Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: navydad on May 11, 2010, 07:09:43 PM

Title: Mayo Update
Post by: navydad 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,,
Title: Re: Mayo Update
Post by: Patze 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 -

Title: Re: Mayo Update
Post by: magistramarla 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,
Title: Re: Mayo Update
Post by: baileybugster 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.

Title: Re: Mayo Update
Post by: Joy Cox 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!!!! ;)
Title: Re: Mayo Update
Post by: ros 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!
Title: Re: Mayo Update
Post by: Carolina 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!

Title: Re: Mayo Update
Post by: sleeeepy 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
Title: Re: Mayo Update
Post by: Suzy 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. :)

Title: Re: Mayo Update
Post by: YYC_ Mommy 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  ;)
Title: Re: Mayo Update
Post by: genko_b 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.

Title: Re: Mayo Update
Post by: harrigan 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
Title: Re: Mayo Update
Post by: shevonne on May 12, 2010, 03:14:44 AM
Im so happy to hear about your journey!!  I am definitely praying for you!!
Title: Re: Mayo Update
Post by: susanep 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 :)
Title: Re: Mayo Update
Post by: faithful 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.
Title: Re: Mayo Update
Post by: jstroble on May 12, 2010, 06:52:57 AM
Count  me in as one of those rooting for you too.  I am so hoping that you can get some answers. 

Hugs to you and your wife. 

Title: Re: Mayo Update
Post by: Bucky on May 12, 2010, 07:11:23 AM
Navydad . . . glad to read your post and know that you are in the hands of the wonderful people at Mayo Clinic for the next several days.

The people at Mayo might be happy to have a male "specimen" with Sjogren's - since, as you know, the vast majority of people with Sjogren's are female.  Believe it or not, we are wired differently.  LOL   ::)  I do hope that you can be as descriptive as you can be when you describe the aches and pains you have been dealing with.   Guys tend to downplay their pain.  Although, from reading your posts these past few years, I think you will do just fine letting them know how it feels.   ;)

Do try and get out and see some of MN while you are there.  Just a word of caution . . . Minnesota's state bird is the mosquito!!   :o   ::)

Keep us updated when you get a chance.  Wishing you all the best.

Title: Re: Mayo Update
Post by: Cricket on May 12, 2010, 08:14:14 AM
I am so glad to hear that you made it to Mayo, I pray that they will be able to give you some answers and some treatment to ease your pain.

Just remember you are not on this journey alone, we are all with you in spirit. 
Stay strong
Title: Re: Mayo Update
Post by: sugarbugar on May 12, 2010, 08:54:00 AM

I am so happy you're there and I pray they have answers!  You sound optimistic and that's great!  I hope and pray you and your wife can enjoy your time some out there!  Can't wait to hear your updated posts on this journey and pray it's with good news and a chance to get some life back! 
Title: Re: Mayo Update
Post by: Dolly Dimples on May 12, 2010, 02:49:43 PM
  Navy Dad, so pleased to read your post today,

                    It sounds a great place to be when one is so sick.

                     Your post sounded more positive today, and I'll be praying that you will be more so as the days go on.

                       Lovely to hear that your dear wife managed to get away with you too.

                       All  of us here are with you in spirit and prayers  each day.     Bless you, Dolly 
Title: Re: Mayo Update
Post by: Joe S. on May 12, 2010, 03:05:08 PM
enjoy the cold damp wile you are here.
Title: Re: Mayo Update
Post by: jaygee on May 12, 2010, 03:10:48 PM
I really hope you can get some answers, navydad.  You are with the experts.  God bless.  xx
Title: Re: Mayo Update
Post by: navydad on May 12, 2010, 03:14:28 PM
enjoy the cold damp wile you are here.
It is definately cold and damp,, its drivingme cray,,,
Title: Re: Mayo Update
Post by: navydad on May 12, 2010, 03:16:28 PM
Will give update on today later on,, it was exhausting,, my wife dragging me to all the apoitments,, but this place is amazing,, and the equipemtn they have is light years ahead of anything probably any of us have ever seen,, but i;ll post later on what happened today
Title: Re: Mayo Update
Post by: irish on May 12, 2010, 03:16:37 PM
navydad, I just got back on line after another computer glitch. I am thrilled that you got to go to Mayos. If nothing else the trip was a good get a way for you and your wife.

I am like all the rest here. Praying and waiting for some news from you and hopefully a chance for some treatment to help you feel better. Irish ;D

P.S. I live in Minnesota not far from Mayos and it is beautiful country---and yes, it can get cold here!!!! But you should have seen how cold it got back in the late 70's-early 80's. This is wimpy weather these past winters.
Title: Re: Mayo Update
Post by: harlin on May 12, 2010, 05:04:07 PM
We are all so happy that you are finally in a place that hopefully can help you with some answers. I think we are all watching and waiting so maybe we can get some answers too.
We are all praying for you to make it thru the battery of tests that you have to endure.
Best wishes to you and your wife.
We are all sending many hugs to you. Hang in there. It will be worth it!

Title: Re: Mayo Update
Post by: BonusMom on May 13, 2010, 05:49:28 AM
I am hopeful that you will finally get some answers and solutions for your health issues, navydad.  It's the unknown that makes us crazy!
Title: Re: Mayo Update
Post by: bjnc on May 13, 2010, 06:59:23 AM

Just letting you know that I, too, am praying for you and thinking about you, with great hopes that you will come away with some answers and good treatment plan.

Title: Re: Mayo Update
Post by: Carolina on May 13, 2010, 07:20:37 AM
Dearest Navydad,

Log on every morning, thinking of you and hoping for some news from you.

This is so exhausting for you...................

We are all in your corner, and prayers and love go out to you from all sides.

We start our trip East today, but there is supposed to be wireless at every hotel, so I'll be looking for news every day.

All love and kisses,

Title: Re: Mayo Update
Post by: bloodless on May 13, 2010, 09:09:27 AM
I'm glad they are treating you well. I am so looking forward to hearing your results. Crossing my fingers. Stay warm.
Title: Re: Mayo Update
Post by: navydad 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
Title: Re: Mayo Update
Post by: Scottietottie 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  :)
Title: Re: Mayo Update
Post by: Joy Cox 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!!! :)
Title: Re: Mayo Update
Post by: Ohiocat 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)
Title: Re: Mayo Update
Post by: inga on May 13, 2010, 04:50:15 PM
Hang in there!!  Did you get any good thunderstorms??
Title: Re: Mayo Update
Post by: YYC_ Mommy 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!
Title: Re: Mayo Update
Post by: navydad 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
Title: Re: Mayo Update
Post by: genko_b 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.

Title: Re: Mayo Update
Post by: Hkay66 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!!!
Title: Re: Mayo Update
Post by: irish 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
Title: Re: Mayo Update
Post by: navydad 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
Title: Re: Mayo Update
Post by: magistramarla 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.
Title: Re: Mayo Update
Post by: Carolina on May 14, 2010, 05:43:55 PM
SFN = Small Fiber Neuropathy

Hope this helps.

Title: Re: Mayo Update
Post by: Joe S. 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?
Title: Re: Mayo Update
Post by: Tinker 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.       
Title: Re: Mayo Update
Post by: Epson on May 14, 2010, 09:48:02 PM
Navy Dad,

You have me hanging on to the edge of my seat, I want to hear the ending, make it a happy one dude.
Title: Re: Mayo Update
Post by: anita on May 15, 2010, 04:41:36 AM
Glad things are moving along Navydad.  It's a great place.  Very organized.

I was (and a believe several others here also mentioned) worried about the use of Rituxin without any specific positive test indicating it's use.  Same goes for the IVIG.  These meds are big guns and should only be used when documentation indicates.  I remember my trip to Mayo (years ago) had them writing a letter to my doctor saying the IVIG I was getting wasn't often enough.  Go figure.  Yes, they said that IVIG is typically given every 4 weeks, even when most doctors know the half-life of antibodies is only 21 days (three weeks).  Therefore Mayo recommended I get it every 3 weeks...I had better results.

Anyway, maybe they will be able to put the pieces together for you early next week.  And by the way, staying extra days ALWAYS happens.  I was told 5-7 at max and it was a full 10 days in the end.  So take it easy and recover from your long week.

Best to you,

Title: Re: Mayo Update
Post by: gurs on May 15, 2010, 04:41:45 AM

I would mention to them about Porphyria also if nothing else shows no doctor, but you have alot of those symptoms..I know you
have been tested for Lymes.

Good luck sweetie..hope they find something they can FIX.....and you will be all better.
Title: Re: Mayo Update
Post by: Patze on May 15, 2010, 04:52:34 AM
Keeping my fingers, legs, toes and eyes crossed too!  Is it true that if you keep your eyes crossed for a long time, that they stay that way?? ;) ;D

Good luck my friend!

Title: Re: Mayo Update
Post by: BonusMom on May 15, 2010, 08:46:56 AM
Since Epson's trip to Mayo, I've been really impressed with everything I've heard about their staff and facility.  It appears that they listen and take their patients' complaints seriously and are committed to making a dx for you so you can get on a path to wellness.

SjS, SFN, PITA (hemmorhoids), whatever it is Navydad, it doesn't mean you don't belong here at Sjogren's World any longer. We care about you and the journey you're on.

It's been a long, hard road that's led you to Mayo and you'll be enroute home in a couple days feeling better than you've felt in years because you'll finally know the root of your health problems. Stay strong!  We're all rooting for you!
Title: Re: Mayo Update
Post by: navydad on May 15, 2010, 08:02:55 PM
Thank you, all of you for your heartfelt comments,, this trip has been a long time coming,, and some of the stuff teh doctors are telling me,, well I just dont agree with,, they cant explain the numbness and loss of feeling in my hands and fingers other then to say its looking like idiopathic neuropathy,, but they havent ruled out a autoimmune cause, that is why we have to see teh rheummy this coming week,,
  My wife and I have been here almost a week now, and were doing ok ,, we have been eating out every evening,, no fast food,, but sit down dinners and my guts have been behaving pretty good for the most part,, mornings are still pretty bad,, until I get somemeds in me,
  Today I felt good enough to tell my wife were going to get in the car and go spend alittle money at a casino I found on line near Red Wing,, I love this area,, the country is very beautiful,, and if it didnt get so cold up here I would consider just chucking it all and have me my wife and my doxie live up here,
 Tomrrow I am thinking of going to the bluff area near here to take in sights and take some pictures,, I am feeling alot more relaxed, my blood pressure is really down, and I just seem to feel a lot less stressed,, just getting here and getting a good look over has been good,, even if they never find the root cause of my neuropathy and other problems,, thats ok,, at least I know I;mnot going to flopover dead,, at least not right now,, again,, who knows what teh rheummy is going to say or want done,, but it will be another piece of the puzzle,, I saw a post somewehre about a husband wanting to take his wife to mayo about her neuropathy,, by all means get up here,, there neuro dept is rated best in teh country,, and teh test they do ,, well some are only done here and no where else in teh country,, you WILL get proper care,, the staff and people are wonderfull,, and they truely care about the patient,, not the bottom line,,
 I;ll post tomorrow about our day, its supposed to be nice and I intend on seeing as much of this area as possible,, I dont suspect i;ll ever be up here again unless I decide to retire up here
 I LOVE ALL OF YOU,,, I really do,, your all so caring and loving
Title: Re: Mayo Update
Post by: JannaLee on May 15, 2010, 11:50:39 PM
Well, I could barely read your post Navy, cause my eyes were teary with happiness hearing how wonderful you sound. 

Enjoy this lovely trip with your wife my friend and also a bit of newfound peace of mind!

Title: Re: Mayo Update
Post by: harrigan on May 16, 2010, 12:49:12 AM
Navydad - so lovely to hear your news.  Sounds like you,ve got your spark back! Enjoy all the bits you can and hope you see the rheumy soon XX Ailsa
Title: Re: Mayo Update
Post by: voiceteacher on May 16, 2010, 04:43:51 AM
Navydad - you sound GREAT - - I do hope you get some answers but like you said, just having them really look you over is comforting.  Keep us posted tomorrow!!  Good luck :)

Title: Re: Mayo Update
Post by: Patze on May 16, 2010, 05:23:40 AM
Aw Navydad, I'm so glad that you're spirits are up, and I've always believed that that's half the battle.

Take lots of pictures, and enjoy the sights!

Title: Re: Mayo Update
Post by: harlin on May 16, 2010, 12:23:49 PM
Navydad I was so anxious to get home from church and read your post. It sounds like you are very happy with everything Mayo has done for you. Your spirit seems so much higher than  your last post. I am so happy for you. Please let us know after your rheumy visit tomorrow. We will be waiting patiently for your post.
So happy for you, wish I could give you a personal hug. Just know we are all there with you!!
Hugs and love harlin
Title: Re: Mayo Update
Post by: Dolly Dimples on May 16, 2010, 12:50:00 PM
 Wow, You sound soooo relaxed right now Navy Dad,

                                It is so good to hear you being a little more positive!

                               It sounds like heaven where you are. I am in the UK ,

                                          so there must be a few thousand miles between me and that heaven,

                                      Lap it up Navy Dad, and hope you get home in better shape than you went,
                                                                              Best Wishes, Dolly
Title: Re: Mayo Update
Post by: Carolina on May 16, 2010, 02:37:51 PM
Dear Navydad,

So glad you're doing some of the fun things, and enjoying the countryside!

And I agree, even if they don't all the answers, they are surely ruling out the horrible possibilities!

I know that helps me.



Title: Re: Mayo Update
Post by: Bucky on May 16, 2010, 05:16:45 PM
Navydad . . . . thanks for the update.  You sound like a new man since seeing the doctors at Mayo Clinic.  I'm so glad that this has been a journey that gives you hope.  Just to know your symptoms are being validated has got to make you feel good.  These doctors and staff really do care.

Too bad time and distance doesn't allow our MN members to have a meet-and-greet with you while you're in town.   I know Irish and JannaLee are from MN as are some others.

I hope you have enjoyed your weekend doing some sightseeing.

Best wishes to you Navydad.

Title: Re: Mayo Update
Post by: inga on May 16, 2010, 05:37:47 PM
Hey Navydad.....

Yes, it is beautiful this time of year.....but half the year.....Hope you are enjoying your trip.
Title: Re: Mayo Update
Post by: Cricket on May 16, 2010, 05:42:48 PM

So very glad to your spirits are brighter.  So glad you went to Mayo, I have been there with my Mom years ago and it was an impressive place, I am sure it is even better now with all the new technology.  Glad to hear you are taking time to enjoy yourself also.  Looking forward to your posts.

Title: Re: Mayo Update
Post by: genko_b on May 16, 2010, 08:01:27 PM
We are all sitting on the edge of our chairs waiting to hear what the rheumatologist says on Monday. You are finally getting the attention you deserve. It is so wonderful to hear you feeling better about life, I can't tell you how happy it makes me.

Title: Re: Mayo Update
Post by: lori on May 17, 2010, 04:15:30 AM
praying praying!!!!

read your last post- so glad you sound so much more upbeat- chronic stuff can get ya down into a pit but everything is much better- physically and mentally when there is some hope and sunshine in our life.

keep us posted!!!

Title: Re: Mayo Update
Post by: YYC_ Mommy on May 17, 2010, 07:28:30 AM
Thinking of you today and hoping that things go well. Looking forward to hearing how you make out.

Title: Re: Mayo Update
Post by: Billydude on May 17, 2010, 07:35:45 AM
Best of luck to you.    Before you decide to retire there spend a winter first.   It might change your mind.
Title: Re: Mayo Update
Post by: navydad on May 17, 2010, 08:43:58 AM
I wish I could have met a couple of the others from MN too while I am here,, I am down a bit today,, the neuropathy is kicking in a bit and my skin feels like its crawling,, and your right,, at least alot of the horrible stuff has been ruled out,, it should be for the amount of blood I have been giving,, I am just so tired all the time,,
  We went to Mayo this moring hoping we could get in to see the Rheummy before wed,, the earliest we can get in is tomorrow,, but we were able to set up a June appt for this afternoon,, they want another small lip biopsy,, so this afternoon were getting that done,, and after meeting with the rheummy,, were leaving unless they want something else done,, but I just think we have had a pretty good going over,, and they will send us home,, as for a treatment plan,, I have no idea,, we dont meet with the neuro dept again,, so I guess were just done and be on our way,,
 We had hoped not to be here that long,, but we wanted to make sure we got everything done that we had too,, were awaiting the results of teh PET scan and teh cortisol test,,, I dontknow what can be done if my cortisol levels are low all the time anyway,, just something else to add to teh mix,, I had mentioned to my doctors in Pa about teh cortisol levels being low,, but they never really looked into it,,, will check back in later after the lip biopsy,,, Love you all
Title: Re: Mayo Update
Post by: Scottietottie on May 17, 2010, 09:29:20 AM
Hi Navydad  :)

I'm so glad they've been treating you well and have been so thorough. I hope your meeting with the rheumy goes well. Please do tell me that they have taken notice of your gastric problems! What do they advise about them??

Take care - Scottie  :)
Title: Re: Mayo Update
Post by: jaygee on May 17, 2010, 09:31:31 AM
Hi - am so pleased to see that they are checking as many things as possible  ;D     I really hope you can get some answers, and so some relief from your symptoms, soon.   xx
Title: Re: Mayo Update
Post by: syng4hym on May 17, 2010, 09:37:06 AM
Keep your head up.  You've ruled out so many things that they thought you had and that's such a good thing.  They'll find it.  We know something is there, and I believe with my heart they'll find what it is.  Just be patient and let them do their thing.  I would LOVE to have this "going over".  Seems like everytime I go to the doc, they find something else. 

We're all here pulling for you so do what they want, stay till they're done, and when you get home, I'm sure they'll give you the results of everything.  Praying they find what it is that's bothering you. 
Title: Re: Mayo Update
Post by: Carolina on May 17, 2010, 10:49:20 AM
Wow, Navydad,

It's all so complicated.  Here I am with pretty garden variety stuff, and some days I wake up feeling pretty good and then drop like a stone four hours later with total exhaustion.

We decided to do a little walking the Mall (NOT power walking, just strolling) so I could practice using my feet properly.  Between the PN and my fused toes due to arthritis, I don't walk properly, adding to my instability. 

Well, we walked about a mile and a half, which is very very good.  Then I sat down and the sweat just DRIPPED off my hair, hitting my neck like freezing drops of rain.

And this was inside an air-conditioned Mall.

I cannot imagine what you go through given the level of your condition, and the variety of your afflictions.

Give yourself a LOT of credit for hanging in there day after day.

I sure do.



Title: Re: Mayo Update
Post by: Jules48cats on May 17, 2010, 11:36:58 AM
Hi Navydad,
I am glad to hear you are getting a good going over and I hope You get some useable information and a treatment plan that works for you.. We were away for the weekend so I just saw your posts today.  I will be hoping for the best for you and your wife and hope you have a safe and uneventful trip home.
Title: Re: Mayo Update
Post by: roetta on May 18, 2010, 11:23:28 AM
Navydad - I've been away from the boards for a few days, taking a break. But I am so so so glad to hear that you made it ok and are getting the attention that  you need.

I've heard nothing but positive things about the Mayo. And it sounds like they are definitely living up to their reputation with you.

Can't wait to hear more updates.
Title: Re: Mayo Update
Post by: sewandsew on May 18, 2010, 01:16:46 PM
I've been following your journey and hope they come up with a satisfying plan of action.  You give me hope!  Hang in there and give thx to your wife for being by your side..
Title: Re: Mayo Update
Post by: magistramarla on May 18, 2010, 04:27:42 PM
Hey Navydad,
  I'm watching every day for your updates.  It is sooo good to see you finally feeling more upbeat about what is going on with you.  I'm sure hoping that you get some good answers this week.
Title: Re: Mayo Update
Post by: Babs659 on May 18, 2010, 05:46:34 PM
Navydad, we all love you, too! :-*

No matter what you find out, I hope you know you belong here with us!  Wish we could all gather around and give you a group hug :)
Title: Re: Mayo Update
Post by: sleeeepy on May 18, 2010, 07:40:11 PM
NavyDad, so glad that you are keeping us updated on your Mayo progress.  We are all hoping and praying that you find some answers and peace of mind.  So happy that you and your wife are finding the time to enjoy yourselves!! Did you win any money at the Casino?!?!?!  ;D   Please know that you and your family are in our hearts and minds..take care my friend.............Mary
Title: Re: Mayo Update
Post by: syng4hym on May 19, 2010, 06:44:54 AM

It's time for another update.  Can you post how you're doing, how the lip biopsy went, and what the Rheumy said?   We're all checking in everyday for a word from you.  Let us know when you get a chance. 

Hoping the docs get to the bottom of this.

Title: Re: Mayo Update
Post by: kellyptyler on May 19, 2010, 10:47:47 AM
I too am waiting for the next update.
Title: Re: Mayo Update
Post by: genko_b on May 19, 2010, 02:06:24 PM
I believe they must be on their way home - it took two days driving to get there.

Title: Re: Mayo Update
Post by: ohiolady on May 19, 2010, 04:00:26 PM
Wishing you the very best!!!!!!!!  Keep us updated.

Title: Re: Mayo Update
Post by: mac on May 20, 2010, 06:15:11 AM
Hoping you got to meet with the Rheumy, were met with good news and a course of action plan, and you and your love have a safe, sunny, enjoyable trip home.  Take your time and stop along the way to see the sights if your health allows.
See you back in PA with an update?  BTW, wx here has not been the most pleasant since you left, we miss you!  The sky has been raining 'tears',  :'( ... or was that because of the elections???  LOL
Title: Re: Mayo Update
Post by: harlin on May 20, 2010, 11:27:24 AM
Navydad, You are making us nervous since we haven't heard from you :o

Please let us know how you are doing. We are praying for you!
hugs harlin
Title: Re: Mayo Update
Post by: bloodless on May 20, 2010, 01:14:28 PM
I agree. I know you're probably resting up from the trip, but we'd all love to hear from you. You're probably having vampire nightmares with all the blood they've been taking from you.
Title: Re: Mayo Update
Post by: kellyptyler on May 21, 2010, 02:29:42 PM
still waiting for update. :)
Title: Re: Mayo Update
Post by: baileybugster on May 21, 2010, 07:57:07 PM
I am really wondering about you.  Hope you have some news for us all.