Ehlers Danlos Syndrome, MCAS, POTS, and MALS

At the risk of taking this discussion off-topic, I want to introduce you to @jenniferhunter, a fellow patient of Dr. Fogelson.

Jennifer, can you suggest a discussion in the Spine Health group to continue the discussion with @gpowr23? I don't want to detract from the original topic of this discussion on EDS.

@gpowr, there are EDS specialists at Mayo Clinic in Rochester should you wish to talk with your Mayo care team about a referral.

@colleenyoung @gpowr23, Gail, and I have been communicating because of this discussion about scoliosis and also privately because of her experience after an adverse result of a big scoliosis surgery and she didn't want to cause alarm to other patients contemplating surgery. She is seeking another opinion for Proximal Junction Kyphosis where kyphosis with forward bending happens at the top of an instrumented fusion.

Spine Health - "How do you manage the effect of Kyphosis and Scoliosis?"
https://connect.mayoclinic.org/discussion/kyphosisscoliosis-effects/

We also have these 3 discussions about scoliosis in Spine Health:

Scoliosis
https://connect.mayoclinic.org/discussion/scoliosis-3/

Spine surgery for scoliosis
https://connect.mayoclinic.org/discussion/spine-surgery-for-scoliosis/

Severe scoliosis
https://connect.mayoclinic.org/discussion/severe-scoliosis-1/

Hi @gpowr23- I hope the other links and moderators/volunteers are helpful and it's great to see them jump in to help point you forward 🙂

You may be aware of this, but just wanted to say there isn't a genetic test for hEDS. It's the only form of EDS that doesn't have a genetic test. Instead, there are diagnostic criteria: https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf

In theory, any physician (a PT actually did my first one, but I don't think they're able to make that type of diagnosis) can review it, but at least in my experience most providers don't consider themselves to have enough experience to do so with authority. But if your care team at Rochester thinks a connective tissue disorder like hEDS or HSD might be impacting your recovery, maybe it would be worth asking for a consult with one of the EDS specialists there?

Turns out, I also have scoliosis and had a spinal fusion. It's rough. I'm wishing you all the best with your recovery.

Mayo Clinic in Jacksonville, Florida has an EDS specialty clinic! My daughter just set up her appointments. She received inaccurate information when calling Mayo Clinic in Rochester telling her that Jacksonville EDS clinic wasn't available any more when actually it has grown. For appointments or more information, call 904-953-0869 or the Ehlers-Danlos Syndrome Clinic in Florida appointment office at 904-944-3149 8 a.m. to 5 p.m. Eastern time, Monday through Friday or complete an online appointment request form.

@maj7499, you're right that the EDS Specialty Clinic at Mayo Clinic in Florida exists and is growing. I will look into the info that Rochester is sharing.

You may also wish to follow their blog here written by Dr. Knight and team:
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

I'm thankful that your daughter's appointments have been scheduled. Will you be accompanying her?

Colleen, we were disappointed that Rochester Mayo doesn't have an EDS Specialty Clinic as we live only an hour away. But my daughter has appointments at Jacksonville. I will be accompanying her to Florida but watching her children while she and her husband go to the appointments. It wasT very disappointing that she didn't get accurate info when she called Rochester Mayo, she could have gotten in much earlier to help her struggles. The woman she spoke to also had terrible customer service skills with no "bedside manner" with no patience and was quite short with her. Thank you for looking into that situation, we wouldn't want anyone else to receive inaccurate information.

I haven't found anyone offhand in Rochester that has knowledge of hEDS.

I live in NW Wisconsin and no one that I know offhand in Eau Claire is comfortable with giving a diagnosis.

There is even a screening in our Epic system for hEDS, yet I cannot find a Dr comfortable to give a proper diagnosis.

I was highly disappointed in the Neuro Dr I saw for dysautonomia. I did mention the correlation between dysautonomia and hEDS and she literally stated "It doesn't matter, as there is no cure and you have to live with it anyway:"

If anyone has had health issues over YEARS and continually told you are completely fine, it takes a lot on your mental health to not be validated.

I do currently have a family Dr who has done more for me and listened more than the specialists I have seen.

Did I mention I even work for Mayo? If I go outside of the Mayo network, my out of pocket cost would be outrageous. It's all very frustrating.

Don't even get me started on finding a surgeon that is knowledgeable with cervical stability.

-Cassie

There are no specialists in Rochester that work with the hypermobile types of EDS. At least, that I am aware of.

If you need to stay in the Mayo network, Jacksonville, Florida has a EDS specialty clinic. Long way to travel but my daughter got fed up with no one understanding her complex inter-related health issues so will traveling there from Minnesota. Frustrating that we live an hour from Rochester, Mayo and they don't have anyone with an EDS specialty.

Thank you for your reply!

I will have to see if I can get a referral there. Right now, I am rather broke from life in general, and I have thousands in medical bills due to my recent neck injections.

I would definitely go if I could afford it.