Author Topic: Mayo Update  (Read 18195 times)

navydad

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Re: Mayo Update
« Reply #30 on: May 13, 2010, 03:04:20 PM »
I guess I should start with Wednesday,, I had 18 tubes of blood taken, full body scan,  EMG, a couple of autonomic test,, Qsart and another I dont recall,,, and I am sure I am missing a few in there,
  Last night we got a call that they wanted more blood,, so in between appoitments today which was a MRI,, Fat aspiriration,, (fat cells taken from stomach),, I had to give some more blood,, then it was a sweat test, get covered with poweder and stick you ina  hot booth to see where you sweat,, my hands and feet arent sweating,,
 Tomorrow we see the eye doctors for a two hour eye test, then we meet with the neuros,, and possibiliy with a Rheummy,, I mighthave mentioned that the neuro thinks I should nothave been treated with rituxin unless there was overwhelming evidence of a small fibere neuropathy,, but I had to sign a release for them to send up the slides from the sural nerve biopsy,, they want me to have another lip biopsy,,, but not as extensive as one might get,, just a few cells,,,
 My weight is down to 135 lb,, down from 160 just over a year ago,,, so I am praying that they find out why that is,, they also want the biopsy lsides from teh punch biopsy,, one thing I had to think about was something the neuro said,, that the place where they took the punch biopsy was taken might have been taken from a damaged area,, like a old wound or something ,, I know better,, my legs are always cold,,, So when we meet with them tomorrow,, I will repeat what i have said here,,,
 My wife has ben a trooper,, going to Mayo daily,, dragging me to appoitments,, and still laughing at me for giving some women at a rest stop 40 bucks ,, she had a baby and was crying that she could not get her keys and purse out of her car and needed money for a key guy,,, I gave her my number,, and address,, but my wife thinks i;ll never see the money

Scottietottie

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Re: Mayo Update
« Reply #31 on: May 13, 2010, 04:31:56 PM »
Hi Navydad  :)

I'm so glad that docs are eventually paying you the attention they should have a long time ago and I hope they can resolve some of the issues you are having. I guess realistically, they're not going to cure you - but maybe they can alleviate some stuff and at least tell you what you're dealing with.

Please make sure they investigate your GI issues because they really need to be resolved as well as everything else. From recent posts it sounds like you could be poisoning your own insides and getting some motility going should be a priority.

Take care and good luck!!   Scottie  :)
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Joy Cox

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Re: Mayo Update
« Reply #32 on: May 13, 2010, 04:40:54 PM »
Best wishes tomorrow when you get the 'round table' discussion of results... Hang in there both of you!!! Troopers, you surely are!!! :)

Ohiocat

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Re: Mayo Update
« Reply #33 on: May 13, 2010, 04:42:04 PM »
and still laughing at me for giving some women at a rest stop 40 bucks ,, she had a baby and was crying that she could not get her keys and purse out of her car and needed money for a key guy,,, I gave her my number,, and address,, but my wife thinks i;ll never see the money


Really sweet of you to help someone else, when you are having such a rough time.   It speaks very well about what you are really made of 8)
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inga

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Re: Mayo Update
« Reply #34 on: May 13, 2010, 04:50:15 PM »
Hang in there!!  Did you get any good thunderstorms??

YYC_ Mommy

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Re: Mayo Update
« Reply #35 on: May 13, 2010, 05:54:10 PM »
Wow, sounds like they are leaving no stone unturned for you! What a nice gesture on your part to help the person in need. Thanks for sharing your update with us and I know that we are al waiting to hear more as you learn more.

NavyDad, wishing you loads of luck as you continue on this journey of yours!

navydad

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Re: Mayo Update
« Reply #36 on: May 13, 2010, 06:43:11 PM »
Hang in there!!  Did you get any good thunderstorms??
No,,, we got a lot of rain,, but no thunderstorms,, its finnaly clearing up now,, we took a drive this evening,, we almost drove to St. Paul,, then we got lost on the way back to the motel,, but everything is laid out well,, not like pittsburgh and we found our way back,, and I am hoping that tomorrow brings some answers,, and yes I know that things cant be the way they used to be,, but maybe we will get some answers,, god, bad or ugly,, or nothing at all,, if they cant find anything here,, then theres nothing else to do,, except live with   it

genko_b

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Re: Mayo Update
« Reply #37 on: May 13, 2010, 07:15:02 PM »
We are all so happy to hear how hard Mayo is working to find whatever they can about your situation. Just to know everything has been looked at will give you some peace of mind, but no doubt they will find some things they can tweek to make you feel better as well. We are all rooting for you.

Genko

Hkay66

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Re: Mayo Update
« Reply #38 on: May 13, 2010, 08:33:13 PM »
So glad to see you are at Mayos!!!  Hope you get lots of answers,
sounds like they are testing it all.
My thoughts are with you - good luck!!!

irish

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Re: Mayo Update
« Reply #39 on: May 14, 2010, 08:25:44 AM »
navydad, Still waiting and praying for some good news from you. Hopefully they find something to do to help you feel better.

Just wanted to tell you that if you are going to be around over the weekend there are some nice scenic country down to the south. Stick to the state or country roads where there is farmland and hills and bluffs rising up where you wouldn't expect them. Down in the hills and valleys around Winona and that area is where they do a lot of turkey hunting. There are also rattle snakes around those bluffs. Also streams for tourt fishing.

There is a lot that Minnesota doesn't have but there can be some awesome scenery especially in the fall when the crops are getting ripe. Rochester is also an expensive town to live in. I'm sure you must have spent time in the tunnel system between the hospitals and clinic and other buildings. I spent a lot of hours walking back and forth between nursing classes and the hospital for the 3 years I was in nurses training. Come back now and parts of the tunnel have not changed at all. Good luck. Irish ;D

navydad

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Re: Mayo Update
« Reply #40 on: May 14, 2010, 02:36:46 PM »
I had my eye exam today,, there doctors were very good,, and after teh exam,, they told me my eyes werent as dry as some Sjogrons patients they see,, then we saw the neuros,, everyting that cmae back has been normal,, no antibodies yet showing up,,, and everything else in the pretty normal range,, other then cortisol,, there is some concern about some lytic lesions on some bones,, so they scheduled me a cortisol test which we got done today along with a PET scan,, and some more blood work, we thought we would be leaving today,, but we have to stay until we have that consult with a rheummie,, but everything is looking good,, they are a bit ticked about me being treated with rituxin,, says that is not a benign drug,, and should be used sparingly,,,, so we;ll see,,, makes me almost think I dnt have SS,, its crazy,, but there is evidence of SFN,, and they may start calling it idiopathic,, so I guess were stuck here for the weekend,, and at least till late monday,, that is if we can get in to see the rheummy

magistramarla

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Re: Mayo Update
« Reply #41 on: May 14, 2010, 03:32:11 PM »
Hi Navydad,
  You're making progress!  I'm so glad!
I've seen you mention SFN before.  What is it?  When I google it, nothing medical comes up. 
Maybe they will get you started on the RIGHT medications soon, and get you to feeling better.
Meanwhile, enjoy your weekend.
Hugs,
Marla

Carolina

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Re: Mayo Update
« Reply #42 on: May 14, 2010, 05:43:55 PM »
SFN = Small Fiber Neuropathy

Hope this helps.

Carolina
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Joe S.

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Re: Mayo Update
« Reply #43 on: May 14, 2010, 06:55:15 PM »
Enjoy the sunny weekend. Maybe you could get a fishing license and spend some time getting a line wet?
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Tinker

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Re: Mayo Update
« Reply #44 on: May 14, 2010, 07:46:45 PM »
Navy Dad,
I posted to you early this am but it didn't compute.  Just wanted to send my best wishes and tell you I hope they figure out what is wrong with you. It sounds like Mayo is doing everything to solve this puzzle.  Keep us posted and know that we all pray that you will have some answers and treatment to heal you.