HopeSprings

The only suspicion for me is the small fiber/autonomic neuropathy - Doctor said the only good explanation at my age is something autoimmune. Let us know how it goes. Hope this will make you much, much better!

Alex - I think I missed something. Did you test positive for auto-antibodies? Is this AAG? Best of luck with your treatment. I hope it works! Jpjd59 - Am I correct that IVIG was approved for your daughter on the suspicion of something autoimmune - without any positive bloodwork? How the heck are people getting IVIG? The last Dr. I saw said we would need to find evidence of autoimmune to get it.

Sounds like you're making progress. You may have said already, but did they do supine and standing blood work? If yes, what did they find? Curious which hormones the Dr. is talking about.

Yes, I'm very tachycardic standing in one place and then when I start moving it starts to come down. I think it does have to do with the leg muscles as Dave suggested - squatting instantly brings my heart rate down. So if we could be in constant motion or go through life in a squatting position or perhaps be rolled around on a gurney? all would be fine! Crazy illness...

Maia - yey for you on finally have proper documentation. The IV thing is annoying and I can't tell you how much misinformation I discovered while gathering my medical records. It's unbelievable and I think happens all the time. I just read a few posts back where AKgirl said having the surgery did not fix her POTS. Is your Doctor pretty sure the floating kidney and POTS are related? Well wait... you said lifting your kidney stopped the POTS symptoms, right? I do wonder why it didn't help her though and sounds like she had a terrible time with the surgery. I'm sure you would weigh everything carefully, but it is a bit concerning.

I continue to be astounded and amazed by your story. And I love that you're pro-active because Doctors usually aren't! Is there help available once the Doctor sees this documented on the scans?

Ugh, it's so frustrating when we get more clues, but they only lead to more questions and not definitive answers! We just need things to make sense. Hopefully the CT will be normal. And I hope the Dr. will have some insight for you. Let us know what he comes up with.

My thought when the possible LEMS diagnosis was on the table was this could be the reason for the SFN (autonomic neuropathy=POTS symptoms), but I don't think they have found MG to be associated with SFN. However, as was suggested above maybe any autoimmune condition can affect small nerve fibers and they just haven't made that connection yet. What does Dr. Chemali say?

I was curious what would happen on follow up. I thought there was some question over whether it might be LEMS or MG? Can the antibodies you tested positive for signify anything other that MG? Do you have MG symptoms? Were the antibody levels high enough to be considered very significant? What does the Dr. say?

Hope you're on your way to answers and some help! Sounds like you've found a big piece of the puzzle. Keep us posted.

Yup, I asked my POTS/neuropathy neurologist about this and he thinks it's a very promising area of research and may eventually help some of us.

Ok, wasn't sure where you were at with this. Will look for future updates!

Any updates Maia? Hope you're getting some answers.

How timely - just watched this new video by Dysautonomia International: http://www.youtube.com/watch?v=Z-MQONfOE8Q

Since this post has been bumped up and I am still putting puzzle pieces together..... just wanted to post an FYI. I have now had THREE skin biopsies, the first showing neuropathy, the second two not showing it. So I asked for the QSART (which I thought I had before but turns out if was a different test) - just had it done and it was very positive. SO I think if you're looking for neuropathy and one test shows negative, get the other test done just to make sure.

Well that's good to hear MomtoG - hope they're benign and stay that way!

Much to my surprise I also have multiple nodules equaling a goiter. All thyroid testing has always been normal. I just had a third ultrasound last week because we're watching these nodules over time. One of them grew larger between the first to second ultrasound, so we'll see what this latest one shows. I worry about thyroid cancer - I really don't need anymore problems.

Following with interest. Thanks for the updates. I was reading a little more about this and pain seems to be a major symptom as well. Do you have pain when upright? I have a lot of pressure, but not pain.

Yes, it's a big problem for me too.

Also meant to say my BP is usually low, not high.

Maia - do you have Postural Hypertension? I do remember reading about that in articles about Nutcracker Syndrome and in Sue's article above. It was the one thing that did not fit for me, but I don't know if it's a requirement. Do you have this?

Not sure if laying and standing catecholamines would be relevant here? Or urine testing for blood? I've had blood in my urine for years with no explanation. I did have an abdominal? CT scan which showed some narrowing of the renal vein and a laying, sitting and standing renal ultrasound which showed the vein gets compressed when sitting and standing. Not sure if any of this relates to your situation, but figured I'd mention just in case. Keep us posted on you.

Sorry, I don't have insight into MCAD, but was wondering what testing came back pointing to Mito. I had some testing done for Mito and some stuff came back abnormal, but the Dr. who ordered the testing doesn't know about Mito so she interpreted it as normal. Would you mind sharing what specific testing you had done and what came back abnormal?

This is amazing. I'm trying to get a visual on this - so you were on the tilt table holding up your own kidney?? What do they suggest now? If you are in NY could you post the name of the Doctor you're dealing with or PM it to me. Maybe he could look at my renal ultrasound. Again, I hope this is your answer!

Oh wow! I pray this is it for you and it can be fixed! And it took YOUR persistence to get this answer. I'm stunned. Please let us know what happens. I am definitely going to follow up on this for myself as well.