[Healthgirl]

If all they are going to do is give meds to cover up what is going on, what is the point? I am so frustrated with all of the "I don't knows" from the neurologist. I have this test scheduled for mid February. They already know I have nerve damage and orthostatic hypotension. They can only offer pain relief. With my ANA at 1:640/ speckled and positive small nerve fiber and orthostatic hypotension. The rest of my labs are normal. What would the benefit be for me to get this test. The problems are obvious, dysregulated body temp, heart palps, yawning episodes, dizziness, disorientation, sensory problems...... They will find the issues, but is there any way this test can help with determining cause?

[baba222]

Originally Posted by Healthgirl

If all they are going to do is give meds to cover up what is going on, what is the point? I am so frustrated with all of the "I don't knows" from the neurologist. I have this test scheduled for mid February. They already know I have nerve damage and orthostatic hypotension. They can only offer pain relief. With my ANA at 1:640/ speckled and positive small nerve fiber and orthostatic hypotension. The rest of my labs are normal. What would the benefit be for me to get this test. The problems are obvious, dysregulated body temp, heart palps, yawning episodes, dizziness, disorientation, sensory problems...... They will find the issues, but is there any way this test can help with determining cause?

Not sure about root cause, as you say. It might give you an idea of possible progression and if you are a planner, that will help you.

Good luck with the test, as most are very challenging.

[en bloc]

It all depends on what you are looking for. If you want to be treated for these deficits, then the testing will be helpful. The meds don't just 'cover up' symptoms...they can help to manage BP so you can function better and have more quality of life.

Of course finding the root cause would be best, but not always possible. So you do what you can to isolate specific problems (like orthostatic hypotension) and treat those.

Of course the other benefit would be to open doors for other treatment options...like IVIG. Documentation MUST be done in order for insurance to pay for these high dollar treatments.

I would be completely bed-bound without meds for my orthostatic hypotension, so I did testing many years ago so I can be properly treated. There is no cure for most autonomic dysfunction, so you treat as best you can. But again, it all depends on what you want out of this and your level of function.

The autonomic testing itself will NOT tell you the cause of the dysfunction. But it will (along with your ANA level and pattern & SFN Dx) help to document everything for treatment options.

[cyclelops]

I agree with En Bloc.

I have been living with this disease for a long time. I tend toward not intervening all the time for symptoms. They do run their course to some extent. Mine wax and wane.

I do best when on the least amount of drugs. Polypharmacy is an issue with this disease so I had genetic testing done to see what drugs my body doesn't metabolize well and it turned out, it was most of them, so, fortunately, I didn't take stuff that would have been very toxic. A lot of rheumatological drugs are very toxic such as methotrexate, so be careful with rheumatologists. Every doc I see wants to fix something with a pill but for me many of those pills make some other issue a lot worse.

[cyclelops]

Just a word to the wary....be very careful getting into regular narcotic and benzo use. You get into tolerance and interdose withdrawal which really messes with your autonomic systems and takes months to recover from when you don't use them any more. For me, SSRIs also messed me up and caused autonomic crisis.

Also insomnia may be a huge issue. It isn't often mentioned in article on AAN/AAG but I see it mentioned in forums. Mine is terrible and it's frustrating when you lay around all day because you can't do much and then you are up all night.