Help! Hubby has GBS symptoms post infection. Does this sound like GBS?
August 30, 2015 at 7:50 pm
My husband is the patient. He went on a trip in May and came back very fatigued. He ached, and was exhausted for a couple of weeks. Had some nausea and lost his appetite. It was different than any other thing. Then a huge salivary gland infection popped up and it looked like the mumps. He had a low-grade fever, aches, and exhaustion. Very sick, really. ENT prescribed Augmentin and the first day, he felt like he had pins going into his toes, then his feet burned. Then his legs ached like he had run a mile. His calf muscles were twitching in a really weird uncontrollable way and the muscles hurt in his thighs as well. Then the tingling and aching moved into his thighs and then his arms. His arms ached and he had pins and needles in them. He developed lightheadedness and very low blood pressure. Nausea continued and when he ate, he would bloat. Constipation is horrible. Nothing seems to work. Days go by. He has pins and needles across his belly in sort of a band. Really weird neuropathy post infection. He’s had a few times that he felt breathless, but so far, after now two months, seems to be functioning—probably better than at first. The first month was really bad.
We think his symptoms sound like GBS. Doctor didn’t think it could be because he thinks everyone ends up paralyzed. But I see on the internet that there are mild cases as well. He went to a neurologist who told him that his neuropathic pain was abnormal and that he probably had cancer (he had two benign spots on his liver). No tests, nothing. Now waiting for an appt. with another neurologist who might have a clue. He is having such a time with his stomach and intestines which seem to not want to work. The nerve pain is tiresome. Sometimes his shoulder aches and his ankle. Sporadic weird bone like pain at times, but always the burning and pins and needles, too. He’s trying gabapentin and a very tiny dose of hydrocodone which buys him a little comfort, but constipates him worse, too.
Does this sound like GBS? We are thinking MS or GBS. His symptoms happened after a bad infection.
August 30, 2015 at 10:20 pm
The only thing I can tell you, is that first they thought I had a virus, stroke, then dementia and maybe a brain tumor, etc.etc. It took quite a while before it was confirmed only by an EMG test. Because every other test came back negative I had massive blood work,MRI’s of my back it was crazy. The only thing that’s going to confirm is a spinal tap, EMG test or nerves biopsy. I don’t know of anything else that otherwise will tell them differently. But I will tell you one thing it was getting to the point after so many months that even my husband was starting to question me. An EMG test was my saving grace.
August 30, 2015 at 10:25 pm
Forgot to mention, I think mine was brought on by dental work done and they did not clean the root canal out correctly causing a massive infection in my face on my right side and that’s where my tingling and numbness started ,on my right side. But I also had a flu shot within that time frame, plus a stomach bug.. it could have been any one of those that triggered it. Good luck
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!
August 31, 2015 at 12:41 am
I had no pain..still don’t, but have heard of others that had. Nothing came fast..no one was in a hurry except me.I knew I was in trouble. Every day I feared waking up and being paralyzed.5 month wait before I saw a neuromuscular specialist. My GP was the one who started me on prednisone 7 months ago.the neurologist I was seeing wouldn’t treat without a definite diagnose..said it was over their heads..then 5 months wait..thank god she started treatment.I can only imagine how much damage could have happen in 7 months. Just started imuran and they are starting the insurance paperwork to try to get me ivig.. sounds very likely uour husband has Cidp.I felt like I was in a nightmare. I’m sure your husband feels the same..Finding a good doctor is the hardest part.
August 31, 2015 at 8:38 am
Sounds somewhat similar to the symptoms I had with Lyme disease but nothing like those with GBS.
August 31, 2015 at 9:05 am
Yes, I would definitely have them test your husband for Lyme disease. I myself tested negative.
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 10:20 am
Mention Cidp to whoever will listen… months in a neurologist office and no one seemed to mention it. They even tested me for seizures. And it wasn’t until I said something, did I get tested and then by then it was very severe and the damage has already been done. Even at that point they still left me without treatment. My GP started treating me, thank God. I won’t be walking if it wasn’t for her. Because it took 5 months to see a specialist. My GP decided to go forward and treat me. But it was the best thing for me. Need a good doctor in your corner.
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?
September 1, 2015 at 12:08 am
60 mg of prednisone stopped the progression dead in it’s track..been on it since January…I knew within 24 hrs. I went from almost going into a wheelchair to about 95% back to normal..it can’t hurt to try even a short course.Some people respond well, like I did..others didnt. .can’t hurt..best of luck to you both 🙂
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!
September 2, 2015 at 12:20 am
I know it’s hard, but your husband waited this far. Don’t want to screw this test up..might be his only chance.
September 2, 2015 at 2:23 am
I was super constipated and I didn’t have a period so knew there was something really wrong. It took about 2 weeks of seeing dr.s until i was finally diagnosed. It wasn’t until i started falling for no reason they gave me an MRI. My hands and feet were comletly numb and they still tried to tell me it was other stuff. Like stress. I have never heard of stress making limbs go numb so i knew they were wrong. Demand more tests. I had to get an MRI, spinal tap, and a nerve test where they shocked my legs. If your close to Washington state go to the University of Washington. They saved my life.
September 3, 2015 at 2:16 am
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 4, 2015 at 5:13 pm
I don’t know if it sounds like GBS but *I* had parotitis a year ago and it started just this endless series of scary events. I never had a fever but I was sure when the parotitis turned into a horrible occipital headache that I had meningitis. Then the Neuro stuff started happening and it has not stopped since.
I’ve had the worst stomach problems since this started that I have ever had in my life. I was thinking in the beginning it was campylobacter, which can also cause parotitis. What helped me was to eat nothing but rice, rice krispies and butter for one month straight.
September 5, 2015 at 6:34 pm
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 5, 2015 at 6:54 pm
I have a positive ANA, and I’m borderline for anti-ssb only — all the other antibodies on the panel were negative. Anti-ssb is the partner of anti-ssa — when only ssb is positive, especially at such a low level, and since I don’t have dry mouth, dry eyes, or lack of saliva the rheumatologist said I didn’t have Sjogren’s
Since I’ve been floating around the internet for a year trying to figure out what’s wrong I always notice when someone mentions ‘parotitis” because it was so odd and I felt initially everything that happened afterwards was connected to that somehow. I agree it can be an attack on the immune system but there has to be some sort of pre-existing event that kicks it off.
I’ve been wondering if I somehow ran into EV-D68, the virus that was paralyzing kids in the news starting in October last year.
If it is an autoimmune disorder ( I think mine is, just no idea what it is yet) then alternative/functional medicine advises to first get digestion under control. Horrible digestion is really miserable and getting it in check can only improve quality of life even if doesn’t solve everything.
Good luck to you and your husband.
August 21, 2016 at 11:55 pm
Hola a mi me dio estreñimiento luego las piernas se debilitaron y perdi la funcion de los dedos del lado derecho de la mano, fui por emergencia y con inmunoglobiulina 25 frascos via indovenosa en dos semanas se restablecieron las funciones pero me queda un dolor en la mano y fatiga, es normal?
August 22, 2016 at 2:49 pm
Yes, those residuals are normal and may last up to two years as the body repairs the damaged nerves.
September 3, 2016 at 7:50 pm
I had GBS with paralysis and had the same feeling of a band around my stomach with bloating, constipation and the worse heartburn you can imagine. Was unable to eat much at all. I had two spinal taps before being diagnosed. I hope and pray your husband will soon get help. It is a horrible feeling when you know there is a serious problem and the medical professionals cannot find the problem. Then you start thinking they think you are insane, especially when you are a senior citizen.
Don’t give up. Pray and press forward.
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