What Should Prompt Neuro Retesting?

[icthus]

In my very limited knowledge of dysautonomia and POTS, and like Ami (Willows), I don't see any reason to retest what we already know. I, too, am being asked to do the two sweat tests (QSAT and TST) and cardio tests (Valsalva and tilt) because of recent deteriorations. However, I don't want to do them because of the after-effects.

Are these tests so precise that they can fine-tune treatment because it took 16 minutes to blackout instead of the former 27 minutes? Anyone have any advice? When are the follow-up tests beneficial to the patient? Please, if anyone can add insight, those of us in line for retesting need your voice.

And Ami - thanks for your post. I've been wanting to ask this for a long time. Your response about the genes was brilliant and irrefutable. Great job!! To add to this topic of retesting, don't we all have variable test results - we're highly reactive for a period and then not so much. If this is true, then doing multiple testings to see progressive deterioration would not be conclusive IF they ended up testing on a "good" day - and these test dates are made weeks in advance so you cannot anticipate what your dysautonomic function level will be on the day of the test. Anyway, I think "benchmark" or "trying to find a pattern" reason for testing is invalid. These tests are too costly to us as patients, and parenthetically, to our insurance, for those of us who are covered.

[Ernie]

Hi,

I had 8 TTTs and I did not get more info than I had after I did the ones at NIH. I did more than 12 postural catecholamine tests as a lab rat and those helped me. It also helps when they test my family members who have the disorder. This is where the fine tuning happens. But it's not the researcher who prescribes the med. It is my other doctors who find the medication.

[willows]

Hello icthus,

Thanks for the post about retesting , it really does make me cross because as you clearly say , some days we can look and almost feel 'human ' although these are getting rarer and rarer for me now , but other days I dont know about you but I'm lucky if I can get out of bed , walk or hold a 'normal conversation ' with the family .

And to crown it all now I'm having to be tested for my hearing as both my men here keep telling me I'm shouting at them all the while now ooooooooooops how strange as it sounds the right level to me ?????

But as for all this testing after going to a new consultant , its just plain lunacy , by the time I actually get to my consultant at Torbay from the borders of Devon and Cornwall I've been travelling around an hour or more so I'm feeling car sick, head-achy and just plain 'yucky' then trying to hold a what I'd call normal conversation with anyone after this , well its just crazy .

Tell me , when you go to see a new consultant does he 'she actually believe you ????

What I mean to say is , that even thought you have letters and print outs from other consultants and may possibly have had POTS for some years ( as tested by a TTT which came up positive 1st time ) does your new consultant actually listen to you or like mine ....................( sounds of me trying not to beat my head against a brick wall ) try and make out that what you are saying isn't correct ............very unlikely because its so rare and of course the old one ...............I'm the doctor here and I'll tell you if you have a condition or not , not the other way around ..thank you

I sometimes think that because of who I am I'm looked on differently ( for those of you who know what I;m talking about )

I've never pushed this ' upper class thing' at doctors in fact I've done the opposite and always tell people to call me just Ami and nothing else, but its as if this new consultant is out to prove that I dont have POTS ................er, whats wrong with all these new doctors who are churned out of med school have thy no ability to read other more senior consultation notes/letters/findings and reports .

I dont know about you icthus, but I find this whole re-testing thing a load of old rubbish , do cancer patients get re-tested just in case its disappeared over night ???????? Do patients with kidney failure get re-tested ???? Its almost like asking my husband to come into a hospital to have his arm checked just in case his hand had grown back on and yes ................he did have to go in to a UK hospital to see a consultant to have his arm measured to make sure that it hadn't grown back !!!! and NO I'm not kidding ( all to do with an insurance pay out at the time )

So if this is the mentality of the UK medical profession ................OMG....................what hope have my son and I got at really getting help with new medications etc............we might as well go on seeing our local Gp's and check out all the drugs/equipment etc that is used by you all on this site ...................which by the way is what I have been doing since I joined the POTS PLACE way back , and I tell you what, I've had more help from all you wonderful people on here than all the doctors/consultants/specialists I've ever seen in 40 years..............so coming on here and speaking to all you really does help and POTS PLACE does work .

Ami .................willows XXXXXXX