BaPon

Phosphorus is not typically on a metabolic panel. It has been run by my nephrologist (I have chronic kidney disease) in the past). The critical low (1.0mg/dl) was found when I was in the ER as part of the cardiac work up. They often draw a magnesium level (along with troponin levels, d-dimer, etc) and the ER doctor ran the phosphorus along with those. Now that I am stabilized and home they are having me do a 24 hour urine collection to get more accurate measurement.

Has anyone had low phosphorus along with low Vitamin D? I’m still waiting on Vit D test results. But I was hospitalized for hypophosphatemia (1.0mg/dl). Just wondering if anyone else with low Vitamin D has had issues with phosphorus levels.

If I were in your position I would find a recently published research study on a topic that is in the field of research like this one: Treatment of long COVID complicated by postural orthostatic tachycardia syndrome—Case series research https://onlinelibrary.wiley.com/doi/full/10.1002/jgf2.670 I would email the corresponding author using the email address listed on the published study. (tsuchidatomoya@gmail.com) and ask if he or she has any colleagues in the area where your daughter is living. Researchers are often very willing to help and have connections with other organizations. The worst they can say is no. Worth a shot.

I can tell you that my PT (who is amazing and has years of experience with patients with FND) is a firm believer that dysautonomia is a driver for FND. If you can’t get the dysautonomia under control you will only be managing symptoms of the FND. You will not be able to treat it. That has absolutely been the case for me.

They diagnosed non epileptic seizures over a 6 day hospital stay in Sept of 2020. Video EEG was used along with ruling out other possible causes. I also have functional dystonia (and organic dystonia) and what neurology thinks is functional foreign accent syndrome. I did a 9 month intensive out patient program for the seizures and I now (finally) have specialized PT for functional Dystonia. Improving now that PoTS is diagnosed and under better control. I also had bilateral spastic entropion (lower lids flip under) and bletherospasms. I had bletheroplasty for the entropion. Other areas of the body are impacted as well (GI and GU).

Sorry. I didn’t answer your entire question. As for symptoms it’s hard to say what was from the PoTS and what was from the low phosphorus. But the severe muscle spasms and what felt like bone pain are gone and I’m not having the severe chest pain and heart racing/pounding. In the hospital my heart rhythm was all over the place. My phosphorus was quite low at 1.0mg/dl.

Yes. We are trying to figure it out. Lots of follow up appointments now that doctors are paying attention to what I have been saying for over a year and a half about my tachycardia and shortness of breath and dizziness. Perhaps postural hyperventilation like the authors of the article I posted or maybe low Vit D. The former would make sense as I’m constantly air hungry and had a low C02 (respiratory alkalosis). The latter could make sense if I’m not absorbing phosphorus due to Vit D deficiency. Perhaps both.

I found this article helpful. I’m newly diagnosed so maybe old info for those more experienced. But can’t hurt to share. My cognitive testing is so impaired they are ruling out Frontal Temporal Lobe Dementia. But it appears to be related to the dysautonomia. Cerebral Blood Flow and Cognitive Performance in Postural Tachycardia Syndrome: Insights from Sustained Cognitive Stress Test Originally published5 Dec 2020https://doi.org/10.1161/JAHA.120.017861Journal of the American Heart Association. 2020;9:e017861

Hi. Have you asked them to check your phosphorus levels? I was recently hospitalized with critical low phosphorus. D-dimer was also elevated. But D-dimer is a very nonspecific indicator. It is good when it’s normal. But not very helpful when elevated. Here is an article to I found helpful: J Am Heart Assoc. 2018 Jul 3; 7(13): e008854. Published online 2018 Jun 30. doi: 10.1161/JAHA.118.008854

Not arguing with your perspective but wanted to share mine. I didn’t want to go to ER last week. But if I hadn’t I might not be here. I ended up is critical low phosphorus. We don’t know why yet (perhaps Vit D levels, perhaps low C02) but be careful of avoiding ER and assuming everything is okay. This article is helping with the differential diagnosis for my type of PoTS and the low C02 and Low phosphorus. J Am Heart Assoc. 2018 Jul 3; 7(13): e008854. Published online 2018 Jun 30. doi: 10.1161/JAHA.118.008854 Again, not trying to start any argument. Just be careful. My husband finally insisted I go in to ER. It took 3 days to get me stabilized.

Yes. I have both. My experience has been that until you get the Dysautonomia under control it will be very difficult to improve the FND. I would suggest that you find a team that understands both. This is VERY challenging! There are physical therapists who specialize in FND movement disorders who also understand PoTS. I hope this helps. Stay strong. It is a long and arduous journey.