Author Topic: Time to say good by  (Read 20322 times)

lindaneall

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Re: Time to say good by
« Reply #45 on: June 10, 2010, 09:19:02 AM »
PLEASE let us know what you find out. Also, SHAME on that uncaring, unprofessional nurse!!!

Bernice

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Re: Time to say good by
« Reply #46 on: June 11, 2010, 10:38:47 AM »
Navydad

ya know I've been away for a bit so just reading this post. Well I must say I am truely sadden to read it! Look Navydad you are going through a WHOLE lot, but the key words here are GOING THROUGH, so just don't give up the fight.

You are fighter, yeah fighters sometimes get knocked down, BUT fighers ALWAYS get back up and fight again! Remeber that!

Who has not wanted to give up at times? It's o.k to feel this way at times, THEN you take in that next breath of air, clear your head and fight!

Peace & Be Blessed!
Bernice

kellyptyler

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Re: Time to say good by
« Reply #47 on: June 11, 2010, 07:23:03 PM »
Sure hope NavyDad lets us know how his apt. went yesterday.

Catilee2

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Re: Time to say good by
« Reply #48 on: June 11, 2010, 07:47:01 PM »
Navydad,
     like the others you are in my prayers. Your courage has been inspiring. please let us know how things have turned out. Not knowing what is causing the problem is maddening. last year before they diagnosed my second condition, my GP did not take my complaints seriously. It makes it so tough.  I empathize with you. I had all the local Drs. scratching their heads until I was refer to Brighams and Women's Hosp. in Boston.  Good news or not so hot news, you will be prayed for!!!
Catilee2

navydad

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Re: Time to say good by
« Reply #49 on: June 12, 2010, 11:15:25 AM »
I have nothing new to report,, the neuro actulyy only went through a few pages of the mayo report,, and sat ther for 20 minutes praising mayo,, all the while I;m telling him,, look my legs and arms hurt,,, I even went so far as to say,, I;mnot asking,, i;m begging for help,,, all i got was a suggestion that i try a new pain med,, today I am barely walking,, horrible sinus infection that the MRI from Mayo said was enlarging the bone in teh face,, I called the ENT on thursday,, I explained tot he nurse what it said,, she said it sounded serious,, I told her I can fax it to them,, she told me to do that,, I did and never heard a wrokd back from them,,, I have given up,, I;lm just to beat up and hurt to bad to continue on thiss road,, I have been this bad,, I am barely walking,, been up since 1am this morning,, I cant sleep,, legs and arms hurt to bad,, and my face is so sore,, and of course the mucos or lack of it has me gagging all night and day,, sorry everyone,, I had thought this idiot had something to tell me,, but did say we need to keep the rheummy involved,, what teh heck for,, mayo says I dnthave SS,, you people say I do,, who thehell do I believe anymore,,, I have told my wife,, I will not live a life like this,, I shouldnt have too,, I should not have to live like a cripple ,, at least with being a cripple,, you might not have the pain invilved,, but I just cant handle the sensory stuff,, when I talked to the neuro about it,, my sister who was tehre asked how bad Iw as,, he said hes in bad shape,, then went back to talk about his trips to the mothership as he referred to Mayo,, I am not seeing anymore doctors,, I refuse to see these idiots who do not take us seriously,, I am afraid I might just snap next time,,,

shevonne

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Re: Time to say good by
« Reply #50 on: June 12, 2010, 11:25:27 AM »
I know it is hard for you and Im so sorry!  Please dont give up!  Im praying for you and hoping someone finds the problem!  I know its easier said than done but you got to keep fighting!

Jack

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Re: Time to say good by
« Reply #51 on: June 12, 2010, 02:44:29 PM »
I'm really so sorry this is happening to you Navydad.  I think it's just awful that you have to suffer so much without the help you need and deserve.  Last night my neuropathy was so bad I felt like going to the ER and BEGGING for help but I knew that would be useless.  What's the answer?  I don't know.  All I know is that I won't give up seeking the help I need and deserve and I hope you don't either.  I will exhaust every avenue I have to find quality health care. I hope you will too.  Please stay with this board, you have friends here even if you might not have SJS. 

Cricket

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Re: Time to say good by
« Reply #52 on: June 12, 2010, 09:25:28 PM »
Navydad -

           I am so sorry you have to be torchored like this.  Please don't give up and don't leave this group, we are all on your side. Will keep you in my prayers.

Cricket
Female 64 yrs. old with:~Lymphoma ~SJS~, Fibro, Neuropathy, Spinal  Stenosis, Degenerative Discs, Shingles Arthritis, Hypo-thyroid.
Rituxan, Synthroid, Lopressor, Vasotec, Zantac, Zyrtec, evoxac, Lexapro, Neurotin, Ambien, Zanaflex, Voltarm, Vicodin, fish oil, Centrum vit.,  CoQ10, vit. D, Miralax

irish

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Re: Time to say good by
« Reply #53 on: June 13, 2010, 12:09:35 AM »
navydad, I have forgotten---have you ever been to a pain clinic where all they deal with is the control of pain. There are many new methods of controlling pain and the pain clinics are the place to go. The regular doctors don't go outside the box to treat pain as that is not their "specialty. I would search this out. You may not have a definitive diagnosis but the bottom lin is that you get some relief from pain.

Everyones pain receptors work differently and we all have different pain tolerances and react to pain in a different way. That is why there are pain clinics. They can do great things. Maybe you should give it a try. Also, might want to find a therapist who would talk about your pain and what you can do in your head to deal with the pain. Don't think that sounds far fetched as there is more than one way to skin a cat. Irisih ;D

gurs

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Re: Time to say good by
« Reply #54 on: June 13, 2010, 06:06:04 AM »
I just read a great article in this weeks People magazine (June 21) about a lady that had some kidney issues and they couldnt figure out why. She finally got in at
the NIH Undiagnosed Disease program and finally found her problem...an antibody in her blood impeding one of her proteins..she is doing much better now.
I also saw a TV special on discovery health about this center, and thought of you immed.

Dont give up...I would def contact this place!

rarediseases.info.nih.gov/undiagnosed
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

shevonne

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Re: Time to say good by
« Reply #55 on: June 13, 2010, 11:04:42 AM »
I saw something on that channel too; something called Reikers i think.  I immediately thought of navydad too!  Don't give up there is still hope and maybe you can look into Reikers also.  Praying for you!

Babs659

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Re: Time to say good by
« Reply #56 on: June 13, 2010, 04:31:49 PM »
Hang in there, Navydad.  Everyone has good advice.  A friend of mine had chronic pain and she went through several doctors before one found just the right combination of meds. 

Please stay in touch---what have you got to lose and we all love you here.

harlin

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Re: Time to say good by
« Reply #57 on: June 13, 2010, 06:35:53 PM »
Navydad, I am truely so sorry for you. We were all hopeing that you had finally found some answers.
We are all certainly praying for you and wishing you well.

love and prayers for you, harlin

sleeeepy

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Re: Time to say good by
« Reply #58 on: June 13, 2010, 07:13:39 PM »
Hey Navydad, just a note to tell you that we are all thinking about you and hoping that you will find some answers soon. We all know how you feel and want you to continue with us in our little family. Doesn't matter what you have because we are all sick and we all need each other.

Some of us aren't even sure what autoimmune disease we have, but we need to stick together. Just know that we are always here for you no matter when you need us even if you don't want to post as often.  Take care....Go Pens.....Mary

saranski

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Re: Time to say good by
« Reply #59 on: June 13, 2010, 08:32:08 PM »
Hi,
sorry to hear what is going on with you.  I read an article in People magazine today, the one with Natalie Holloway on the cover.  there was an article in there about a hospital/clinic with 50+ doctors that all they do is work on medical cases that no one can solve.  it was in this week's People magazine.  i am in bed now, but will post the clinic tomorrow, or you could go onto their website and look it up, it is worth a shot!!!!!  Best of luck.
Sarah