Author Topic: Hi  (Read 8247 times)


  • Guest
« on: October 28, 2010, 08:14:06 AM »
I know its been a while,, Iam still around just not doing well,, this neuropathy has gotten to the oint that I can barely function, I call the neuro and they just tell me they cant do any more for me, I saw my GP last week,, he just gave memore pain pills,, Muscle relaxers,,, my hands still cramp up and there barely functiional, at night the fingertips cramp over waking me in pain and I have to striaghten them out, all day I jsut suffer in pain, I dont know what to do,, I am scared beyond belief, terrified that I am dying,, my bowels are a mess, just blac goo coing out, making no saliva at all, anythihng i eat just makes a mouth full of thick goo,, but the hands are scaring me,,, they have a mmind of there own, I cant control them,, the burning goes all the way up the arms,, I begged these doctors to take me serious but they just tell menothing,, I refuse to take anymore pills,,, my legs are nub and cold,, I can barely walk,, My wife wants me to go to a ER but what will that do,, I go there in this kind of shape and they will lock e up,,I am trying, I really am,, but am losing hope,, actually I lost hope,, I love you all

Joe S.

  • Hero Member
  • *****
  • Posts: 7693
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Hi
« Reply #1 on: October 28, 2010, 08:44:37 AM »
Hey, Navy, I am glad to hear from you but I am sorry to hear how bad you are doing. I have no suggestions for you that would involve traditional. The black ooze sounds like internal bleeding. Has your doctor asked for a stool sample?
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism


  • Hero Member
  • *****
  • Posts: 2212
Re: Hi
« Reply #2 on: October 28, 2010, 08:47:29 AM »

I'm sorry to hear you are in such bad shape.  I don't know what to suggest other than a large teaching hospital but I think you've already gone that route.  I hope you know how much everyone cares.

SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62


  • Guest
Re: Hi
« Reply #3 on: October 28, 2010, 08:56:43 AM »
Navydad, good to hear from you, but not in that condition.  Please listen to your wife and go to the ER.  Surely in the shape you're in now, they will have to listen and have to run tests or something.  We all herelove you and care about you, please don't just ignore this and suffer.  As much as we get wary of the doctors and ways, they do hold the treatments in their hands.  Get to the hospital and let us know how things went.  If they end up admitting you, just look at it this way, at least you'll have a change of scenery and someone to wait on you hand and foot.  I may get it from the nurses on here, but I really wish you'd go get some treatment.  I think Joe is right, it dos sound like internal bleeding.  Not good.  Prayers and hugs and best wishes being sent to you.  We do love you.

Peace be with you.



  • Hero Member
  • *****
  • Posts: 864
Re: Hi
« Reply #4 on: October 28, 2010, 09:36:57 AM »
So relieved to hear from you, but very sorry for all your pain.  Please go to the E.R., maybe you will get a doctor who knows more or is willing to run some tests,  NEVER give up!!  We are all praying so hard for you.   Love, 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

YYC_ Mommy

  • Guest
Re: Hi
« Reply #5 on: October 28, 2010, 09:50:31 AM »
Navydad, glad to hear from you but so sorry that you are in so much pain.

I too would say that you should follow your wife's advice and go to the ER. You might not get anywhere but at least you and her would have piece of mind that you tried once again.

Hoping that something will help you soon! You are much loved here.


  • Guest
Re: Hi
« Reply #6 on: October 28, 2010, 09:51:56 AM »

So sorry to hear what's happening with you. Wow! And we want to say we're having a bad day...(sarcasm)

Like puccini914 mentioned, so what if you're put in the hospital and taken care of; a bit of change of scenery. I'm not ususally so strong with a recommendation but it sounds as need to go to the freakin' ER, man!!
Please do not ever give up; we aren't!

Peace and prayers,


  • Guest
Re: Hi
« Reply #7 on: October 28, 2010, 09:57:15 AM »
Dear NavyDad,

I joined this forum a little while ago because my twin sister has Sjogrens. I could tell from reading the forum posts that people here care for you. I even checked your profile a couple of times to see if you might be online. I've read many of your posts and it is obvious that you are suffering, but it's also apparent that you have tried to help others along the way. Please get to an ER and get checked out. Sounds like you might be in the Pittsburgh area? Twin and I are from Zelienople.  Please take care - seems like lots of people hope you do.

YYC_ Mommy

  • Guest
Re: Hi
« Reply #8 on: October 28, 2010, 10:01:50 AM »
Hi Navydad, I am glad to hear from you but sorry to hear that you are in such pain.

I too would recommend that you follow your wife's advice and head to the ER. You might not get anywhere but you and your wife would have the peace of mind that you tried again.

You are much loved here.


  • Guest
Re: Hi
« Reply #9 on: October 28, 2010, 10:15:32 AM »
So glad to hear from you. I like the rest say go to the ER. Praying for you and hope you check in more and let us know how you are.


  • Guest
Re: Hi
« Reply #10 on: October 28, 2010, 10:17:10 AM »
Thanks for touching base with us.  We all think about you and I am sure there's a big prayer circle too.  Perhaps the doctors need to hit the books a bit more and find some relief for you.  It just isn't fair.


  • Guest
Re: Hi
« Reply #11 on: October 28, 2010, 10:33:43 AM »
Oh, gosh navy -

Glad to hear from you at last, but so sorry things are still going downhill for you.  Can't really suggest anything except that maybe you need to be hospitalized at a really top notch facility and worked up with an  internal medicine doc in charge as head of a team of specialists to try and finally find out what's wrong!

It's unbelievable that you're gone on for such a long time without any relief.  There just has to be answer.

All the best to you.



  • Sr. Member
  • ****
  • Posts: 481
Re: Hi
« Reply #12 on: October 28, 2010, 11:12:56 AM »
My thoughts and prayers are with you.


  • Global Moderator
  • Hero Member
  • *****
  • Posts: 9201
Re: Hi
« Reply #13 on: October 28, 2010, 11:28:23 AM »
Hi Navydad  :)

Good to see you around.

I'm truly sorry your neuro appears to have given up on you.

Have you ever had your gastro issues properly evaluated? If I were you I would make a real fuss about them because if you are not 'moving' properly you will be slowly poisoning yourself. Black goo doesn't sound good either. It could indicate blood in the stool.

Please listen to your wife. Take a stool sample to ER with you. This sound like way more than SjS alone.

Take care - Scottie  :)   (our home page)   (find our chat times here!)  (way to chat + nickname and #Sjogrensworld)

Never do tomorrow what you can put off till the day after tomorrow!


  • Guest
Re: Hi
« Reply #14 on: October 28, 2010, 11:33:58 AM »
I do not know where you live, but I am also feel you should be get another opinion in a large medical center or university medical center.  Let me know what city, may be I can make a suggestion.  Take care.