Pots Testing Of Monoamniotic Twins

[Thomas]

We have identical twin girls who were/are monoamniotic twins which are somewhat rare (~1% of twin births). One of the girls has POTS while the other does not. This seems like a unique opportunity for comparative testing (genetics?).

I'm curious if there are benefits (such as finding a cure) of studies/testing consisting of twins and if anyone has heard of POTS testing consisting of monoamniotic twins and/or twins in general.

Thank you!

Thomas

[issie]

The only genetic testing with dysautonomia amongst families that I know of is with Jewish families that have Familial Dysautonomia. It's different then POTS. I haven't heard of a study per se ---but, my doctor said that if there was one - he'd like my family included cause me and my sis. and her kids have some sort of dysautonomia. My sis has OI and I have HyperPOTS. I'm not of Jewish decent - so there must be some connection with genetics in other family lineages too.

Issie

[puppylove]

I have a twin sister- she doesn't have POTS and I do. But we are not identical. What is monoamniotic?

[icesktr189]

My daughter actually went to a geneticist a couple months ago and she said there is research being done that shows POTS on a certain gene.. wish I remeber what it was called.

[anna]

This would be a good opportunity for some Dr. to take them on board and see if anything crops up. I personally would be looking at a few conditions like;

1) nutcracker syndrome http://www.phlebolym...acker-syndrome/

2) Dopamine beta-hydroxylase (DBH) deficiency http://www.ncbi.nlm..../books/NBK1474/

3) human norepinephrine transporter gene, http://en.wikipedia....ine_transporter

You also might want to contact a few of the Dr.'s researching ANS dysfunction around the world as your daughters situation my be of great help to them.

My twin boys now definitely look non- identical but very oddly had one shared placenta which we can only assume must have fused but the Dr.'s were all confused as they seemed to have one amnionic sack, on their medical birth record they are marked down as identical twins! Both boys have some form of ANS dysfunction.

[issie]

Interesting about the twins, one having signs and the other not. Same with my sisters twins. One seems to have POTS and faints the other seems fine. They are 12 years old.

Issie

[mwise]

I have OHD and autonomic neuropathy which was diagnosed in Dec. 2010. I have identical mirror image twin 17 yr old daughters who I had genetically tested to find out if they were identical which they were with 10 out of 10 concordant (identical) genes ( they only needed 7 out of the 10 to be considered identical or monozygotic twins). In the past couple of years, my one daughter has complained of feeling light headed when taking warm/hot showers or in the heat and also weak and fatigued on & off especially when she doesn't hydrate well during sports. She had a really bad infection last summer which she has never quite been the same with her endurance. She was treated with 3 antibiotics at the time. She was tested for mono and found negative. My other twin daughter has been fine. I am now wondering if the one twin daughter has it? I am in agreement they should do some studies with families and twins. Next time I see my neurologist at Cleveland Clinic, I am going to ask about doing some genetic studies on our family. Anyone out there having this done, please share or keep us posted.

[Thomas]

@puppylove Monoamniotic means they were in the same amniotic sac... which is high risk because one or both may not have survived due to tangled cords. During the pregnancy we went for ultra sounds multiple times a week to see if they were getting tangled... which as it turns out they were and my wife had an emergency C-Section.... looking back at it.... it was somewhat funny.... the operating room was a couple of floors above where ultra sounds occurred and instead of putting my wife on a bed or in a wheel chair we all ran up the stairs to the operating room and it seems like in a matter of minutes the girls were here.... They were 10 weeks early and had to stay in the NICU for awhile, but much better than the alternative.

@dani it would be interesting to know what the gene is.

@mwise Thank you! We talked to our daughters cardiologist (CHOP doc specializing in dysautonomia), he didn't think it would add value... however I continue to ask him and others... seems like an opportunity just waiting to happen..... not that our daughter's twin would be thrilled about it :-)

@anna Thank you!

@issie Thank you!

[julieph85]

Thomas, I feel for you and your wife. I have 2 year old identical twin daughters and for the first half of my pregnancy they told me they were mono amniotic. Scariest time of my life but thank god they saw the separating sac wall in the 2nd trimester. Im so happy they were okay!

[RichGotsPots]

I found this, I hope it helps :

An epigenetic mechanism (hypermethylation of CpG islands in the NET gene promoter region) that results in reduced expression of the noradrenaline (norepinephrine) transporter and consequently a phenotype of impaired neuronal reuptake of norepinephrine has been implicated in both postural orthostatic tachycardia syndrome and panic disorder. http://jop.sagepub.com/content/20/4_suppl/60.abstract

Not exactly gene testing but some kind of marker. I have read many studies and I have read awhile back about gene studies with families, but I don't remember if they are from clinics in the states or abroad...

[ramakentesh]

Vanderbilt are conducting research on twins in an attempt to see if there are genetic or acquired abnormalities in the twin with POTS.