Ehlers Danlos Syndrome, MCAS, POTS, and MALS
I am getting pretty frustrated with the health system. I live in the Minneapolis area and drive down to Rochester frequently. When I went down to Mayo back in 2017 I met with genetics and he diagnosed me with hyper mobile EDS, and now I think I meet more of the criteria for classical EDS but no one at mayo will do the genetic testing for me! I was down at mayo this week and I brought up testing for MCAS and MALS and I once again was told we can’t do testing because we don’t have anyone who specializes in those things. My stomach is pretty messed up I have mild gastroparesis take lots of zofran. I am hoping to get iv zofran to use with my port. If anyone has any suggestion for gastroparesis that would be great also! I also have pots and have a port and want to get either in home infusions or I’ll go to a clinic. If anyone has thoughts about how to get fluids that would be great. I also got referred to the POTS clinic but I was told by the doctor the POTS clinic doesn’t so IV fluids. Also joint pain is pretty bad and if anyone has suggestions for that also. Wondering if anyone has been to the mayo EDS clinic in Jacksonville? And how was it?
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I thought Reglan was used for gastroparesis. Do you take hydrocortisone for the POTS?
There are a number of meds for gastroparesis. Some people do not tolerate Zofran, Reglan is the often the next choice.
I didn't know Zofran was used for gastroparesis! (I cannot take Zofran and was prescribed Reglan for vertigo-induced nausea).
I tried reglan and it made me extremely tired. Zofran is the only thing that works with also promethazine! But really hoping to get iv zofran. My body has a hard time tolerating and metabolizing pills.
I take hydrocortisone for Addisons. I take Midodrine for POTS
I looked up Midodrine. My bp was 78/50 this morning. I am taking a med that lowers bp 10-20 points (systolic) and ended up in hospital with afib triggered by the low bp. I am going to ask my doc. I spend hours every morning trying to get my bp up so I can take the med!
I was suspected of having Marfans syndrome. My doctor at the Mayo Clinic in Florida ordered genetic testing through a company called Invitae. I had the aortopathy panel that covered 25 different genes. They also have a test that covers just Ehler's-Danlos syndrome and checks 17 different genes.
Do you think the Arizona Clinic does the same testing? I’m trying to find EDS genetic testing and MCAS testing with treatment plan.
I have ED hyper also. I used to have gatroparisis too. My medicine (gabepentin) was causing it. I stopped it cold turkey which I do not suggest but was just so desperate. Within 6 months I was eating again and doing fairly well. I had to slowly introduce stuff a little at a time but was well worth it. I am now 2 years out and have put my weight back on (as I was down to 104 lbs and tired from no nutrient absorption). Today I am at 155 lbs and active and retaining muscle mass again. I am actually 20 lbs overweight and working on that but is because when I could eat again I went " hog" wild (pun intended) 😆 I am using cbd gummies at this time and am off all pain medication. Once in a while I may have to take a Tylenol #3 if overdo. I used to take diladid 4 times a day to control my pain. And that was with gabepentin. NO MORE !!!! Praise God !! I hated the effects of those pills. I take one 25 mg gummy a day and 2 aleeve. Take a multi vit and fish oil. That's it !!!! I hope this helps in any way. But if can read up on all the side effects on meds you are on. I do physical therapy to keep things all in check also. That is just a lifetime regimen for us with ED hyper. Got to keep muscles strong to hold ligaments and tendons in place. My opinion is pain medication serves a purpose for short term but actual does more harm to pain if long term use. We all need to change our lifestyles and quit depending on a miracle pill to solve our issues. I am on an antiinflammatory diet also and has helped immensely. What we feed our body will affect how it reacts. God bless you and hope you find a geneticists. I actual got lucky and found one in Springfield IL. (Julie Fleischer) who did my testing for me. She also did other genetics for ovarian and breast cancer. Be blessed.
Hi @chefdecemberskye and welcome to Mayo Clinic Connect. All three sites offer similar testing depending on what specialty you are looking for and what physicians they have staffed. You best bet is to call Arizona and ask them directly: 480-301-8484
What is your current diagnosis?