Ehlers Danlos Syndrome, MCAS, POTS, and MALS

I am no medical professional but van only tell my experiences. I "was" always tired and having to take naps by 1-2 p.m sometimes earlier in day. Lack of concentration also. I started using the cbd gummies bears and major improvement. I have lots of tummy issues so try to watch what medication I put in my system. They cause me no problems but give me much needed energy and alertness. The way it was explained to me is that it helps release the dopamine and serotonin levels in the brain which in turns releases the flow of oxygen thru your system. My pain level has decreased immensely and tenderness of all joints. Me and my pup are now up to walking a mile at least 3 times a week and back to being able to do my own housework at my pace of course. I can still overdue if I'm not careful due to how bright my mind is and body feels. It's been a blessing for me. I pray your daughter find what works to relieve her symptoms. It's major hell living with this illness. It's been a total turn around for me is all I can say plus it's all natural. That's what I like the most no man made chemicals involved!!! Best wishes to your family and all other sufferers out there.

One more thing-- make sure you find a genuine company with the real deal as so many fake ones out there trying to make a buck off us desperate sufferers. If want info where I get mine I'd be glad to send it to you. I jave posted it to others out here also if van find that post. Either way it's my pleasure to help.

Have you had any success? I have the same symptoms and Drs state I probably have hEDS, but are hesitant to actually put that as a diagnosis.

I am going to the dysautonomia clinic in Rochester in a couple of weeks, but I worry they will just write me off and tell me the treatment I am already doing. Which, I may just have a break down after.

It shouldn't be so hard to get a proper diagnosis for something that SERIOUSLY affects the quality of life we have.

Shouldn’t but is. Time is so long to get the right place, lab, results, information, plan. Candie waiting!!

So disappointing to be at The Mother Ship and feel unheard. Don't know if this is helpful, but I went to the Mayo Jacksonville campus and was seen by Dr. Dacre Knight there. He heads up their Ehlers Danlos specific clinic. Incredible teams all phenomenally well versed in EDS from the OT, PT to Gyn, pelvic floor therapists, etc. It was remarkable. Dr. Knight is passionate about EDS and helping our community. He diagnosed me with hEDS and Fibromyalgia, but also ran the genetic test to rule out any of the genetic EDS varients. Lastly, he explained what was what and demystified so much of this. Ran and SNIPS test too, so now we know what meds work for me and which will be ineffective. Most important, now we know that I hyper rapid metabolize some meds that make them dangerous for me. If you can swing getting to him I really believe in him and his team. I'm 51 and have lived with this my entire life. Finally felt seen, heard, validated and supported.

I just had an appointment at the Mayo Clinic Jacksonville EDS clinic and it was definitely worth the wait and travel. I was able to do genetic testing for all subtypes with genetic variants as well as clinical evaluation for hEDS for which I was diagnosed. I was referred from my provider in Rochester. Had a great experience. Wish you well in your search!

It's sad that you had to travel to Jacksonville when we have access to Rochester. I was hoping someone at "the mothership". ( we call Rochester that as well in Eau Claire) would be able to help with a diagnosis.

Hi, I just logged on to the EDS group to see how people got diagnosed. How current is this information, as far as Dr. Knight goes- and is there a clinic elsewhere that people have had good experience with? I live in the Boston area.
Thanks!

Actually, at Mayo.
I notice these posts are mostly from 2023 and before. How current is this group? Is there a moderator?

Hi @gpowr23, welcome. Dr. Darce Knight heads the EDS Clinic at Mayo in Jacksonville. You may wish to follow the EDS expert blog here:
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

Here's more information about the history of the clinic and the clinical team
https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/tab/history/#ch-tab-navigation

Are you at Mayo Clinic in Florida?

Hi Colleen,
Thanks for the links.
No, I'm actually in the Boston area.
I'm in the process of applying for surgery with Dr. Fogelson, a 2nd spine surgery, the first one was in Jan. 2023.
My recovery may have been affected by some sort of "connective tissue disorder"- I had genetic testing about 10 years ago- when there wasn't yet a test for hEDS.