I am finally being tested this Friday ... My flare is on the taper and am wondering if this improvement will change the test results. I suppose I always have dysautonomia, it is just a matter of degree. He is having me taper some of my meds for the test.

I have small fiber neuropathy, dysautonomia and some AI disease (probably ankylosing spondylitis) for some members who do not know me.

Precisely which of the ANS tests are they going to do?

Sheltiemom

Hi Sheltiemom. How are you. It's Anita from SjS World. First post and just trying to navigate the hugeforum.

Do you have AN as well? What aspects?

I don't think it will effect your test results. It is good they are tapering meds, some meds really mess things up. I imagine you will have a tilt, a thermoregulatory sweat test, qsarts, valsalva and heart rate variability testing.

I haven't had any in years, but I KNOW my autonomic function has declined significantly.

Hope things go well for ya!!

Mere,

It all depends what things are "tapering" and what meds you will reduce as for what might be effected. By in large if the dysautonomia is there, it will show.

Cycleops,

It's Anita...I finally figured out how to navigate a bit. Drop me a message. I searched, but have no idea how to do so.

Thanks guys... The tests you mention sound about right. He explained that the tests will point to what part of the autonomic system is defunct. I don't seem to have fluctuations in my BP as in POTS, but I do have significant increases in my heart rate when standing. Along with the other lovely symptoms I have mentioned before. He may also do a test to check the fluid in my eyes as I have seem to have sicca syndrome, although, my sjogrens titers are negative.

He feels it is autoimmune, not sure what specifically, but autoimmune.

My bladder has also been acting up a bit more (retaining urine) and he has asked me to have a dynamic flow study as well. I feel fortunate to see him, Dr. Khurana, he is an 'expert' in autonomic neurology.

Are you continuing to feel better Cy?

Meredith

Hi, en bloc (Anita) - small world. How are you.

Yes, do have some ANS dysfunction; namely, overreaction to heat and underreaction to cold. Sweat production down somewhat in certain areas only. Symptoms have gotten better over time, but probably still photosensitive. When the sun returns in spring will have a better idea about this. Thankfully, the NLD SFN has improved greatly without Rx meds.

Sheltiemom

Mere, I am up to baseline....not swinging in the trees by any means, but I can eat a banana and use simple tools.

I can at least listen to Moodscapes music and not flip out. Nervous system is calming down a bit. I still feel like 14.1 trillion pins are sticking me...oh, wait, that is the budget deficit....well that too. I can't tell where I end and other things begin. Really, I will be fine.

Which brings to mind, how on earth does one ever explain this to others??? If one hasn't felt it, one can't understand it, no matter how good of analogies are drawn, right?

I would liken my last autonomic storm to sticking my head in a black hole, (I am nosey about string theory), and having my backside orbiting around at the speed of light. (And some er physician pulls out his algorithim and tells me that serotonin will fix this....oy vay....try to convince him you need dilaudid and a beta blocker. I tell them it's cheaper! I am one of the 'lucky few' who has too much serotonin, and I have many of these issues to begin with.) I did as Monty Python's characters in Holy Grail advised...'Run Away! Run Away!'

I do understand one of these times I will blow a gasket, and that will be that.

I don't have POTS. I have PLOPS (my term)....my heart rate goes up only to plop into the 40's along with my BP....unless I lie down to relieve my misery....at which time, all the fluid in my body decides to enter my head, grow my nose twice as big, at least on the inside, and makes my right eye play sibilant tunes....all in all, making my head too small to contain its contents, eventually forcing nerves to trigger esophageal spasms with concomittant vomitting (which by the way is an interesting experience, given the two should not occur at the same time in the physics of this universe). Oh, and everything constricts, trapping things in my head and holds like this for 36-48 hours, kinda like an affectionate boa constrictor on viagra hugged me and forgot to ingest me. He just kinda got stuck like that. Oh and my body that doesn't sweat, sweats 'generously'.


My entire family, all of my friends are on notice not to 'provoke' me in any way, and that won't take much, lest my next volley is in their direction. I won't warn my enemies.

If I seem a bit too amused by all this....my take on things is this: this is rare, there is no cure, and it is very misunderstood, so humor seems like the best perspective. It is not funny when it is happening, it is misery, and death seems a better option if one can't get dilaudid. I have cried 'Give me death or give me dilaudid' and I just get wierd looks.

It takes 3 days to recover from 2 days of misery, for a total loss of 5. I will be lucky not to have triggered another one due to lifting 10 shovel fulls of snow, to get my pregnant daughter's car unstuck in my driveway yesterday. Between me and my offspring, I figured, they are worth preserving.

Isn't the nervous system a wonder?? Ugh. Why can't I have an ulcer?

En bloc, enable your private messaging to get a private message box on here. You can't be pm'd right now.

Oh Cy, you are just what the doctor ordered... laughter!!

I can identify with what you are saying. So many strange and scary feelings and sensations. I used to be a bit more dramatic in my presentation: gasping for air, tachycardia, swooning and shaking. Now, I can pretty much hide these things (experience and practice). The only overt symptoms I have that might clue one in to my flare is that my face, neck and now (new thing) my left arm turn a blotchy red/purple. And I get that angry eye thing (remember the Fleetwood Mac song). . I have learned to lean onto something so that I don't tip over.

Such a lovely thing. I also have GI problems (gastroparesis and constipation or diarrhea).

Well, maybe I will try the "give me dilaudid or give me death" thing...

Mere

Sorry, I am geasing. It is a Kenny Loggins song (Angry eyes).