When you are STUCK in the Mayo System, NOW what?

[disillusioned2014]

This is more of a question/Statement. I have dealt with Mayo for my whole life. I was born here. I have had on and off symptoms of MS for years, at least since 2006. But with my history at Mayo I am labeled and am always sent back to Psych! I have be misdiagnosed and over medicated, under medicated and now “It’s all in my head” Now if I repeat their words to them they say “My pain is valid but I need to consider their Pain Rehab Center” “Because I have chronic pain and will most likely for the rest of my life.” I am asking myself, “I do and if I do why?”

I have almost every classic symptom of MS that come and go. Every new “Flare” as you call them I get a new symptom. But I also have a few Mild TBI’s and I have Bi-polar.  

I am on less medication than I have ever been on and I present with more symptoms then I ever have in my life. They come and go, with or without stress.

As soon as I complain of any pain or different symptom I am sent to a neuro doc and as soon as she walks in the door the first question out of her mouth is, “Have you ever had any Neuropsych testing done?” A 10 minute Neuro Exam and she is gone for 20 minutes and she comes back on says she looked at my psych docs notes and recommends I go to the Pain Rehab Clinic that was in 2013. I believe that program is about 40,000 dollars.

I went to another hospital. Took someone with me, that Neuro doc wanted an MRI with and without contrast ASAP, said, “What are we looking at here MS, CFS” Lets find out. I had a possible negative CT when I was 15 so she got that CT and another one that I had in 2011 from an MVA, (No contrast) and the radiologist report said, gray/white matter is within normal limits, but something about calcifications, also impression/report was: possibly representing mild demyelinating disease. That is to me an indication of I need to look farther into the fact this could be MS? Or Not, is it all in my head?

I have tried to read up on MS and ask friends that are Neuro docs that do work at Mayo but really cannot say much that is Mayo’s Policy.  No treating outside of the doors of the clinic.

I have gone to other 2 other hospitals and as soon as they either get my records for neuro for my TBI or records for my neuro for my headaches or even to look at the fact that I have these symptoms and see that I even have a psych history, BIAS right away. Send me right back to Mighty Mayo, the saviors.

I get almost every rare side effect to medications, was so over medicated for so long that I know have permanent side effects from these medications and I also take psych meds currently, 2 and at a very low dose. I believe I must be honest with new doctors in regards to the fact I have a Mental Illness and the medications I take and what I have been on in the past but it I believe “screws” my 2nd, 3rd, 4th, chance at any option at what a lot of other people have told me is a for sure MS Diagnose. No doubt in there minds. Even my doctor friends that have gone off record to tell me “Get out of this town”

It is my understanding that MS will only get worse if you do not treat it at least the symptoms. The sooner you treat it the better chance you have at a better quality of Life. Maybe I am wrong but that is why I am here at this site. I get up everyday just to fight for my basic human right to live as others with respect. Same rights as those that have money, but it doesn’t seem to happen, just gets worse as the world goes on.

Mayo is a great place if you already now what is wrong with you and they can treat you, A treatment clinic only in my opinion. I would not go there for Primary care or to find out what is wrong with me. Unfortunately some people who live here and are on limited income have no other choices, until we move.

Disillusioned2014 and I am looking for a clinic/hospital on the West Coast for help if anyone knows of one that will take Medicare. I am 39 soon, on disability and looking for support and information, websites, etc.

[allmymarbles]

Keep in mind that you are paying the doctors, not the other way around, so condescendtion on their part is way out of line. And here is a tip. When a doctor addresses you by your first name and refers to himself as Doctor so-and-so, reply by saying, "How do you do (his first name), I am Mrs. (your last name)." He will never call you by your first name again. Or, if he does, then both of you use first names.

[disillusioned2014]

one of the 1st questions I get asked is....How can I help you Ms...! Or Why are you here today? What seems to be the issue? (WTH)

I think to myself, Did they not read the note to as why I called and made an appt and the intake work I did. Seriously? Then I am at that point confused, an emotion sets in and I am lost...Emotion=Confusion in my brain like in 2.2 seconds. Called cognitive disorder, Malfunction....That is my TBI in action...!

I like alternative medicine but it costs money, I have a limited income also. But I do what I can.

@SarahL2491.. I like that approach, Very much, Very, very much...! We could talk...

intimidated by doctors, Yes I have been but I am getting better at standing up for me, and with the correct WORDS, which have a lot of POWER, you can get a lot of places in life.

I teach and this is what I teach the kids, (Mostly teenagers) To empower themselves and I am not the greatest with words. But If I can just do it and let the fear go and make sure I get what I need, via want across then I will get my needs meet, In a healthy way..

This was GOOD, A Good Chat. Keep it up. I'll Be back,

disillusioned2014

[allmymarbles]

A very wise approach on your part. Some people are intimidated by doctors, which starts them on the wrong foot.

[allmymarbles]

And if you get still more disillusioned, give a reputable alternative MD a try.

[kwarendorf]

"What does one say when they ask you these questions?"

Answer them :-) I do not mean that you should withhold information, just that you respond honestly to questions rather than volunteering a lot of information up front.

If you present yourself by listing all of the issues you face, before the doc has a chance to ask any questions, you risk of providing them with a convenient way to get out of hearing you. "With all this stuff going on it must be psychological. Next..."

I do not know what information may be required at these alternate sites. You may get some help by contacting the Natl. MS Society chapter in Minneapolis.

Minneapolis office
200 12th Ave. S.
Minneapolis, MN 55415

Phone
612-335-7900
800-582-5296

Kyle