Hi

[kathylee]

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.

Kathylee

[deeindiana]

Is it correct that you live in Pittsburg? I googled it and there is a Pittsburgh Medical University Medical Center.  http://www.upmc.com/Pages/default.aspx   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.
Deb

[Bopeep]

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

[CathyM]

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.

Cathy

[irish]

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

[eyeamdry]

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

[Dolly Dimples]

  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
               

[genko_b]

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.

Genko

[BonusMom]

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. 

[LeoLady]

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.

Hugs,

LeoLady

[littleme]

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. 

[shevonne]

Im praying for you Navydad!  Please seek medical attention!  Don't give up!

[Billydude]

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!!!!

[harlin]

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!!
harlin

[kwolfsheimer]

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.