Do I Pursue Further Testing?

[pink1975]

When I first received a POTS diagnosis early this year I was relieved to have any explanation that made sense after suffering so many years without anyone to take me seriously. After researching POTS more I am finding that I have many symptoms that could be related conditions, namely hypermobility or Ehlers-Danlos as well as MCAS. I have been very flexible my whole life, and currently score at least a 4 possibly a 5 on the Beighton scale, with other minor criteria present. I also have odd episodes of flushing in my face and chest that are like fire, it is not all over but with very defined edges. My question is this: Do I pursue testing for either of these conditions? Will there be a different treatment required for either? I have three daughters, two who are at least a 4 on the beighton and one who scores at least a 6, possibly higher, based on my unmedical observations. They are all very healthy, with the only possible issue at this point being unexplained enlarged lymph nodes in the baby's neck and that they inherited my gluten intolerance. Is there any reason to be concerned about their health at this point if I don't follow up on testing? Are my issues possibly exclusive to POTS and I am being a worrywart?

[corina]

I think this is something that you need to talk over with your doctor. I do understand your worries and know how important it is not to scare your children. I have an 18 year old son who has been fainting over the years and is definitely more tired than his peers are. Otherwise he seems perfectly healthy so I keep an eye on him but don't want to scare him off.

I'm currently investigating EDS myself (with my doctor). I'm very aware that it most likely won't change anything to my meds regimen but at this stage in my life I'd like to know. I think it depends on what you would want with the information you would get. It might be important for your children to know what is going on (in case they would be in danger like possible luxations, or severe allergic reactions). If I were you I would talk to my doctor. Good luck on deciding if and how to proceed!

[arizona girl]

Hi P,

I always think it is best to follow your instincts. Often pots is secondary to other conditions. If you search the forum for eds and mast cell, you will see that those two are often found together along with pots.

There is a version of eds that should be ruled out, and there is a genetic test for it to do that, that is EDS vascular. It can cause rupture of the tissues like the blood/artery vessels and gi tract. I think it can be a factor with type 3, but not as often. Most just have the classical type which causes hypermobility and stretchy blood vessels that cause pooling, which then triggers a pots reaction after standing.

I know there was discussion about a good eds doctor somewhere on the midwest or the east coast several months ago. Not sure what part of the country you are in.

[Christy_D]

My son was diagnosed with POTS in 2009 and in 2012 I sought out testing for MCAS. The treatment for MCAS is different from POTS and some medications can make MCAS worse. I thought it best to find out for sure what we were dealing with and one of the medications the MCAS dr. prescribed has been extremely helpful. I figure, the more you know....the more you know.