Ehlers Danlos Syndrome, MCAS, POTS, and MALS

Posted by carolinebrown1995 @carolinebrown1995, Oct 14, 2021

Hello,
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?

Interested in more discussions like this? Go to the Bones, Joints & Muscles group.

I thought Reglan was used for gastroparesis. Do you take hydrocortisone for the POTS?

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@windyshores

I thought Reglan was used for gastroparesis. Do you take hydrocortisone for the POTS?

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There are a number of meds for gastroparesis. Some people do not tolerate Zofran, Reglan is the often the next choice.
Sue

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@sueinmn

There are a number of meds for gastroparesis. Some people do not tolerate Zofran, Reglan is the often the next choice.
Sue

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I didn't know Zofran was used for gastroparesis! (I cannot take Zofran and was prescribed Reglan for vertigo-induced nausea).

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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.

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@windyshores

I thought Reglan was used for gastroparesis. Do you take hydrocortisone for the POTS?

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I take hydrocortisone for Addisons. I take Midodrine for POTS

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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!

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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.

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Do you think the Arizona Clinic does the same testing? I’m trying to find EDS genetic testing and MCAS testing with treatment plan.

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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.

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@chefdecemberskye

Do you think the Arizona Clinic does the same testing? I’m trying to find EDS genetic testing and MCAS testing with treatment plan.

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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: 800-446-2279

What is your current diagnosis?

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@chefdecemberskye

Do you think the Arizona Clinic does the same testing? I’m trying to find EDS genetic testing and MCAS testing with treatment plan.

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Mayo Jacksonville, Florida, has an EDS/hyper-mobility clinic. The wait for an appointment is long, and the genetic tests are sent out to a third party. They refer you to occupational and physical therapy, and order any other necessary tests for diagnosis. To my knowledge, there is only one doctor running the clinic, but he is very good.

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Hi I'm new to this sight and have a child with EDS hypermobility type 1 diagnosed 2 years ago. There is really no specific doctor for this in my area. I 'finally got her into the genetics clinic last month and yes it took 2 years. Finally we can get the EDS panel. she had been seeing a neurologist for 5 years for headaches and it was when I switched neurologists they found she has a Chiari 1, in addition she has had syncopal episodes and said they are not related. They did an EKG and Echo which showed 2 "trivial leaky valeves" and essentially said do not worry about it. I only knew 1 other person whose brother died from EDS due to his Aorta bleeding. Can you please let me know are these sx all related to EDS: headaches, syncope, red skin blotches that come and go with the sun, scoliosis, chiari 1 and every day stomach pain?? We get different answers with each doctor. Please let me know who is best at following her as this search for answers is exhausting and frustrating. She also has hypoglycemia, Low Iga, low Ceruplasm and Low acety lab tests. Her first cousin has FMD and had a Spontaneous Coronary Discretion that caused her to have 5 stents to her LAD and now has a DeFibrillator. I am concerned for my daughter so any help is appreciated. I am really proactive for her to live her life as she is going to college next year and she needs to stay proactive. She has seen many specialists and only 1 doctor Prescribed PT for hypermobility, but when your daughter states "Mom why dont they believe me" It is heartbreaking. Thankyou!

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