Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

1,560 Members
7,095 Posts
0 Online
Muscles & Bones
/ Chronic Fatigue Syndrome Support Group

Has anyone been to Mayo Clinc in Minnesota for CFS

Phoebes-Ma
Phoebes-Ma

Hi, I"m new here, this is only my second post. I'm trying to figure out how to help my daughter, we have been to specialists of all kinds where we live, plus in Chicago and in St louis and we just keep coming up empty handed or end up with doctors that are jerks. Like the oncologist that after 5 minutes told my daughter shes just simply depressed (She isnt). Has anyone been to Mayo Clinic for their chronic fatigue? At this point given the way almost all of the other doctors have been we've lost faith any of them are going to be any different and Mayo is over 6 hours from us.


Thanks...

triunfadora
triunfadora
Never been to Mayo, but I did go to Johns Hopkins Hospital in Maryland. They were able to diagnose me with NMH, POTS, and ME/CFS. They take you seriously there and they have the kinds of tests that smaller communities don't have. Your daughter is not just depressed. This is a real illness. Thanks for advocating for her. Blessings.
aussiedi
aussiedi
Hi there.I am unable to help because I'm in Australia.and have never been to The Mayo Clinic. The positive is that your daughter is young and there is some very dedicated research happening these days. ! Keep in connect with Bluebonnet here at DS , she may beable to advise you on where to take your daughter. I'm sorry for your daughter and the stress your family must be going through. Hugs Di.
Bluebonnet08
Bluebonnet08
So sorry your daughter is going through this. I would start with an autonomic center if possible. A lot of autonomic conditions go hand in hand with ME/CFS. I am not sure about a CFS specialist. The problem is that they don't know what causes the disease... they are currently searching for an answer. The "specialists" that I saw were really, really unhelpful.. (went to a top CFS center).
There is a lot of research going on at The Open Medicine Institute.
The best help I have gotten for ME/CFS are weekly IVs and staying under my anaerobic threshold (they can do a test to determine that). Also getting ferritin, Vit D, and B-12 in range have helped a bit.
heatherv
heatherv
I have not been to the Mayo Clinic but did go to the Cleveland clinic. I left disappointed. I was trying to get a second opinion on whether I had MS. The neulogist ruled MS out which was good. He is the first Doctor that took my severe fatigue seriously and gave me a diagnosis of chronic fatigue. He wrote a letter to my primary care Nurse practioner who put me on a low dose of Ritalin which had made a huge difference in my fatigue level. Before I would hit what I called a brick walk of fatigue at 4 pm. Now I do get fatigued around 7 but not as bad. So while I was disappointed that the doctor at the Cleveland clinic did not refer me to a specialist there, in the end I did get some help from my primary care. It is frustrating that it took a trip to the Cleveland clinic to be taken seriously . I also had been told I was just depressed and stressed