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Should i go to Mayo Clinic?

Messages
57
I know of 2 patients who were accepted there. It was a disaster for both, sadly. :( It sounds good but didn't pan out, the docs didn't talk to each other....With one friend they made a very basic mistake (carelessness) that could have killed her...if she hadn't caught it.

Sushi

Ah damn... Kinda sounds like the Mayo Clinic then. What's the point in starting this program if they don't even try?
Out of curiosity, do you know what type of symptoms they have/did have and for how long they had been investigated before being accepted?
 
Messages
57
I did not have a known condition before I went to Mayo and they missed a really obvious diagnosis (the minute I read the symptoms I knew without a doubt I had it) and never diagnosed me with CFS - but tried to give me GET/PACE (just didn't call it that) as a treatment.

So, Mayo is known for being top of the field for identifying things that fit into nice, neat categories. They don't do so well with everyone. I was told 50% of their patients walk away without diagnosis and some of those they shunt off to psychiatric treatment.

I'm not saying no, that they won't help. But I did want to clarify that most of us went to Mayo to get diagnosed and still didn't end up with a good end result.

Thanks for telling your experience with Mayo, and its a shame it didn't work out.
When i started this thread i was 85% sure of going there but now its the opposite, it seems to be to much of a long shot at this moment. As i probably have a rarer disease then most of those 50% they probably wont figure out what i have either.. I will try my chances with this undiagnosed program instead as i probably don't have to pay as much if they accept me.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Out of curiosity, do you know what type of symptoms they have/did have and for how long they had been investigated before being accepted?
ME symptoms with POTS. I'm not sure what you mean about how long they had been investigated before being accepted? Do you mean by the NIH or other doctors?

Sushi
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
I spent 2 weeks getting blood test (19 tubes) plus gases, urine test, stress test, thermoregulatory test, vascular test, nuclear bone scan, MRI's and lymphoscintigraphy (injected nuclear dye between the toes)!!! They wanted me to stay longer and have a sleep study, but I wasn't staying any longer since I had already had 2 previous sleep studies.

I never was asked to see a psychiatrist!

All I got was a referral to the Hunter Hopkins Ctr. (which is only 20 miles from my house) and a bill for approx $31,000.
I did get 5 or 6 various diagnosis, 3 or 4 of them I had before I went. The only positive thing that may have came from it was that I got my CFS diagnosis within 3 years of onset due to the Mayo Clinic excluding everything else.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I went to Mayo just a couple of weeks ago. They put me through the testing wringer, but that's what I went there for, so I can hardly complain on that count. Here are my issues:

1) The physicians do not speak with one another.

I was getting parallel diagnostic tests for POTS and adrenal insufficiency, and the docs did not communicate. If I asked endo about POTS or neuro about adrenal, they'd give me blank blink-blink looks and say, 'that's not my specialty'. (But I'm asking you how it RELATES to your specialty! Did not seem to matter.)

2) The testing is sometimes horrifyingly painful.

I would not want to discourage anyone from getting needed testing, but if they hook your legs up to electrodes, RUN, do not walk, away. When I gasped and teared up and said 'I can't do it, I can't do it', the lady performing the test looked disgusted and began baby-talking at me. My next (far gentler) autonomic test, where they ran a low current down my leg to measure transmission (felt like prickles), both techs admitted they'd transferred over from that department because they couldn't take the pain their patients experienced. "It's torture," they said. Yep. I'm sure everyone has different levels of sensitivity, but the point is that horror and agony WAS the 'typical' reaction. Not only is that the case, but the attitude of the first tech made it seem like I should just buck up and take it or I was a child.

3) Some of the testing was unnecessary.

Looking through the tests that were done - and there are twelve or thirteen pages of results - is ridiculous. I sat down with an (excellent! amazing!) GP who, while not expert in ME is still very knowledgeable, and she couldn't make heads or tails of why they'd ordered certain things.

4) The physician quality varied wildly.

Take my endo - not super-knowledgeable, but sympathetic, kind, and willing to talk science - and one of my neuros - very knowledgeable, kind, and willing to talk science - and contrast them with the allergist I saw, who got numerous medical facts wrong about me on her final report (including the diagnosis I had so far!) and treated me so dismissively and rudely that I actually wrote a letter to Mayo. She denied I had "any sign" of allergic reaction, despite already having certain Ig results that directly contradicted her.

5) The tendency is still to be dismissive.

The default attitude of a doctor should be warm, accepting, and caring, not perpetually dubious with one brow raised. Even the endo who I generally liked didn't start from the assumption that I was actually ill, but rather had a generally open, yet "we'll see" kind of attitude, which only shifted once she had evidence SHE considered concrete: lab values. When I reacted poorly to cortisol, she assured me this was impossible, and also that cortisol is the only treatment for adrenal issues, neither of which is the case.

6) The tendency is still to be close-minded.

I thought that once I left my local docs, I wouldn't hear "but that's rare" as a reason to exclude a diagnosis. Or, "but you're too young to have cardiac issues." Yet... I did hear that sort of thing, and more than once.

The pros:

1) They will run whatever the hell kind of test you want, generally.
2) They operate like a well-oiled machine; appointments generally happen on time, and most doctors don't yank you in and shove you out the door. Instead, they appear to have actually budgeted a reasonable amount of time for each appointment.
3) They have every test on the planet available - even stuff like Total Blood Volume via spectroscopy, which is pretty cool in contrast to the injection of radioisotopes, which is how other hospitals do that.

So. There's my two cents. I admit, I wouldn't recommend it.

Edit - one more (important!) thing to add to the positive column:

4) Mayo is still VERY well-respected. Despite the fact that their standard of care seems to be dropping, the general public and most doctors aren't aware of this.

If you walk into the office of a new doc and you let them know you have this-or-that labwork, or this-or-that diagnosis and they give you the skeptical eyebrow of doom, watch how fast their attitude changes to respectful surprise if you can add "from Mayo Clinic". If the results are from Mayo, you can almost see them thinking, PERHAPS WE DON'T NEED TO DO ALL THOSE TESTS AGAIN. Halle-freakin'-lujah.

It's actually one of the main reasons I went there. I suspected that if I got a diagnosis from Mayo, no one would ever contest it. If I had irregular results from labwork done at Mayo, no one would insist on redoing it "just in case". They'd just accept the Appeal to Authority that Mayo's name/logo presents and pick up wherever Mayo left off. So I guess I'd say "if you want a diagnosis no one can contest, go to a place like Mayo."

Just be aware that it can work against you, too. If they hadn't found anything concrete, I would be up the creek without a paddle, and it's sheer luck that they did, because their 'diagnostic process' is pretty screwy.

-J
 
Last edited:

kit

Messages
85
Location
USA
The first year I was sick, I spoke to a physician who works at Mayo clinic who I was acquainted with socially. When he heard my symptoms he advised me to NOT got to Mayo clinic. My symptoms at that time were: chronic swollen glands, sore throat, extreme/atypical exhaustion, heaviness in my limbs, muscle weakness, difficulty walking, difficulty remaining upright, difficulty concentrating and thinking in general, widespread pain and worsening of all symptoms after exertion.

Best of luck finding a doctor who can help you.
 
Messages
57
Hello Everyone,

Thanks for all the comments. I will never go to Mayo Clinic, instead my plans are the following:

1. I will apply to the NIH Undiagnosed Program and with over 90% chance they will turn me down.

2. As it looks right now i will visit Dr. Kaufman and the Open Medicine Institute in June. When i wrote my story to him he was fascinated and said that he never heard anything like it. And he also came with stuff that we can test or what it was that Accutane affected positively in my body. It really felt that he can be someone who can help me solve this mystery.
I wish there was a Dr. Kaufman type in Europe but i haven't found anyone.

3. The absolute last thing i can do is to take Accutane again and video document everything.
Assuming Accutane cures me again i think this could give enough information to the doctors to find out whatever disease i have.
My plans are to meet different specialists and doctors at 3 different stages, right now, when im cured and when im sick again.
For example i will meet one or two dermatologists to try and prove that my hair, skin colour and perhaps also the body odour is affected.
And doing the same with my brain capacity, fatigue and my physical health.

Im so damn tired atm so i wont write in detail how i will make this video but if you have suggestions how i should do this i would really appreciate i. I want to film parts where i meet these specialists and when they tell me about their conclusion and (if possible) when they present themselves. But a few of them probably don't want to appear on camera and i have to respect that.
I just have to make this video as convincing as possible, i just have one chance to do this.
 

jeff_w

Senior Member
Messages
558
Hello Everyone,

Thanks for all the comments. I will never go to Mayo Clinic, instead my plans are the following:

As it looks right now i will visit Dr. Kaufman and the Open Medicine Institute in June. When i wrote my story to him he was fascinated and said that he never heard anything like it. And he also came with stuff that we can test or what it was that Accutane affected positively in my body. It really felt that he can be someone who can help me solve this mystery.
I wish there was a Dr. Kaufman type in Europe but i haven't found anyone.
I'm glad to hear you'll be going to Dr. Kaufman! He's the best doctor I've ever known, and you'll find many of his other patients say the same. He'll listen to you, and he loves a good puzzle.

Best of luck!
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Hello Everyone,

Thanks for all the comments. I will never go to Mayo Clinic, instead my plans are the following:

1. I will apply to the NIH Undiagnosed Program and with over 90% chance they will turn me down.

2. As it looks right now i will visit Dr. Kaufman and the Open Medicine Institute in June. When i wrote my story to him he was fascinated and said that he never heard anything like it. And he also came with stuff that we can test or what it was that Accutane affected positively in my body. It really felt that he can be someone who can help me solve this mystery.
I wish there was a Dr. Kaufman type in Europe but i haven't found anyone.

3. The absolute last thing i can do is to take Accutane again and video document everything.
Assuming Accutane cures me again i think this could give enough information to the doctors to find out whatever disease i have.
My plans are to meet different specialists and doctors at 3 different stages, right now, when im cured and when im sick again.
For example i will meet one or two dermatologists to try and prove that my hair, skin colour and perhaps also the body odour is affected.
And doing the same with my brain capacity, fatigue and my physical health.

Im so damn tired atm so i wont write in detail how i will make this video but if you have suggestions how i should do this i would really appreciate i. I want to film parts where i meet these specialists and when they tell me about their conclusion and (if possible) when they present themselves. But a few of them probably don't want to appear on camera and i have to respect that.
I just have to make this video as convincing as possible, i just have one chance to do this.
I went to NIH in 2004 and they diagnosed me very quickly, without a lot of strange or painful testing. I think I just called them up. I lived practically in the neighborhood, however.
 

aquariusgirl

Senior Member
Messages
1,732
Yes, I'd strongly agree with this one.

When I went and was pretty shocked they couldn't diagnose me - they told me that they find over 75% of patients aren't able to be diagnosed (?!)... which seemed high. But that's what the doctor managing my case told me. During the 'treatment' which was basically GET/CBT in disguise, they did finally break down and agree to run a simple test for me - which was when they found out I was b6 toxic.

What test showed u were B6 toxic? there is a syndrome where people get neuropathy from small amounts of additional B6 ......then there are the ppl who apparently waste B6 in the urine. Pyroluria?
 

aquariusgirl

Senior Member
Messages
1,732
Random factoid: Rich Van Konynenburg, an independent CFS researcher, who posted extensively on this forum, said that some folks developed CFS as a result of taking Accutane. You can google for his comments...I'm sure he went into why.. so I find the fact you do well on it surprising .. or maybe inconsistent with a CFS diagnosis, or maybe just suggestive of that.

Google, Accutane, Richvank, phoenixrising...... It could be interesting. good luck.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
What test showed u were B6 toxic? there is a syndrome where people get neuropathy from small amounts of additional B6 ......then there are the ppl who apparently waste B6 in the urine. Pyroluria?
Basic b6 serum test - I did a quick google search and found "serum pyridoxal phosphate" on the Merck web site.

I didn't realize it was a 'syndrome' but will go investigate it. My mother and I both had neuropathy issues off of very low doses of b6 (her situation is how I knew to push to get myself tested). Someone else here pointed me to a site that I can't find again - which is showing that more and more people are being found to be intolerant off of the standard over the counter supplement. I seem to tolerate P5P pretty well, so I was blaming it on something related to genetic and perhaps one of the Methylation/detox genes (though who knows which).
 

PennyIA

Senior Member
Messages
728
Location
Iowa
Yes, exceptionally high levels of b6. I had several doctors refusing to run the test since I wasn't taking a large dose of it. I was googling b6 toxicity now and got 30 pages in a row claiming it's impossible to get toxic on it on less than 500 mg or 1000 mg per day. Which I think I was taking 50 mg per day under doctor's orders and without monitoring. So, obviously something isn't 'quite right' with my dosage and/or my own body's ability to process it.
 

aquariusgirl

Senior Member
Messages
1,732
I can't find the damn page where people were talking about getting neuropathy from low doses of B6.

but then there is B6 wasting in the urine which is supposedly a sign of pyroluria .......I had elevated...like really elevated blood B6....and I think the OAT showed wasting in the urine too. I have a new practitioner...maybe she will have some thoughts.
 

Folk

Senior Member
Messages
217
Can anyone tell me Dr Kaufman e-mail?
You guys think there's a chance he would answer me if I'm not a patient yet?
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I can't find the damn page where people were talking about getting neuropathy from low doses of B6.

@aquariusgirl

Here it is, on another site -- over 1,000 comments, many if not most of them from low-doses:

http://www.medhelp.org/posts/Nutrition/B6-Toxicity/show/2642?page=1

I've found that taking higher doses of B2 helps me tolerate very low doses of B6, but like @PennyIA, I'm going to try the actual P5P itself as soon as I can afford it.

Here's a link that shows that B2 is needed to convert B6 (see Nutrient Interactions):

http://lpi.oregonstate.edu/infocenter/vitamins/riboflavin/#nutrient_interaction

Lastly, here's a study that showed B6 reduces folate, so perhaps that's another reason some of us have problems with B6?:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1647812/pdf/archdisch00869-0060.pdf
 
Messages
57
I have a small problem..
Is there anyone who will go to Kaufman in May or April?
I booked a visit with Kaufman on the 9th of June but i realized that i probably cant go that date.
The prices are much higher (on mainly flights) if i go later that month or July so i'm wondering if anyone wants to switch dates with me?
I always manage to screw up.. =/
 
Messages
57
Just ignore my last reply, i managed to work it out after all. I will go to Kaufman on the 9th of June, and after that visit my wallet will be alot smaller..