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3 weeks at Mayo

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Unread 08-14-2014, 07:21 PM   #1
msarkie
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Angry 3 weeks at Mayo

Believe it or not, I was able to self-refer to Mayo and get an appt in just over a month! I flew up here to Rochester on June 29th and have been here seeing docs and having tests ever since.

The internal medicine dr I saw at the beginning was fabulous - he spent 2 hours with me going over every symptom I had, and set up appts with specialists for me. He asked if I wanted to see a regular neuro or try to get in to see the MS specialist, and I opted for the MS specialist. Now I'm cursing myself for an idiot.

Are we allowed to name names? The MS specialist I saw is supposed to be all that and a cherry on top, but he was cold, dismissive, condescending, and insinuated that I was just trying to play the system for disability benefits. He spent maybe 15-20 minutes with me, with incomplete records, no MRIs more recent than 2011, and a half-hearted neurological exam, and then proceeded to inform me that I have no neurological disorders AT ALL. Not MS, and not anything else either.

I tried to talk logically with him at first, but I could soon see that his mind was already made up. I didn't fit into his neat little box of what MS was supposed to look like, therefore I could not possibly have MS. And the instant he heard I was on disability, he stopped listening to a word I said. You could just literally see the switch flip.

What really made me furious was that he had no suggestions for other diagnoses or further tests, he just dismissed me completely - and then told me that he never felt bad about telling someone that they didn't have a neurological disorder. Well, yay for him! I guess I must be cured now!

So basically the hundreds of thousands of dollars spent over the last 9 years, all the MRIs, the spinal tap, the injections, the 25 different rxs - I guess that's just all in my head! I very nearly lost the fragile grip I had on my temper, and he will probably never know how close he came to being strangled with his stethescope.
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Unread 08-14-2014, 09:27 PM   #2
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Ugh.. I really hate doctors like that, even if one isn't on disability, they seem to have their own ideas that have nothing to do with the patient in front of them from what I can see.

The very first neuro I saw was completely dismissive, suggested diabetes (not a diabetic, blood sugars and urine had been tested... I average lower rather than higher, remarkable for all the sugar I eat ) yeah was completely unhappy about it, and seeing red when I paid the bill. No insurance at the time so it was out of pocket.

$500.00 I'll never see again and five years of guessing I'll never regain, even though my current neuro saw lesions in the same MRI that the previous one was perfectly fine.

I really hope you have better luck with another doctor, some of them do need to (censoring-- Please wait:----)

And....
(censoring-- Please wait:----)

Or should just
(censoring-- Please wait:----)

There are still a number of good doctors out there, but the bad ones make them seem so much more rare.
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Unread 08-14-2014, 09:50 PM   #3
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I am so sorry you ended up with so much frustration. I understand how you feel. My neuro, we are part of a small hospital system, only half listens to my symptoms after my MRI results back in March. He is so involved in ruling out MS than trying to figure out what is wrong with me. Now, he has referred me to the local MS specialist with UF Health-Shands for a second opinion to rule out MS...so I guess I will soon be back at square one and just as frustrated.

I have considered Mayo in Jacksonville, FL...My cousin travels from Oklahoma back home to Maryland for MS specialist appointments at Johns Hopkins. There are options, it is just finding the best option for you. We are all kind of in this together. I know I feel lost and anxious much of the time, so I now just try to look at it as though I have dealt with this all this time on my own what difference does it matter now. Life is just too short to stress over it, unless my vision is so blurry and everything I am looking at is doubled...lol...so I just try to smile at everything.
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Unread 08-15-2014, 10:30 AM   #4
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And Another jerk Neuro bit the dust. These rare jerk Neuros must be very unhappy
and unfulfilled individuals. Little Neros (pardon the pun), with their hands in their
little vests.

Can you ask the Mayo to refer you to a REAL Neuro, for a 2nd opinion?

(((((Msarkie)))))
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Unread 08-15-2014, 10:54 AM   #5
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now that hits one of my all time pet peeves. urrrrr!

i would get back in touch with your initial dr at mayo who did your intake.
tell him exactly what you told us and see if anything happens. tell him what you want, which is to see the other neuro dr. and see what comes of it. if that's what you want.

there is a thing called the MacDonald Criteria that drs follow when putting together a dx of MS. you might look it up to gain some insight.

what happened to you makes me so mad that i would also write a letter saying just what you told us to whoever is the head honcho up there.

keep us posted.
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Unread 08-15-2014, 12:32 PM   #6
msarkie
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I have to go home tomorrow, my family can't stand to be without me another day apparently! I have a video conference appt with the original dr on Wed and I will definitely be letting him know. I also deadpanned it into every other drs appt I had - you know, like, "Well, I really need your expertise since the MS specialist says I have no neurological disorders AT ALL, so maybe my symptoms are something in your field," when my primary symptoms are so obviously neurological that all the other docs were left scratching their heads and trying to keep a straight face.

I'm thinking I may make another trip up here in the future, depending on what the MRIs I had yesterday turn up I guess. I was not able to get into the Spine Center, which I desperately need as I've had back problems since I was 13. Maybe in 6 months or a year, I'll come back for that, and see a different neuro.

Pretty much all the other drs were great. The rheumatologist was wonderful, and the "women's health" counselor was fantastic! The rheumo started me on Plaquenel which may help with some of my other symptoms if I'm lucky.

I don't know what it is about neuros, but they seem more prone to having a God complex than most other specialists for some reason. My DH speculated that they don't like to dx MS because they can't really do anything for it. And I'm guessing there's no money in it. I know the guy that hacked me off has a research grant to study something that affects the optic nerves other than MS, so I guess I didn't fit his research parameters.
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Unread 08-15-2014, 04:27 PM   #7
NurseNancy
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i'm glad you'll have a chance to talk to the other dr.
be sure to get their reports in writing and get copies of the test results/mri's.

you may not be able to get them before you return home so you may have to sign a release and they can mail it.

let us know. you're a smart cookie.
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Unread 08-17-2014, 01:17 AM   #8
msarkie
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Well, well, well - I got the MRI reports on my online acct and they show "demyelinating disease consistent with MS" and "a possible new lesion at T4" which was just at the edge of the scan of the c-spine, and just so happens to be the EXACT area where I'm having all this freakin' pain! So there, MS specialist! Pbbththt! I wish they had gone ahead and imaged the thoracic area too.

I feel vindicated. I'll be interested to see what the internal medicine dr has to say.
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Unread 08-17-2014, 09:39 AM   #9
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What a jerk!?! Sorry you had to deal with that. He must have slept through the bedside manner courses. How on earth do they call him an MS specialist?
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Unread 08-17-2014, 11:20 AM   #10
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WooHoo!!! and I'm sorry.

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