Now I don’t know what to think. My husbands spinal puncture showed his proteins were not elevated at three weeks post onset. The neurologist said so he was wrong and it is not guillian barre. He doesn’t know what it is and it is very usual. He said that after three IVIG treatment that he sees a slight improvement in my husband strength. My husband does not seem any better. So he wants us to try and start physical therapy and come back and see him in three weeks. He was so certain of his diagnose at the beginning. Should I request a referral to a neuro muscular specialist? I don’t like that he just plain doesn’t know what he has now and is not ordering anymore testing. Can you have guillian barre and not have elevated proteins in your spinal fluid. At first we were excited that it’s not guillian barre but the fact we don’t have a diagnoses is perplexing. I guess we just wait and see if he improves. Any ideas of things that present like guillian Barre?
Thanks this is so stressful
Roo
I read a post on Facebook today that said sometimes protein isn't found in the spinal fluid, but the diagnosis is still GBS, based on symptoms. You may have to get a 2nd opinion.
My case was thought to be mild GBS and I did not have elevated proteins in my spinal fluid. I had other indicators but it's tough to get the diagnosis. I would get a 2nd opinion soon while I was still having initial symptoms.
Thank Carol
Tthe doctor called us back yesterday after consulting with a neuro muscular specialist at UCI in Irvine Ca. Now He wants my husband to do more IVIG shots for two more weeks.
He did not mention a dialog nostril change have to meet with him in two weeks
Thosks Roo
Carol said:
I read a post on Facebook today that said sometimes protein isn’t found in the spinal fluid, but the diagnosis is still GBS, based on symptoms. You may have to get a 2nd opinion.
Hi Tarhealing
Thank you for sharing that your proteins weren’t elevated either. I have been trying to research and it seems like every other type of severe neuropathy and weakness has a slow progression when it presents. I can’t find anything else that make sense other than guillian barre. He went to bed fine woke up arms and hands didn’t work. Got worse for three days and leveled off. The doctor called yesterday afternoon after consulting with a neuro muscular specialist and has lance doing some more weekly IVIG infusions. I think maybe we better request a specialist. Maybe the one he consulting with would be a good start.
Thank you so much
Roo
Tarhealing said:
My case was thought to be mild GBS and I did not have elevated proteins in my spinal fluid. I had other indicators but it’s tough to get the diagnosis. I would get a 2nd opinion soon while I was still having initial symptoms.
There's a lot they don't know about this condition, and like was said you don't have to have the elevated protein. My neurologist didn't even want a lumbar puncture, although it took me six months to get to her so she found it pointless. I imagine in your husband's case the best thing to do is see a specialist who will rule everything else out since there isn't going to be a smoking gun for GBS in his case (like elevated protein etc...).
Thank you for your input. I think a specialist will be the best course of action. The Doc tells us one thing consults with others and calls from home with a change in treatment plan. It is very difficult on my husband. He just wants to know so he can he his mind on tract. It would be easier to just be seeing the neuro muscular specialist
and it get it from the horses mouth so to speak.
Thank you
Roo
Nostromo said:
There’s a lot they don’t know about this condition, and like was said you don’t have to have the elevated protein. My neurologist didn’t even want a lumbar puncture, although it took me six months to get to her so she found it pointless. I imagine in your husband’s case the best thing to do is see a specialist who will rule everything else out since there isn’t going to be a smoking gun for GBS in his case (like elevated protein etc…).
I have found that some look good on paper but are out of touch with actual patients. Just watch that. I feel that it's important to be selective because what one doctor says can sometimes influence another doctor when it's documented in your record incorrectly. It should not be the case but it can be and once it's there it's permanent. And some won't just say they are not sure. It only adds to the frustration of GBS if the diagnosis isn't as clear at first.
I can relate. I have seen 3 different neurologist and had 3 different diagnosis. It has been 1 year ago. I was told October 2014 it was Guillian Barre, March of 2015 Cipd, May of 2015 Idiopathic Transverse Myeletis, every test I have taken has been negative. I would have to say only God knows. It only effected my legs and bowel and bladder incontinence. I have had so many test. I am cancer free. I don’t take any medicine. I am allowing God to heal my body. I have no trust in the doctor’s at all. I have not been able to walk yet. I am in my 4th round of physical therapy. Praise God! I will be walking real soon. GOD has the master plan for me. I will share this testimony all over the world.i had 2 rounds of Ivig treatments. Did you lose your mobility? I was walking 15 to 18 miles a week and very healthy. Stay strong, positive, and never lose your FAITH!! GOD WILL HEAL YOUR BODY!!!
Thank you for your input Shirley. It’s my husband and he fortunately did not lose mobility of his legs. He lost all use of his hands and arms. His is a mild version compared to most. I have gotten two names of good doctors and I am waiting to fin out if they are covered by our insurance.
Thanks Roo
I was in the hospital last week and got IVIG even though my 2nd lumbar puncture showed no proteins. The neurologist seeing me in hospital was not the one who originally diagnosed the GBS. He said some symptoms were atypical but did not say that it was NOT GBS...just shook his head. Upon release, he wrote orders for a repeat of the conductivity test and for EMG. So far the IVIG doesn't seem to have had much effect.
Some sites mention Chronic inflammatory demyelinating polyneuropathy (CIDP) as a separate but similar syndrome while others just call it a version of GBS. Descriptions of it fit the timeline of whatever the heck I have more closely that GBS itself...duration and muscle tremors, for instance.
I am trying to schedule a 2nd opinion with the head of a neuroscience institute. My insurance just approved do hopefully I can get him in soon. He still has one more ivig infusion tomorrow. He had his first consult for or yesterday and he slept for 14hrs and is sleeping again for 4more. He is destroyed. I cancelled the rest of the pt until I talk with the dr. I don’t think he is ready for pt.
thanks Roo
Hi Roo, I too did not show any elevated protein levels in my spinal fluids. Doctor also did an electrodiagnostic test. After that he ordered IVIG based on all the symptoms indicating GBS.