Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: navydad on October 28, 2010, 08:14:06 AM

Title: Hi
Post by: navydad 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
Title: Re: Hi
Post by: Joe S. 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?
Title: Re: Hi
Post by: ohiolady 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.

Title: Re: Hi
Post by: puccini914 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.

Title: Re: Hi
Post by: Cricket 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
Title: Re: Hi
Post by: YYC_ Mommy 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.
Title: Re: Hi
Post by: Meld256 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,
Title: Re: Hi
Post by: twinsisincpa 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.
Title: Re: Hi
Post by: YYC_ Mommy 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.
Title: Re: Hi
Post by: kellyptyler 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.
Title: Re: Hi
Post by: sewandsew 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.
Title: Re: Hi
Post by: Sheltiemom 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.


Title: Re: Hi
Post by: rnathans on October 28, 2010, 11:12:56 AM
My thoughts and prayers are with you.
Title: Re: Hi
Post by: Scottietottie 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  :)
Title: Re: Hi
Post by: Gypsywomyn 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.
Title: Re: Hi
Post by: kathylee on October 28, 2010, 11:46:17 AM
Navydad, I HEAR you about the ER. I am scared as H*** to go there too as they know little of myasthenia gravis or sjsgrens. Mine even admitted they arent for diagnosing things to some extent. That being said I am very concerned about you. My first thought is that if you are anywhere near me I DO have a genious of an internist at the State university hospital. I still wouldnt be diag with sjogrens/sicc if not for her.
Message me privately or just messge here I will tell you where she is. I live in Iowa.

I have neuropathy too. Currently no one is treating it. I have a lousy neuro but great lung doc and internist.

Title: Re: Hi
Post by: deeindiana on October 28, 2010, 12:03:49 PM
Is it correct that you live in Pittsburg? I googled it and there is a Pittsburgh Medical University Medical Center. (   Perhaps a visit to their ER would get you to a specialist who could offer some help. It's so hard to live in pain with no hope. You deserve to find a caring doctor who can help you find some answers. I'm sorry you are going thru this.
Title: Re: Hi
Post by: Bopeep on October 28, 2010, 12:46:51 PM
Hi Navydad.
I was so relieved to see your new thread.

That was soon changes when I read the horrid mess you've found yourself in.

Please,please, please, a thousand times please DONT give up.
Im not about to give you any advise just a little support for you from a distance.

The thing I find difficult to understand is WHY on earth cant these people see the pain and discomfort you are going through?

I know it changes nothing having a gripe about it. However sometimes a good gripe is just what we need.

Im hoping that some of the contacts people are putting up for you will work. Dont loose sight of the fact that we all love and care for you here.
I for one missed you on line.

Lots of luv and hugs Bopeep
Title: Re: Hi
Post by: CathyM on October 28, 2010, 01:20:46 PM
Hi Navydad,

Good to see your post.  I know we have all been worried about you.  I just recently joined the board, but have been a long-time lurker, so I am familiar with your situation.  I agree that you need to get yourself to the ER ASAP.  The symptoms you are experiencing, esp. with your bowels, sound serious.

I live near Pittsburgh and my rheumatologist is at West Penn.  I'm not sure if it's permitted to mention names here on the board, so PM me if you would like her name.  She is very good and has addressed all of my concerns.

Please take care and keep us updated.

Title: Re: Hi
Post by: irish on October 28, 2010, 01:22:35 PM
navydad, I am glad that you posted so that we know what is going on. I am so sorry that you are still in such bad shape. I know that you are beyond worried and I don't blame you.

I still have never heard if you went to a gastroenterologist again. You sound like you really need a good workup. I know you think it is useless, but with all the problems you have had with your bowels you could very well be almost toxic from being so full of stool. That alone can make you really sick.

You sound like you are bleeding somewhere in your gastrointestinal tract. Sometimes one health issue can make the other problems worse. Please go to ER because the bleeding alone is something that needs to be checked out. At least they should check your blood work and get you into the system somehow. IF you don't have a doc then ask them for a name and a prescription/referral to be seen as fast as possible. You may have to work this out through your family doctor. Good luck at this. Get some help from your family. Prayers be with you. Irish ;D
Title: Re: Hi
Post by: eyeamdry on October 28, 2010, 02:51:01 PM
Hi Navydad: So relieved to see your post and please follow the pleading of the posters and seek medical help, ER if need be.  We all love you too.  gush.:-)
We miss you very much.  Lucy
Title: Re: Hi
Post by: Dolly Dimples on October 28, 2010, 04:37:30 PM
  Gosh Navy Dad, you were so missed here, had us all worried.
                                  So sorry tho' that you are still in a bad way my friend.

                     Do as wife says, we women know best!
                            See anyone who will see you, got to get help, you can't keep this to yourself anymore.

                              All I can do now is wish you well, and will keep you in all our thoughts and prayer.
                                                      Bless you. Hugs Dolly x

Title: Re: Hi
Post by: genko_b on October 28, 2010, 11:33:22 PM
Hi Navydad:

We all love you too. I wish I had a magic wand to wave over you and make everything better. Just remember you are always in our prayers.

Title: Re: Hi
Post by: BonusMom on October 29, 2010, 12:24:53 AM
We are very relieved to hear from you Navydad, but so saddened that you are not well.  I understand your reluctance to present at ER, but wish there was something/somebody that could give you the treatment you so desperately need.

Know that our thoughts are with you. 
Title: Re: Hi
Post by: LeoLady on October 29, 2010, 01:16:26 AM
Hey Navy:

Good to know you're still out there.  Please let your wife get you to the ER.  Get some help right away, please.

Pittsburg must have several hospitals to choose from.  Try a different one this time and don't leave until they have tested you up one side and down the other!
You are in our prayers.


Title: Re: Hi
Post by: littleme on October 29, 2010, 03:14:25 AM
Hi Navydad,

Seeing that you posted put a smile on my face.  I was so glad to see you were on.  I think everyone here wishes they could fix your pain.  You have dealt with so much and have been so understanding and compassionate to many. (myself included)  Please, even though you may be sick and tired of telling your story and seeing doctors...go. We are all hoping for better tomorrows for you.  Even if we cannot do much more than pray and hope, know you are cared for and understood here. 
Title: Re: Hi
Post by: shevonne on October 29, 2010, 03:23:55 AM
Im praying for you Navydad!  Please seek medical attention!  Don't give up!
Title: Re: Hi
Post by: Billydude on October 29, 2010, 08:49:29 AM
So glad you checked in.  Everyone was so worried about you.  I'm concerned about your depression and hopelessness and wish you had someone to talk to on a professional level.   We are all thinking of you!!!!
Title: Re: Hi
Post by: harlin on October 29, 2010, 12:31:33 PM
Oh my gosh, Navydad, I am so glad to hear from you. Yes, You do need to go to the ER. If the stool is black the bleeding could be coming from the stomach. Please Please go and have it checked out.

We have missed you so much and been so worried about you! You scared the H--- out of us! You are not that far from WVU Ruby hospital in Morgantown, WV they have an excellent ER and facility. They sure put me thru the tests. Give it a try Please.

Please again go to the ER.
We love and are praying for you!!
Title: Re: Hi
Post by: kwolfsheimer on October 30, 2010, 05:22:58 PM
Hi Navydad,

I haven't been on here for the past few days but just wanted to let you know that I'm so glad to see you back.  You've been on my mind the past few days. I was starting to get worried when your posts disappeared.

I am starting to get the neuropathy really bad also.  It is scary-- this whole thing is scary.  Everyday it is something else.  I wish I could find something that worked.  Finding a doctor who will be your advocate is probably the best thing that could happen for you. Until then, we'll be your support system. Please keep us informed as to how you are. 
Title: Re: Hi
Post by: Maria3667 on October 30, 2010, 05:35:14 PM
Hi Navydad,

Just a hunch: you don't happen to drink coffee, do you??

I get very weird symptoms from the bean, including pain in hands, arms, knees - practically ANY joint in my body. Also upset bowel....

Maybe it's far fetched, but if I don't tell you I'd feel guilty....

Take care!
Title: Re: Hi
Post by: Joe S. on October 30, 2010, 05:53:13 PM
Maria3667, you may have a high level of uric acid in your system. Gout and arthritis are the end results over time. High Active tart cherry extract (black cherries) can help reduce the levels of uric acid in your system.
Title: Re: Hi
Post by: Kerrikins on October 30, 2010, 07:49:50 PM
Navydad its good to see you but I'm sorry to hear that you are not doing well. I agree with the other posts suggesting another opinion. I hope that something can be done to help.
Title: Re: Hi
Post by: season on October 30, 2010, 09:12:36 PM

I wish you were all better.
Title: Re: Hi
Post by: Maria3667 on October 31, 2010, 06:25:37 AM
Maria3667, you may have a high level of uric acid in your system. Gout and arthritis are the end results over time. High Active tart cherry extract (black cherries) can help reduce the levels of uric acid in your system.

Are you sure they are black cherries? When I Google the extract, I only get pictures of red cherries (or are they berries?). Didn't know about the uric acid - thing is, if I lay of the bean, nasty symptoms subside...  ;)
Title: Re: Hi
Post by: Carolina on October 31, 2010, 08:10:45 AM
Hey, Navydad,

No fun, angel, no fun at all.

Like everyone else I wish I had a NEW suggestion, but I know that when you can't find help at Mayo, help is hard to come by!

Relief from the pain, cramping and other symptoms is probably the best you can aim for.

I don't know all the things you are taking or have tried.  You list Evoxac and Neurontin on your profile.

But I know you are taking other things and have tried many drugs. 

My last visit to a neurologist was totally disappointing, too.   All of my problems and symptoms were dismissed as part of getting older or the result of disc degeneration.  My SICCA was not addressed AT ALL.

And reading your experiences I realize that even if things get a lot worse, there probably won't be any treatments or cures.

I guess I keep thinking that in another month or so I'll feel better, sleep better, be stronger!   Funny isn't it, how that works?

I had knee surgery in April, and my knee is still very weak and painful, and I thought it was going to just keep getting better and  then be OK.

I know I don't even know about the surgeries you have had on your back and the results of those, I've just seen passing references to them.  And the surgeries on your sinuses, too.

Both types of surgery are discussed in my case, so I always look to you for advice and shared experiences.

If you have the energy and time to spare for us here on this forum, we all really appreciate your comments and opinions.

Take care, angel.  My thought are always with you.


Title: Re: Hi
Post by: Patze on October 31, 2010, 08:25:19 AM
Hi Navydad,

I'm so sorry to hear that you're doing so poorly, but please don't give up on the medical community!  There are other doctors that might have that "piece" of the puzzle that will put this all together for you.

How are you doing today?

Take care my friend and don't forget to keep in touch, okay?

Title: Re: Hi
Post by: Catilee2 on October 31, 2010, 12:09:24 PM
Navydad and others with PN,

     There is a conference in Washington DC for both Drs. and patients organized by the Neuropathy Association. It is being held in early Dec.  the web site is We(my husband & I) are already busy that weekend, so I know we won't be going. maybe someone there has some answers for the wide variety of symptoms and pain levels that occur in SS people as well as other AI disorders.

Catilee 2
Title: Re: Hi
Post by: aussie mum on October 31, 2010, 01:50:18 PM
Hi Navydad,

We've all been so worried about you! Thanks for posting again.

It must be so frustrating for you, being so unwell and the Dr's seemingly unable to help.
There must be a Dr who can put all the pieces of your medical puzzle together.

Please don't give up, please do as your wife suggested and get looked at again.

Sending gentle hugs from Australia

Aussie mum
Title: Re: Hi
Post by: Jules48cats on October 31, 2010, 04:09:55 PM
Hi Navydad,
I hate to hear that you are still suffering and in so much pain.  I know its hard but you need to hang in there.   Maybe you should try and find a new neuro or Rheumy.  I agree with you about ER's I try to avoid them too, but if you are in that much pain you should maybe give it a try.   
My husband was not doing well because he has chronic diarrhea.   He was seeing a gastro specialist, but he was losing weight and going 15+ times a day.  Well they referred him to a gastro at Hershey Med and they changed his meds and did some tests and he is gaining weight and hes down to 5 or 6 times a day.  I am so grateful.  We aren't chained to the house (bathroom) anymore. 
Of course I am not suggesting for you to go the Hershey, but it sounds like you have a lot of people from your area maybe they can suggest a good doctor in your area. 
You are in my thoughts and I will send healing thoughts your way.
Title: Re: Hi
Post by: Sarah on November 01, 2010, 08:05:37 AM
I am so sorry you are suffering and pray that some solution will come to you.  I have just finished reading the book "The Mindbody Prescription" by Dr. John E. Sarno.  It has some interesting theories on pain.  (I have been suffering for 5 years with extreme permanent nerve pain).  Might I suggest a psychotherapist who can help you cope with the pain?  I have done this and another man with PN in our group,just like yourself, have been helped.  After being bedridden I now function fully and enjoy life again.  Please give it a try - what can you lose?  I was on a great many pills - I only take an occasional baby aspirin now.  I too went to Mayo and so many doctors, I can't even remember their names.  Your body wants to heal itself.