Author Topic: Mayo Update  (Read 18193 times)


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Mayo Update
« on: May 11, 2010, 07:09:43 PM »
We left Pa, on saturday and made Indiana our first stop to stay with friends for two days,,, We had a nice visit but the neuropathy got to me pretty good,, Monday we left for Mayo,, I was impressed at the beauty of Wisconsin and the parts of Minnesota we drove through to get here
  Today we met with a nice lady Neuro who did a extensive background on me and a very good Neuro Exam,, she opened my eyes to some facts,, that IVIG and Rituxin should only be used whenit is evident and with overwhelming support from testing that small fiber neuropathy has been well established,, not that she doesnt belive I have it,, but only told me that,
 She has ordered a lot of testing,, Qsart,, Sweat testing,, salivary gland testing,, eye testing,, abdominal fat biopsy,, eye exams, rheummy consult,, blood work,, urine testing, MRI;s ,, bone scans,, and I am sure a few I have missed,
 Mayo is quite the place,, very huge with very very friendly people,, and the other people we have met are very pleasent also,, its like everyone was cut from the same mold, and then hte mold was broken,, not like Pittsburgh thats for sure,, if it didnt get so cold up here it might be anice place to live,,
  I dontknow what will become of this journey,, I hope it will settle some things,, buti f it doesnt,, it wont matter,, we came to be seen at a plce that is suposed to be one of tehbest in teh world, and i will have to accept what they find if anything,,
  We willl be here at least till Friday,, with test scheduled from 6 inteh morning tolate afternoon the next two days,, we meet withteh neuro again on Friday to go over some test results,, shehas ordered the slides of my lip biopsy and surral nerve biopsy to be sent up here to be looked at,, and is looking to see if its possible to get another lip biopsy while I am here,, she said it wont be as extensiveas teh one I got in Pittsburgh,, but enough to show any imflamtion,,
  All in all,, we are trying to find answers to questions that mnight not have answers,, if the almost 900 mile trip comes to noanswers,, at least my wife and I got away for a week,, and hopefully if teh neuropathy doesnt get any worse,, we can try to enjoy more of what life my limbs have left in them,,
I asked the Neuro if my sensory symptoms sounded like i was crazy,, she assured me that I am not crazy,, and she said she wasent quite buying into teh fibro thing,, she pressed on pressure points and I felt nothing,, only the sensory stuff that is bothering me,, oh,, she did schedule another EMG,,, WHY?,, I have no idea,,, and I dontknow why she doesnt order some other punch biopsys,, its not like its that big of a deal,,,
 Will fill you all in tomorrow or thursday as to how things are going,,, thank you all for your love and support,,,, I have seen some very sick people coming to aplace that is known for healing,, its sad,, so many people looking for that one chance at getting alife back,, I heard peole talking about there loved ones with a terminal illness,, and hoping that the doctors at Mayo can give these people something to grab hold of,, life for aloved one,,


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Re: Mayo Update
« Reply #1 on: May 11, 2010, 07:16:51 PM »
Sending you tons of gentle giant soft hugs my friend and I sure hope that the doctors can finally help you...

Take care of yourself now, and am waiting your update -

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Re: Mayo Update
« Reply #2 on: May 11, 2010, 07:19:02 PM »
  I had tears in my eyes when I read your post - I've been watching for it today.  Finally, you sound like you have some hope!  It's so good to hear that from you!
It sounds like you are finally on the right track.  Hang in there, and keep us informed of what the findings are.
Oh, and I hope that you and your wife enjoy your little medical getaway vacation.  We had one of those in San Francisco - it was fun!
Gentle Hugs,


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Re: Mayo Update
« Reply #3 on: May 11, 2010, 07:20:32 PM »
Wow, sounds like you are going to get worked over from top to bottom.  I am so glad that you find the place a good one and that the people are nice.  That helps alleviate some of the anxiety associated with this whole situation.  I am hoping that they can get to the bottom of things and have several answers for you and thoughts on how that want to proceed with the issues that you are having.

Good luck this week and can't wait to hear your next update.  Hang in there.


Joy Cox

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Re: Mayo Update
« Reply #4 on: May 11, 2010, 07:28:06 PM »
Navydad, You sure are lighting up the post board here at Sjoggie World!!! ;D

Years ago I made a long drive to John Hopkins to seek help for my eyes as you are now doing.  Best of luck!!!!!!!!

 Hang in there... you have this whole bunch pulling for you!!!! ;)


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Re: Mayo Update
« Reply #5 on: May 11, 2010, 07:46:57 PM »
Me too Navydad.

Last week your post made me cry.  You seemed to be so down. This post made me cry too, but in a different way.  You are certainly more up and I hope you get some answers.

You did very well to drive all that way. Don't think I could do that.

All the best!


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Re: Mayo Update
« Reply #6 on: May 11, 2010, 08:01:51 PM »
Dearest Navydad,

So good to hear from you, and that you're getting the attention you deserve.

Keep us posted.

Love, Carolina

hmmm, even this very non crying person, seems to have some tears in her eyes!

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Re: Mayo Update
« Reply #7 on: May 11, 2010, 08:18:49 PM »
Navydad, so glad that you are hopefully getting some help!!! :)  I know that the tests are long and tiring, but you made it there and you will make it through the tests too!!!  Make time to enjoy the surroundings with your wife and try to make the best of it!!!  I am so happy for you and make sure you keep us updated on your progress!!  Take care.....Mary
« Last Edit: May 11, 2010, 09:44:41 PM by sleeeepy »


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Re: Mayo Update
« Reply #8 on: May 11, 2010, 09:02:41 PM »
I am glad they seem to be taking good care of you. And - even better - you sound more upbeat and hopeful. Yay for that. :)


YYC_ Mommy

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Re: Mayo Update
« Reply #9 on: May 11, 2010, 09:43:14 PM »
NavyDad, so glad that you are there and that you have met a wonderful doctor. My hope is that she is able to help you with your pain. Please do keep us posted as we are all pulling for you!

Sending much love and support your way  ;)


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Re: Mayo Update
« Reply #10 on: May 11, 2010, 10:37:25 PM »
Thank you so much for keeping us all in the loop - we are all pulling for you to get some answers. It feels good to hear hope in your voice.



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Re: Mayo Update
« Reply #11 on: May 12, 2010, 01:22:05 AM »
So glad to hear you arrived safely and are getting lots of care and thorough attention.  Hoping that the nest few days are not too exhausting and that by Friday you have some answers and some hope back for you and your wife.  Thinking of you both XX Ailsa
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Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.


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Re: Mayo Update
« Reply #12 on: May 12, 2010, 03:14:44 AM »
Im so happy to hear about your journey!!  I am definitely praying for you!!


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Re: Mayo Update
« Reply #13 on: May 12, 2010, 03:29:01 AM »
Navydad I am so happy you have made it there. I too am hoping you get more answers to help you. You deserve it. Yes, when you can, you and your wife enjoy the sites out there. Hang in there, and relax when you can. Everyone is thinking of you. Hello to your wife also.

susanep :)
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Re: Mayo Update
« Reply #14 on: May 12, 2010, 04:42:14 AM »
Navydad, I havent posted on here in a very long time. I shared with you the reason why.  Reading your post I just had to let you know that I have been praying for you all along as well as many others on this site.  Praying for hope for all of us...maybe it can begin with you. You have been so transparent in a world that is so fake.  Though we have never met many of us feel we know you very well.
Oh how I pray for answers, relief and healing for you so you can be the man you long to be.
Please do let us know what all you learn. I am on the very drugs you are on and can relate to so much of your pain and the depression and at times such hopelessness.  But no more!  Hoping for a new beginnning for you and all of us:)
Cant wait to hear from you.