Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

[Gingergrrl]

@Gingergrrl, I'm fine with that.

Great, and will send you a PM tomorrow!

 

[Pyr2]

The autonomic neurologist not that much help! Par for the course..... Back to the land of the no answer! Good luck to all.

 

[Gingergrrl]

The autonomic neurologist not that much help! Par for the course..... Back to the land of the no answer! Good luck to all.

@Pyr2 Am sorry to hear that. What did he say or recommend? Am with you right now in the "Land of no answers" but am still trying to make my escape plan.... It is hard though the level of non-stop research and advocacy. Good luck to you as well.

 

[Pyr2]

@Gingergrrl - Hello!
First of all, I should update this thread if I havent' already that my tilt test was actually NEGATIVE so I don't know what to believe now. He actually said, "well sometimes you have POTS and sometimes you don't." What does THAT mean!!!!!!!!

Ugh, anyway....
Funny, he mentioned CFS/ME as his first thought as to what was wrong!

Which was on the bottom of my list because throughout this 3 yr nightmare, fatigue was never really one of my symptoms up until recently. I have since come to see on this board that a lot of members do not really have fatigue and have what I have which is the never ending barrage of neuro symptoms and autonomic symptoms. I know ME is a neuro disease but I am still caught up in "I have something else let me visit 20 neurologists" phase, which I need to let go of at some point. He did not think I had MSA either which is reassuring. I understand the nonstop research, I hear you. I have concluded that its definitely some type of mitochondrial issue, but whether its CFS/ME or some other "developing" neuro disease yearsssss from now, I feel like I will never be reassured fully until the darn symptoms go away but I just dont see that happening, although in my situation b/c of the "no fatigue" I never really tried resting...... until now. I am finally tired and see the muscle atrophy and feel the weakness -

 

[Gingergrrl]

@Gingergrrl - Hello! First of all, I should update this thread if I havent' already that my tilt test was actually NEGATIVE so I don't know what to believe now. He actually said, "well sometimes you have POTS and sometimes you don't." What does THAT mean!!!!!!!!

I find it hard to believe that "sometimes you have POTS and sometimes you don't." Although in my case, I take a beta blocker for the POTS and if I had taken it on the day of the test, it would have controlled my tachycardia and it would not have shown up. But b/c I skipped one dose of Atenolol (had taken it the night before but skipped the morning dose for the test), my HR jumped about 46-48 bpm as soon as they raised the TTT to a 60 degree angle. Did you take any meds on day of test? It also jumped for the breathing and hand grip portion (and maybe other times, too, am not sure b/c still have not seen the actual results.)

Normally my BP is very low (80's/50's or with Midodrine 90's/60's) but in the test it stayed over 100 systolic the entire time and even hit 110. So the doc thought I do not really have hypotension but I suspect that the Atenolol lowers my BP and b/c I was not on it, my BP stayed higher in the test. In addition, I have MCAS and had to fast for the day of the test and did not eat any food until about 5 PM when it was all over. Any time I fast, my BP also raises b/c food and histamine lower my BP. So there are many factors that complicate things.

Ugh, anyway.... Funny, he mentioned CFS/ME as his first thought as to what was wrong!

Have you had any antibody panels like the one I had from Mayo Clinic? Am now confused which thread I am in (in case this is not the thread where we were discussing this!) I did not go to Mayo and the doc ordered the tests which were sent there. It provided some new info that is really crucial to my case and I feel I need to sort it all out before I would accept the ME/CFS is my diagnosis. This doc actually did not think ME/CFS was my diagnosis but another doc did so it's very confusing.

Which was on the bottom of my list because throughout this 3 yr nightmare, fatigue was never really one of my symptoms up until recently. I have since come to see on this board that a lot of members do not really have fatigue and have what I have which is the never ending barrage of neuro symptoms and autonomic symptoms. I know ME is a neuro disease but I am still caught up in "I have something else let me visit 20 neurologists" phase, which I need to let go of at some point. He did not think I had MSA either which is reassuring. I understand the nonstop research, I hear you. I have concluded that its definitely some type of mitochondrial issue, but whether its CFS/ME or some other "developing" neuro disease yearsssss from now, I feel like I will never be reassured fully until the darn symptoms go away but I just dont see that happening, although in my situation b/c of the "no fatigue" I never really tried resting...... until now. I am finally tired and see the muscle atrophy and feel the weakness -

Fatigue has never been one of my symptoms either- not physical or mental fatigue. My symptoms are all autonomic, pulmonary/breathing, neurological, and as of last year MCAS. I never feel the need to rest either but I cannot breathe standing up and require a wheelchair b/c of this. So by default I am "resting" in that I am always seated, yet I never feel fatigue as I would expect to if ME/CFS was my diagnosis and I never feel feverish/fluish or have brain fog, pain, PEM, etc. I have failed every pulmonary test in the book which is why I am not stopping my search either. We know our own bodies and it is important to trust your instinct. (Of course I have no idea what you have and am not saying you do or do not have ME/CFS, just keep searching until you are satisfied.)

 

[Pyr2]

No, I did not take any meds on the day of the test, but I kept bracing my legs, so maybe that was it.

Yeah, I forget which thread I was in too, sorry, bc of the many theories I have about my illness this is not the only disease blog I belong to and I only visit it now and then. So I apologize if I don't recall your full history. I do remember the autonomic issues. I am sorry about the wheelchair. It must be very frustrating-- how old are you? Do you have kids? I am 47 and have 3, 2 of whom are super young and a husband who now thinks Im crazy about 50 doctors appointments.

I do know for sure whatever I have is immune based. Whether that stands alone or has caused another disease is yet to be known. I am sure b/c I had a horrible case of mono as a teen and have never truly been right since. Plus I come at this predisposed- born with symptomatic mitral valve prolopase that needed open heart surgery so my autonomic system has always "run" differently.

My concern is that mine actually began with true seizures (documented) and yet I dont have epilepsy so I fear that there is some horrible neurodegenerative thing going on, even though I read you can have seizures with autonomic dysfunction and or CFS/ME. However, as to your comment about "the search" it will be winding down this spring/summer. I have two more specialists that are lined up and then I just have to make peace with the whole thing unless somehow I can make it to Mayo, etc. Although there isn't any test that they can do that I haven't done locally. If I could just pay for an hour for a rheumy, immunologist, and neuro to sit in a room for an hour together we could have this solved lickedy split!

Oh, and another comment the autonomic neuro said was well, you sense all this burning and pain, and Im sure its there, but your nerves are all still working, meaning I can still walk, use full power, etc. Sensory problems get no respect, I tell you!!! lol I wish my SFN biopsy would have been positive, that would have set me at ease more. But Im so scared this some "central" pain syndrome.

Enough from me. I hope you find your answers Ging!

 

[Gingergrrl]

No, I did not take any meds on the day of the test, but I kept bracing my legs, so maybe that was it.

@Pyr2 Was just curious if your results could have been affected my meds but it doesn't sound like it. Am not sure what bracing your legs would do? Were you strapped to the TTT before they propped you up?

Yeah, I forget which thread I was in too, sorry, bc of the many theories I have about my illness this is not the only disease blog I belong to and I only visit it now and then. So I apologize if I don't recall your full history. I do remember the autonomic issues. I am sorry about the wheelchair. It must be very frustrating-- how old are you? Do you have kids? I am 47 and have 3, 2 of whom are super young and a husband who now thinks Im crazy about 50 doctors appointments.

No worries and I don't expect anyone to remember my history! I was just confused when I mentioned the antibodies that I might not even be posting in the thread that I thought I was and that you might not know what I was talking about! I was curious if your autonomic doc has run a panel on you from Mayo that checks auto-antibodies? Yes the wheelchair is very frustrating b/c someone has to push it, even inside the apt, and I hope to someday get a motorized one but this is a longer term project that I cannot work on at this time. I am 45 and have a step-daughter (who I have raised as my daughter for the last four years.) My husband, thank God, is very supportive and knows how ill I am even though there are many aspects of the illness that we have yet to sort out, especially re: these antibodies.

I do know for sure whatever I have is immune based. Whether that stands alone or has caused another disease is yet to be known. I am sure b/c I had a horrible case of mono as a teen and have never truly been right since. Plus I come at this predisposed- born with symptomatic mitral valve prolopase that needed open heart surgery so my autonomic system has always "run" differently.

I had a horrible case of mono at age 42 and somehow escaped it as a teen when it was more common. Wow, am sorry about the MVP and needing open heart surgery. Did the POTS begin after the surgery or before? I had a minor surgery in which I did not recover properly and had a high fever and was diagnosed with mono about one week later.

My concern is that mine actually began with true seizures (documented) and yet I dont have epilepsy so I fear that there is some horrible neurodegenerative thing going on, even though I read you can have seizures with autonomic dysfunction and or CFS/ME. However, as to your comment about "the search" it will be winding down this spring/summer. I have two more specialists that are lined up and then I just have to make peace with the whole thing unless somehow I can make it to Mayo, etc. Although there isn't any test that they can do that I haven't done locally. If I could just pay for an hour for a rheumy, immunologist, and neuro to sit in a room for an hour together we could have this solved lickedy split!

I have never had a seizure and we differ in this aspect. My #1 problem is shortness of breath and lung weakness. Good luck with your upcoming appts. I have some, too, and hoping they can provide me some answers. Do you think you will go to Mayo?

Oh, and another comment the autonomic neuro said was well, you sense all this burning and pain, and Im sure its there, but your nerves are all still working, meaning I can still walk, use full power, etc. Sensory problems get no respect, I tell you!!! lol I wish my SFN biopsy would have been positive, that would have set me at ease more. But Im so scared this some "central" pain syndrome.

Is pain your main symptom now vs. autonomic stuff?

Enough from me. I hope you find your answers Ging!

Am happy to listen although not sure if anything I have said is helpful! I hope you find answers as well.