Mayo Clinic

[txbriteyes]

Hi ...

My name is Patricia I have Ehlers Danlos type 3,with severe Vascular Weakness, POTS and Chronic Fatique... my son amd mother have this also... My mother is 70, I am 46 and my son is 17. Only thing that has worked for me in the past have been iv hydration from a picc line.. After 7 picc lines in less than 2 yrs.... my doctors were getting concerned I might get a fatal infection... so now since i cant retain fluids I get mini strokes and kidney stones along with all of the other symptoms... Plus I have CDD which i need surgery on the c7 along with my unstable hip, which did not heal after a fall. My son stays so fatigued he has to be homebound schooled...He has lots of POTS issues also.. My doctor said the Ehlers Danlos caused the POTS. Our EDS is very severe.. we have lots of issues there also. We have had this our entire lives but was just correctly Dx'ed last year. It now explains everything we have been through...My doctor felt that the Mayo clinic is very up on EDS and POTS. I sure hope so... Hopefully we will be going next month or early Oct. We will know more tomorrow. I am a very up beat person and I know first hand it can always be worse....but I feel so badly for my son that it has hit him this hard....in the most important years of his life. I told him... we will get him feeling better... but unfortunately when you are so sensitive and allergic to so many things it takes a little longer....but we will get there. He had a pectus repair in Jan. and spent 34 days in hospital because he could not tolerate the pain medication due to his POTS.... Now he is still having pain because of his EDS. He misses being in school ... but we have the most wonderful homebound teachers...We call them our angels. I hope everyone has w wonderful day and I look foward to hearing from you.

Patricia

[goldicedance]

I sure feel for you and your family with what you all are going through. I've been to the Mayo (Rochester) and consulted with Dr. Low and others. Dr. Low was my "primary" at the Mayo. My cardiologist had made the referral to Dr. Low. The Mayo is great at diagnosing conditions and validating treatment or else making other suggestions. It is well worth the trip. I was coming from the East Coast and found it very useful indeed.

[blackwolf]

Welcome Patricia

I've also seen Dr Low, he was a great help to me. He really made a difference in my treatment, just changed one med and wow, I was really good for about 18 months, now I'm having trouble again. Mostly my own fault, not resting like I should. I'm starting a new drug and having alot of good luck, hopefully you will also get the help you need.

Blackwolf

[shelby]

Hi,

I went up to Rochester, MN Mayo clinic too, but I saw Dr. Fealey instead of Dr. Low. I haven't felt better than I have in the past couple of months. He started me on new meds and after they sank in I was feeling much better. I would suggest it.

SHelby

[ethansmom]

I went to Mayo in Jacksonville, FL and saw Dr. Cheshire. I also had a complete workup of tests for everything you can imagine- I thought they were extremely complete in ruling out as well as diagnosis...I think it is a great place to go when you've been everywhere else and you need treatment you can trust. Be prepared for the bills, but other than that I would recommend gong if you feel it's best for you and your family.

I wish you the best, I know what your son is going through and he's got to be a strong kid I am confident that we will continute to learn more about these conditions each and every day, and can only hope that in our lifetime will come the cure.

[txbriteyes]

Thank you so much for the quick replies. How long did each of you stay there... I was told to be prepared to stay for 3-6 days or maybe longer. Did you have repeat testing done.. I sure hope we dont have to... There are just so many tilt table tests you can take.. LOL.. The cardiologist here wants to start my son on 40mg of inderal but i am concerned with his heart rate while sleeping in the 40's.... I have a call in to the Mayo clinic to see if they want us to wait to start the meds until we get there. WE have decided to stay in a short term housing apartment. It has 2 bedrooms, livingroom, den and kitchen... 2 miles from the hospital...with the shuttle included. I couldnt believe it was just under a 100.00 a night. They even stock your refridgerator.. LOL I hope to hear from you soon..

Patricia

[blackwolf]

I was there ( Rochester,MN) for 11 days. 3 extra due to have heart rhythem trouble after one of the tests. I would give you one piece of advise, be ready to go-go-go. I used a wheel chair for most of my appointments as it gets very tiring going from one place to another. They, wheelchairs and appointments, are all over the place. There are also benchs and seatting all over the place. If you can, request maps of the complete complex.

Good luck, Blackwolf

[ethansmom]

I stayed for 5 days each time (went twice over a 3 month period of time). It is a lot of running around, but the staff is great and it's a comfortable place to stay...are you going to MN or FL?