Misleading TTT? Now positive ANA

[RecipeForDisaster]

I had my TTT yesterday and they actually did the very painful SFN biopsies (the lidocaine injections HURT and the rest is merely creepy and uncomfortable) DURING the first part of the test. I was very uncomfortable and afraid, and I am positive my BP was well above where it ever is at home. I haven't gotten any results yet but I believe "everything was normal".  I heard the BP monitor alarming here and there but I don't think it followed a helpful pattern. This is extremely disappointing!! I'm nervous enough during a TTT that I am nowhere near my baseline anyway, but I was very tachycardic from fear and pain.  I lost my vision when I was tilted, but it came back after a bit. The Doppler attached to my head squeezed hard enough, and cut into the bottom/back of my head, to ache badly as well... it was just like a vise grip. I so wish I could have this done when I am my regular self!! It was not a good day at all, but I'm very glad it's over.

 

One "diagnostic" thing was that I felt absolutely horrible off my meds, so I know they are helping.

 

I got home to some lab results that my ANA is now positive. It never was before. My white count is up too. I'm not worrying too much about it because I don't see my hematologist until 1/4, but I am a little intrigued that maybe we have found the problem. Any thoughts?

[Guest KiminOrlando]

Whatever autoimmune component you have, the more aggressively you treat it, the better your dysautonomia symptoms will probably be. That happened to me. An autoimmune flare triggers a POTS flare in me. There are still other POTS triggers and I still have it, but getting the rheumatoid arthritis and lupus under control helped.

Hope this helped a little. 

[RecipeForDisaster]

I am achy from a bad neck and back, but never complained about joint pain. I know whenever I have an infection (fairly often, respiratory or cellulitis after a tick bite) my dysautonomia symptoms are a lot worse.... I just never really thought about any autoimmune disease. A new chapter!

 

i can't even get my dysautonomia diagnosed... 

[Guest KiminOrlando]

I didn't either, until the lupus diagnosis. Before that, it was just 'anxiety'. Suddenly, I really was sick and they decided to take me seriously. Hopefully, this will happen to you too.

[p8d]

I'm sorry the TTT was so bad.  I absolutely dread ever having to go off meds and repeat it myself.

I was tested ~every 5 years for lupus for 30+ years and it wasn't until the third ANA in 18 months post POTS that a positive showed.  I too didn't think I had achy joints.  I hadn't put together that having to buy more comfortable shoes meant my joints hurt.  When the rheumatologist pressed on the joints in my hands and feet I swore rather forcefully from the pain.  Treating the autoimmune disease has helped a bit with the fatigue and more so with the joint pain but hasn't done much for the POTS symptoms that I recognize.

 

[bombsh3ll]

Well done for surviving your TTT! 

I think it's great that you got a cerebral doppler at the same time - whatever your BP and heart rate did during the test, the doppler can help you demonstrate objectively if you have low cerebral blood flow when upright. I can be sitting with a completely normal BP and heart rate and still be very lightheaded.

It sounds as if you are getting very thorough testing though and if you do have an autoimmune disease it does of course open up other avenues for treatment.

[RecipeForDisaster]

From the sound of the doppler (if that's meaningful) , and the doctor's seeming lack of interest, I don't think my Doppler indicated what I suspect. My BP being so much higher(I think) than usual, I think, made my perfusion much better than baseline. I often have a decent BP and HR and dimmed out vision and presyncope, so the Doppler is a really interesting test. I'd love to try it in a "normal" setting!

 

i suppose I could be used to joint pain and am just not noticing it. My neck MRI showed some pretty bad changes like discs being out and bone spurs, and I never complain about neck pain but it's there. I don't really want lupus, but I guess somethnig treatable would be good. Being taken seriously would be great, of course.

 

i still can't understand why an intelligent neurologist would think that cutting into my body during the TTT wouldn't skew the results. I guess maybe some people are totally chill about that, but I am not. It was hard to calm myself and I am NOT a nervous or fearful person when it comes to needles and stuff.

[Guest KiminOrlando]

51 minutes ago, RecipeForDisaster said:

My neck MRI showed some pretty bad changes like discs being out and bone spurs, and I never complain about neck pain but it's there. I don't really want lupus, but I guess somethnig treatable would be good. Being taken seriously would be great, of course.

Hmmm.... this wasn't an upright MRI with flexion, was it? Neck issues make me question craniocervical instability and Ehler's Danlos Syndrome can trigger a positive ANA along with dysautonomia. 

Just a thought. I'm not a doctor, just going through exactly that. Not sure if I have EDS or not, but they want to fuse vertibrae because of the craniocervical instability. Not sure that I am going to let them since they haven't been able to articulate what I would gain from the surgery. Recovery is a year and it might not really help all that much.

[RecipeForDisaster]

When I turn or raise or lower my head much, I lose my vision and get dizzy. During the TTT, the doctor had me try that, but my BP was higher than usual and I had a hard time moving with the Doppler strapped on my head. He said the Doppler was normal for that, ugh.

I didn't have an upright MRI because the doctor said it had to be a standard one first for a baseline, and that I have to go to Albany for an upright one (I would go).

i never really thought I had EDS but who knows... something has to be behind the ANA, maybe Sjogrens although I don't think my eyes are dry. My throat is! I don't think I'm that flexible. My sister had huge cervical fusion because of numbness, weakness, and potential loss of function. I think we have the same neck  hers is just 12 years older. She did get a lot better from it but I am not sure I would go through that. She is a surgeon and apparently if she kept working with her neck un fused she would start to get paralyzed.

[p8d]

I don't have lupus but undifferentiated convective tissue disease which I understand is when the ANA is positive but not specific enough to identify a particular condition.

 

I too, have neck issues.  Not too bad, just a bulging disc at C3-C4 or 5.  Brain fog this morning.

[Guest KiminOrlando]

6 hours ago, RecipeForDisaster said:

My sister had huge cervical fusion because of numbness, weakness, and potential loss of function. I think we have the same neck  hers is just 12 years older. She did get a lot better from it but I am not sure I would go through that. She is a surgeon and apparently if she kept working with her neck un fused she would start to get paralyzed.

Mention this to the doctor when you talk to them about your neck. It could be nothing but coincidence, but it could have been mild EDS for her too as it tends to run in families.

 

1 hour ago, p8d said:

I don't have lupus but undifferentiated convective tissue disease which I understand is when the ANA is positive but not specific enough to identify a particular condition.

 

I too, have neck issues.  Not too bad, just a bulging disc at C3-C4 or 5.  Brain fog this morning.

I started out with Undifferentiated Connective Tissue Disease. Then I went to lupus, added RA, now they think Sjogren's too. I'm having a lip biopsy after Christmas. The jury is still out if the craniocervical instability, hypermobility, adrenal problems et al are truly EDS. It seems impossible that they could really add more. I hope you have better luck than I did. I hope they still treat the UCTD because it will do damage to your joints and organs even though it doesn't sound dangerous. 

[RecipeForDisaster]

I know, there are only a few kinds of specialists I DON'T see as it is!! I will definitely mention my sister, and I will also let my geneticist know about all of this (she didn't know but what to test me for). I think my grandmother has RA. I wonder if I'm going to get 4 diagnoses or just one big one that explains everything.... I HATE not having a label!! I tested negative for adrenal problems, but my ACTH stim was at 4pm and my cortisol soared, so I'm not really sure about that. It sure seems like my endocrine system is off even though i was cleared. My renin is high.

 

The potential damage to joins and organs is super scary. I hope someone starts to help me!! The doctor who ordered the tests hasn't called and I don't see him until 1/4. He doesn't like to talk about lab work on the phone.