LindaB

Your Replies

  • September 5, 2015 at 6:34 pm

    Hi Breakdown41,
    That’s similar to my husband with the salivary gland. Come to find out, it never grew anything in the petri dish. It wasn’t an infection. But now we think it was an attack by his immune system. More and more, after meeting with a great rheumatologist, we believe that he has an auto immune disease in the lupus category. Maybe Sjogren’s disease. That sounds a bit like yours. Look up Sjogren’s syndrome and you’ll see the gastro and nerve symptoms as well as dry eyes, mouth, and other miseries. Everything I read says it takes up to 7 years to be diagnosed.

    Thanks for your response. Maybe you have Sjogren’s? I think GBS may not be our answer, but similar symptoms minus the paralysis.

    September 3, 2015 at 2:16 am

    Hi Alogstrom,
    Thanks for your story. You’re so lucky to have been diagnosed so quickly! My husband seems to walk okay, but shuffles a little sometimes. This constipation has been brutal. We went to the ER this morning and were sent home with colonoscopy prep so he could go to the bathroom. It’s been all day and still no poop! His stomach is making sounds now, so maybe there is hope. He is seeing Arthritis Northwest on Friday. I hope they have the ability to diagnose him. We live in Spokane, so we are not too far from the University—-5 hours.

    Isn’t it amazing how they blame stress when they don’t have a clue? I went for a year and a half with moderate central stenosis and a pinched nerve on C5/6 and could not get anyone to help me. Two neurosurgeons told me it was not my neck. They treated me like a drug addict or drug seeker. No one would help me. Finally, I got to the right person and had surgery. I am now recovering. It’s been almost 3 years in total from the time of my injury. Three years gone because doctors would not listen to a middle aged woman with extra weight. Men do get better care and are taken more seriously.

    The ER doctor acknowledged GB, and said many bacteria and viruses can set the nervous system off. my husband may have sarcoidosis rather than GB. Sjogrens is also a possibility. All have symptoms similar to his. He doesn’t have the paralysis of GB. So who knows? Maybe with more time he would? I don’t know. Baffled.

    September 1, 2015 at 7:40 pm

    Thanks again for helping. I sent the message on to him. We have an appointment with a Rheumatologist on Friday. I will go and BEG him to try some prednisone. The worst part of this disorder, besides the nerve pain is the fact that his stomach and intestines do not work. He goes days without using the bathroom and just feels terrible. He had to go off Gabapentin cold turkey yesterday because he felt like his throat was closing. He has a band of tingling that goes under or near his diaphragm. I am very worried about him. He was supposed to get an MRI on his head to look for MS, but that was two weeks ago. I called the insurance company and asked about progress in getting that approved. They have never gotten it from the doctor. I am exasperated to watch him suffering and possibly going into a critical stage while they pick their noses. It’s so hard to get anyone to move on anything now! We’ve been to the ER already because he felt breathless, but they sent him home. I am tempted to dig out some prednisone from my doggie pills and give him one!!! But I don’t want to screw up any tests in a few days. Again, thanks for talking to me!

    August 31, 2015 at 11:54 pm

    Thanks so much for talking to me. What did they use to treat you? Steroids? He is seeing a Rheumatologist on Friday. Maybe he can test him and treat him. His GP is at least trying to get him an EMG since the neurologist is 100 years out. People could die waiting for these people. Sad that the medical field is so specialized that people have to almost die or become invalids waiting. Should not be rocket science. What would it hurt to throw some steroids at someone and see if they get better? I will send this post to the hubby. Thank you so much. Let me know the treatment and maybe the doses if you remember. Are you still being treated? If so, what do you take?

    August 31, 2015 at 9:58 am

    My husband did get tested for Lyme disease and was okay. I sent a private message to a neurologist who I saw for nerve pain in my arms due to a herniated disk. My husband’s doctor just retired and he supposedly put in a referral with this neurologist, but as usual, we have heard nothing. I called and left a message, but again, got no calls back. Sad what is becoming of our medical care. Thankfully, I have a way to email this doctor because I saw him awhile back. Even that can take a few days. Most doctors seem to think that everyone with GBS becomes paralyzed, but from reading the forum, that is not so! My husband is going to see a rheumatologist this upcoming Thursday. Maybe they can help nail this down, too. Very hard to see someone suffering. He is a few years from retirement, so he really needs to work yet. I wonder if a person can be on disability with this disease. It is pretty disabling even in mild cases. Thanks for all your replies!

    August 31, 2015 at 12:24 am

    Thank you for answering! Do his symptoms sound familiar? I am worried for him. He doesn’t want to take much for pain medication, but is suffering. Cannot poop, so pain meds make it worse, etc. Really a lot of misery—full body nerve issues and then the stomach thing. What a cruel thing. But glad to know that the EMG confirms. We are trying so hard to get in to get one. Taking an eternity. No one moves fast when you’re in pain.

    Do you still have ongoing pain? How long? What do you take for it? Thanks for caring enough to respond so quickly!