any. maybe i dont fit the exact criteria to get it bulk billed??

Hmm, I don't know what the criteria would be. My eldest was referred for the tilt table test when I took the info from a magazine article about Greg Page (the yellow Wiggle) to the Neurologist and told her that my daughter's symptoms were very similar. At that point we had been searching for answers for her for a couple of years and the Neuro she was seeing at the Royal Brisbane was a specialist in epilepsy. Though my daughter did suffer occasional seizures epilepsy never really seemed to fit as a diagnosis.

Once the tilt table test showed radical abnormalities the epilepsy specialist had no idea what to do with her and it took another year to be seen by a Neuro familiar with orthostatic intolerance.

That was a few years ago now so things could have changed in the referral or criteria process.

 

[heapsreal]

Hmm, I don't know what the criteria would be. My eldest was referred for the tilt table test when I took the info from a magazine article about Greg Page (the yellow Wiggle) to the Neurologist and told her that my daughter's symptoms were very similar. At that point we had been searching for answers for her for a couple of years and the Neuro she was seeing at the Royal Brisbane was a specialist in epilepsy. Though my daughter did suffer occasional seizures epilepsy never really seemed to fit as a diagnosis.

Once the tilt table test showed radical abnormalities the epilepsy specialist had no idea what to do with her and it took another year to be seen by a Neuro familiar with orthostatic intolerance.

That was a few years ago now so things could have changed in the referral or criteria process.

your daughter have cfs/me or just orthostatic stuff?
so when the specialist had no idea, what types of treatments did they then try??

cheers!!!

 

[Sea]

your daughter have cfs/me or just orthostatic stuff?
so when the specialist had no idea, what types of treatments did they then try??

cheers!!!

At the time it was more orthostatic stuff, though now she'd qualify for the me/cfs diagnosis (and has the low NK cell count and activity to go with it)

The epilepsy specialist said she couldn't help us, but didn't refer her on either so it was back to the gp to find a neuro familiar with the OI. We ended up seeing another neuro in the same unit at Royal Brisbane who trialled a few medications to raise blood volume (Florinef and Cipramil) and Ivabradine to lower her heart rate.

Overall he didn't do much for her and we're still muddling along

 

[heapsreal]

At the time it was more orthostatic stuff, though now she'd qualify for the me/cfs diagnosis (and has the low NK cell count and activity to go with it)

The epilepsy specialist said she couldn't help us, but didn't refer her on either so it was back to the gp to find a neuro familiar with the OI. We ended up seeing another neuro in the same unit at Royal Brisbane who trialled a few medications to raise blood volume (Florinef and Cipramil) and Ivabradine to lower her heart rate.

Overall he didn't do much for her and we're still muddling along

Thats no good. I thought that might be the case. One wonders if its worth even spending the money on a TTT if they cant treat it. For me my issues more hypertensive episodes which i think is related to diabetes insipidus like illness.
What do u do when the guy who writes the prescriptions doent know as much the patient.

The yellow wiggle though sounds like he still has to pace himself etc although his condition has improved. Cant seem to find if he has cfs/me or just orthostatic issues??

cheers!!

 

[EtherSpin]

don't take piracetam or similar on day of test or day prior! I took a bundle before my OI test and got through fine where I would normally fall over and got home to find piracetam can be a partial treatment!

 

[heapsreal]

Im still not 100% sure my bp is a pots/oi thing. I still pee like a race horse but im quite good at keeping fluids up so i think thats a different issue. My bp does seem to be related to sinus issues or maybe some other bacterial infection???

I had a recent flu with chest infection and sinus infection and bp went up but have been on abx for this for a short while and now my bp and resting pulse rate are back to normal?? I think prior to this recent infection it was lingering around before it burst onto the scene, if u get my drift.

Also not neccessarily sinusitis symptoms but i just feel better on abx, i just wonder if there some underlying bacterial infection going on. I have tested neg to all the common bacterial infections implicated in cfs?? I havent had a lyme test as its dam expensive to send blood overseas from here and not sure if testing here is reliable enough yet??

SOme of the tests i have had recently for diabetes insipidus like urine osmolarity etc as well as hormones etc i will get results at the end of november.

cheers!!

 

[xks201]

Ether...piracetam reduces choline levels. Choline excess is one t heory in regards to all this.

 

[EtherSpin]

piracetam supposedly helps the brain utilise choline faster (so you are right,it does in a sense reduce choline) - I didn't realise choline was implicated in POTS.
just got diagnosed with POTS BTW. (on thursday)

 

[xks201]

IMO the reason doctors can't solve a lot of CFS cases is because they do not have appropriate tests to measure selective partial ADH deficiency. That and the pills and nasal spray do not work well in my experience. No one would tell you this though because few people have pan hypo pituitarism like myself.

If you are peeing more than you are drinking you have selective ADH deficiency or resistance or something IMO.

If you can't take in water and retain it then you are going to walk around with low blood volume and basically low everything including hormones and electrolytes. Even the best endos have no clue about this in my experience. The water deprivation test is a flawed test that can only measure nephrogenic diabetes insipidus. What we are dealing with here I don't think is nephrogenic but central. And it is partial so testing just once may not prove with proper results.

It's somewhat complex, and even more complex to someone who has spent 200 thousand dollars on their education and poured that amount of trust into a medical system which knows no better and is still really in the dark ages of science.