I believe that I have GBS. I just got hit hard about 4 days ago where I have trouble breathing. I have tingling sensation on my feet, legs, arms, and mid body. Also, I have a prickling sensation on my fingers and toes, and occasionally elsewhere. Also, I have some loss of strength and soreness in my arms. However, I do not have any trouble walking. What is concerning me is the feeling of being out of breath. Also, I have no health insurance until Jan. 1. I am very stressed at the moment, and I have been chasing symptoms since 2005. I do not know what to do.
It started in 2005 with an inflamed digestive tract. In 2010 I noticed dry mouth and dry eyes. I started to piece together Sjogrens and possibly Celiac. It was probably the past two years where I had the tingling in my legs, which I thought was just a symptom of Sjogrens. Now that it has advanced, it meets the criteria of GBS. I do have psoriasis on my elbows and scalp as well. Any advice and insight is appreciated. I have been forcing myself to walk and I take lots of supplements that I believe have slowed down the autoimmune diseases. I do feel that I have more than 1.
Get yourself to a medical professional, preferably a neurologist or a major medical center, immediately. Having difficulty breathing is life threatening
Agreed w Sammi. From my little experience with GBS, it doesn’t sound like it’s the issue. But any time you have difficulty breathing, that’s incredibly serious. Perhaps try an Urgent Care. They’re often staffed w ex-ER docs and are typically much less expensive than the ER, but can may be able to give you a sense of the gravity ad immediacy of your situation.
I have been to a rheumatologist and 3 gastroenterologist and have received no information about what is causing me problems. The dry mouth, dry throat, dry skin, dry eyes is cosistant with sjogrens, but blood tests were negative. I likely have more than 1 autoimmune issue.
Difficulty breathing merits immediate medical attention and you should seek intervention immediately for that. I agree with the other poster, while there are different variants of GBS your symptoms and time frame don’t sound like it but many things can cause neuropathic symptoms like chronic low B12, so you should insist on being seen by a neurologist once you have the breathing issue looked at.
Breathing issues are not a joke! I was on a vent for 7-8 months when I was diagnosed ('82). What if you can't pick up the phone to dial because your arms are so weak?
Given the situation with your insurance, I would head to the ER. The hospital will apply for emergency Medicaid.
I want to follow up with my status. I went to the ER, and told the ER doctor that I had symptoms of Guillain-Barre. He said to me “The problem with you is that you read too much. I have only seen 1 case of Guillain-Barre.” I know it is rare, so in order to get help I had to play along. He required me to take a bunch of tests that I knew would turn out perfect. All I wanted was a Spinal Tap. He gave me some bogus garbage about it being unsafe to do a Spinal Tap without knowing the other results. I took the ordinary tests such as blood work and CT scans. Then they came into my room and requested I take the Spinal Test WITHOUT THE ORDINARY TEST RESULTS. I said do you have the results from the other tests? No. I signed the paper work and went down to take the Spinal Tap. The liquid was clear I was told as the test was in progress. So I go back to my temporary room where they tell me that all my tests were perfect and they are waiting on the Spinal Tap results. We get that back, and the ER doctor says, you get your wish and we will keep you overnight to monitor you since your protein levels were high (CSF 73HR1). They gave me an IV with fluids and an anti inflammatory. I felt better while I was there, but never got to see a specialist. I felt that they were just keeping me around to jack up the hospital bill. I was released the next day. As I said here before, I do not have full weakness, but numbing sensations are growing up to my face. There are different variants of GBS and there are some people that report mild GBS. I still have shortness of breath, but nowhere near as bad as the day I went to the ER. I have an appointment to see a specialist on Jan. 2, and I am taking the test results with me.
OMG.. this ER Dr. is a quack like mine was. I got the best neurologist specailist in Spkane who had delt w/ GBS before.. He was amazing. and I started my treatment right away!!! I hope you get the help you need. Neurologists know more about what they are doing.
javajeff said:
I want to follow up with my status. I went to the ER, and told the ER doctor that I had symptoms of Guillain-Barre. He said to me "The problem with you is that you read too much. I have only seen 1 case of Guillain-Barre." I know it is rare, so in order to get help I had to play along. He required me to take a bunch of tests that I knew would turn out perfect. All I wanted was a Spinal Tap. He gave me some bogus garbage about it being unsafe to do a Spinal Tap without knowing the other results. I took the ordinary tests such as blood work and CT scans. Then they came into my room and requested I take the Spinal Test WITHOUT THE ORDINARY TEST RESULTS. I said do you have the results from the other tests? No. I signed the paper work and went down to take the Spinal Tap. The liquid was clear I was told as the test was in progress. So I go back to my temporary room where they tell me that all my tests were perfect and they are waiting on the Spinal Tap results. We get that back, and the ER doctor says, you get your wish and we will keep you overnight to monitor you since your protein levels were high (CSF 73HR1). They gave me an IV with fluids and an anti inflammatory. I felt better while I was there, but never got to see a specialist. I felt that they were just keeping me around to jack up the hospital bill. I was released the next day. As I said here before, I do not have full weakness, but numbing sensations are growing up to my face. There are different variants of GBS and there are some people that report mild GBS. I still have shortness of breath, but nowhere near as bad as the day I went to the ER. I have an appointment to see a specialist on Jan. 2, and I am taking the test results with me.
I agree with the doctor you are reading to much. It is tough when we have something that doesn’t have an easy answer, but any symptom can be 1000 different illnesses.
It has been my experience never tell a doctor a diagnosis unless it is in writing from another doctor. I have been told by more than one doctor that medicine is 99% in the mind of the patient. Studies have shown many times that the placebo effect often works even for some operations.
The best way to go to a doctor is with a one page print up. Top CURRENT PROBLEM no more than 3 symptoms. CURRENT DIAGNOSIS with a bullet of each condition that has been determined by a medical professional and name of the doctor. CURRENT MEDICATIONS including recreational and over the counter. If possible the year started. Dosage and how often taken. Questions you have again no more than 3. I have used this system for about 30 years. It works so well that I stopped last June when my wife’s home care nurse’s company made up a detailed sheet with codes etc. this last month 4 of her doctors said they preferred my sheet and could I start doing it again.
If you live in the United States with the symptoms and diagnosis you gave the doctor he would be required to keep you overnight for observation if all tests were ok.
Remember doctors are just people with all the same fears, concerns and egos you have.
God Bless, may your search be fruitful.