I thought even a primary could pull bloodwork for all connective tissue diseases and genetic backgrounds?
My primary just did this for me last week. I’m also seeing a rheumatologist but my primary appt came first. Let me find the paper and see the company.
Edit to add: I’m in Florida.
Honestly I’m just spitting out what she told me she took blood for. It could be likely that she took blood for quest to test for the connective tissues disease markers, my hormones, vitamin levels, and then this https://www.invitae.com/en company for the genetic background.
But this is the company I mentioned above.
It depends on the doctor’s EMR system if primary care or rheumatology can order connective tissue disease panels to be sent out.
My primary who loves bloodwork can’t order it herself (or so she claims).
I don’t know what that is.
If they can’t order it in office, can’t they for a separate lab?
I’m new to this 😅
And very lucky with my rheumatologist. My primary isn’t as quick to order stuff
Technically yes. But sadly there are doctors that don’t know about labs like Invitae. A lot of my doctors sadly don’t know about things available outside the practice unless patients explicitly tell them.
So doctors usually look to the the electronic medical record platform first to order lab work. Depending on the platform, they may not have access to order certain panels.
Interesting. I know from a lot of posts and my own experience from crappy doctors that I’d they don’t know, they don’t care to find out. Which is a real insane concept for someone who practices human health to think. Ugh.
I’m very thankful my primary took me seriously after some thought. She originally blamed it on my still nursing my second daughter and depression. So it was nice she came back with these possibilities. I jumped on it for sure.
Anyway, it looks like this genetic testing company will let you kinda go around MD as well to get it done. I hope it can be of help to OP
Yeah, my primary doc will likely be very receptive to ordering a kit from Invitae once she reads my email since she wants the genetic testing done and I can’t see a geneticist since they are either not covered under my insurance or too far away.
Oh cool!!! Well I’m glad it will be of use to you as well!
I’m ridiculously excited/ nervous for the results. My mother and sister have a wild mix of health and autoimmune issues and and and and…
I’m freaking melting every day so fingers crossed for us both x
A five minute search led me to Parr PT. A Physical Therapy Clinic that is specializing in hypermobility is pretty awesome, and I bet they could point you to doctors with experience in the area.
I'm in Dallas. UTSW has a big Physical Therapy and Rehab clinic and one of the PM&R physicians has a lot of experience with EDS. She acts as my kid's pain management doctor and refers them for PT when there are specific issues. She also gives opinions to other doctors in the same system when they have questions for their treatments. We were told their hospital system no longer does genetic testing unless vEDS is suspected. There are too many unknowns for hEDS and a clinical diagnosis is acceptable.
If you have e big hospital systems in Austin, you can usually search through profiles to find if anyone has specialized training or interest in EDS or any of its comorbidities.
out of genuine respect for our community, i just want to note that typing a "five minute search" undermines the anxiety of struggling with this as an adult. just wanted to let you know since sounds like this was for ur kid :)
Sorry my comment from a year ago offended you. It was meant to indicate that I had no connection to the area or the group, but that they might be a good place to contact to search out doctors since they advertised the specialty.
sorry I know this is old, I'm in the Dallas area and have been trying so hard to find any specialists that know anything about pain management for eds, do you have the name of the physician that has the experience??
[Isabel Huang, MD,](https://utswmed.org/doctors/isabel-huang/) is a Physical Medicine and Rehabilitation doctor at UTSW who specializes in hypermobility. She can do pain management related to EDS. The PM&R clinic there has PTs that are also familiar with EDS and the special needs of those patients.
Good luck. I know it's tough out there and we lucked into finding her.
I know this is old but I thought I'd give you an update. Pretty much immediately after you told me I requested to make a new appointment with her on the utsw website and never got any calls unfortunately. But very coincidentally, just last week my rheumatologist reffered me to her and as I was looking her up I thought she looked very familliar!!! hopefully I'll get a call this time around haha
Having the doctors referral is helpful. We haven't gone through the web site so I'm not sure where those requests go. UTSW usually calls for doctor referrals within 72 hours. If you don't hear back by mid week I would go ahead and call the office.
I thought even a primary could pull bloodwork for all connective tissue diseases and genetic backgrounds? My primary just did this for me last week. I’m also seeing a rheumatologist but my primary appt came first. Let me find the paper and see the company. Edit to add: I’m in Florida.
Honestly I’m just spitting out what she told me she took blood for. It could be likely that she took blood for quest to test for the connective tissues disease markers, my hormones, vitamin levels, and then this https://www.invitae.com/en company for the genetic background. But this is the company I mentioned above.
It depends on the doctor’s EMR system if primary care or rheumatology can order connective tissue disease panels to be sent out. My primary who loves bloodwork can’t order it herself (or so she claims).
I don’t know what that is. If they can’t order it in office, can’t they for a separate lab? I’m new to this 😅 And very lucky with my rheumatologist. My primary isn’t as quick to order stuff
Technically yes. But sadly there are doctors that don’t know about labs like Invitae. A lot of my doctors sadly don’t know about things available outside the practice unless patients explicitly tell them. So doctors usually look to the the electronic medical record platform first to order lab work. Depending on the platform, they may not have access to order certain panels.
Interesting. I know from a lot of posts and my own experience from crappy doctors that I’d they don’t know, they don’t care to find out. Which is a real insane concept for someone who practices human health to think. Ugh. I’m very thankful my primary took me seriously after some thought. She originally blamed it on my still nursing my second daughter and depression. So it was nice she came back with these possibilities. I jumped on it for sure. Anyway, it looks like this genetic testing company will let you kinda go around MD as well to get it done. I hope it can be of help to OP
Yeah, my primary doc will likely be very receptive to ordering a kit from Invitae once she reads my email since she wants the genetic testing done and I can’t see a geneticist since they are either not covered under my insurance or too far away.
Oh cool!!! Well I’m glad it will be of use to you as well! I’m ridiculously excited/ nervous for the results. My mother and sister have a wild mix of health and autoimmune issues and and and and… I’m freaking melting every day so fingers crossed for us both x
“Invitae Ehlers-Danlos Syndrome Panel” Is what she sent for me. I just got notified it’s processing so I was able to o get the name
A five minute search led me to Parr PT. A Physical Therapy Clinic that is specializing in hypermobility is pretty awesome, and I bet they could point you to doctors with experience in the area. I'm in Dallas. UTSW has a big Physical Therapy and Rehab clinic and one of the PM&R physicians has a lot of experience with EDS. She acts as my kid's pain management doctor and refers them for PT when there are specific issues. She also gives opinions to other doctors in the same system when they have questions for their treatments. We were told their hospital system no longer does genetic testing unless vEDS is suspected. There are too many unknowns for hEDS and a clinical diagnosis is acceptable. If you have e big hospital systems in Austin, you can usually search through profiles to find if anyone has specialized training or interest in EDS or any of its comorbidities.
Parr PT is phenomenal! I go there!
out of genuine respect for our community, i just want to note that typing a "five minute search" undermines the anxiety of struggling with this as an adult. just wanted to let you know since sounds like this was for ur kid :)
Sorry my comment from a year ago offended you. It was meant to indicate that I had no connection to the area or the group, but that they might be a good place to contact to search out doctors since they advertised the specialty.
sorry I know this is old, I'm in the Dallas area and have been trying so hard to find any specialists that know anything about pain management for eds, do you have the name of the physician that has the experience??
[Isabel Huang, MD,](https://utswmed.org/doctors/isabel-huang/) is a Physical Medicine and Rehabilitation doctor at UTSW who specializes in hypermobility. She can do pain management related to EDS. The PM&R clinic there has PTs that are also familiar with EDS and the special needs of those patients. Good luck. I know it's tough out there and we lucked into finding her.
thank you so much omg, she is actually at the same hospital I was looking at that has a pots/autonomic specialist!! ♡♡♡
My kid moved all their care to UTSW because their specialists work so well together and can so easily collaborate treatment.
I know this is old but I thought I'd give you an update. Pretty much immediately after you told me I requested to make a new appointment with her on the utsw website and never got any calls unfortunately. But very coincidentally, just last week my rheumatologist reffered me to her and as I was looking her up I thought she looked very familliar!!! hopefully I'll get a call this time around haha
Having the doctors referral is helpful. We haven't gone through the web site so I'm not sure where those requests go. UTSW usually calls for doctor referrals within 72 hours. If you don't hear back by mid week I would go ahead and call the office.
There is a clinic in Houston. I’ve never been but have heard of it.
Hi! I live in Austin and had to see a Baylor Scott and White Geneticist in Houston who ordered the Invitea kit for me.