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. 

Just now, BaPon said:

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). 

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. 

21 minutes ago, little_blue_jay said:

Were you ever diagnosed with FND? 

How are you doing now?  Do you still have the seizures?

 

 

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). 

30 minutes ago, little_blue_jay said:

What were your symptoms of low phosphorus?  Are they still trying to find the root cause?

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. 

On 11/17/2022 at 7:17 AM, TorturedSoul said:

@Sarah Teeyes! I've looked at his research and his research on hyperventilation as a cause of POTS symptoms intrigued me. I also didn't want to a standard tilt table test. At Brigham they also monitor cerebral blood flow in all positions and that's one of my biggest issues. I chronically feel like the blood flow to my brain is disrupted )chronic lightheadedness, brain fog, etc) It feels so severe yet I never faint. 

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

On 4/15/2021 at 1:22 PM, TorturedSoul said:

Hello, it's me again. Something is just confusing me and I wanted to see if anyone had any insight. I definitely have autonomic dysfunction and have probably had it all my life. I pretty much have symptoms every day.  However I've had 2 crashes that have lasted a year each. This past crash was horrible. Feeling of weakness in my limbs every time I ate, suffocating feeling at rest (that eventually was helped by salt water twice a day) extreme lightheadedness regardless of vitals (thank God for acetyl l carnitine and aloha lipoid acid) nausea, hyperventilation episodes, weakness...it felt like my whole system was just shutting down. My breathing was shallow. Limbs felt like jello. And nothing showed up at hospital (went 4 times). The only thing that showed up was an elevated d dimer. So they scanned me head to toe to see why. Of course the radiation worries me but I felt like I was dying. Anyway they never found a clot. They didn't scan me all in one day. This happened over the course of a few months Bc my symptoms were unrelenting. What I can't wrap my head around is why is my d-dimer coming back elevated?  It did when I had a crash a few years ago as well. I always have symptoms on a daily basis but during these crashes I would go back and forth to hospital with extreme symptoms. I don't know how I made it out of this last one. I thought it was the end. I don't know if anyone has any ideas as to why these levels are elevated during crash. In fact in the beginning of this one I had an ache behind my shoulder blade. Night sweats with a heart rate that wouldn't go down  short of breath. Drifting and waking up hyperventilating. D dimer elevated and yet CT scan was clear. What gives?

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:

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. 

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.