Wife Battling (newbie)
AnonymousJune 22, 2011 at 5:25 pm
My wife was diagnosed on Sunday in the ER and admitted. We went to the ER on Saturday where I suggested GBS after doing online research but they brushed the suggestion off. I figure they likely get everyone trying to self-diagnose rare conditions..
We are rather young (33) with a 4yr old boy and 18mo girl. They were introduced to daycare today as my wife was a FT stay at home until this week. I know they’ll do great!
Her GBS symptoms began Thursday evening with the classic tingling in hands, feet, and tongue. These progressed through Sunday to include legs, arms, mouth and back as well as unstable walking, weakness, and back pain. The first IVIG treatment was started Sunday evening and we will be starting the 4th tonight. So far the IVIG appears to be helping. The feeling in her arms and legs has improved along with some strength though her facial muscles are mostly paralyzed at this point and her mouth and tongue are very numb.
I’m not sure what the GBS will do going forward.. It seems the progress has slowed and perhaps even some recovery has begun but I’m relectant to buy into any hopeful trends until they trend longer.
We are well covered in prayer and support and continue to pray for fast healing!
June 22, 2011 at 5:46 pm
Keep fighting poppa and don’t give up. She needs you more than ever. Many of us here are grateful to our care-givers. Take all the help you can get. Symptoms sound to ME like Miller Fisher.
best, stay tough
AnonymousJune 22, 2011 at 5:53 pm
Not sure regarding the Miller Fischer, kinda hope it is given the possitive outlook! The nuero reported GBS after the spinal tap. It was rather wierd how the tingling started in her feet and tongue at the same time. From there it definately worked its way up.
AnonymousJune 22, 2011 at 10:27 pm
It sounds like you have a strong faith and I love the statement that you are covered in prayer. You are right when you say that your kids will be ok. You are going through a very trying time in your lives right now and you have to do what you have to do. God will protect them.
AnonymousJune 25, 2011 at 2:46 am
Thank you selahsmom. We are absolutely blessed in this crisis..
Holly is already being transferred to the acute rehab clinic. The doctors believe the worst of the damage is over and its time to begin improving.
Tonight Holly awoke in excruciating pain in virtually all of the areas where sensation was previously lost. It’s as if the impacted nerves are just now realizing what happened and are ticked off.. Anyone have any insight into this phase of the illness?
June 25, 2011 at 8:50 am
pain is now the new norm. pretty much everybody here has had to deal long-term with this. I think you need to ask your docs about a pain management program, see what they say. generally, it seems most of this is done through drugs, some of which are pretty expensive without a plan.
please check your private messages
AnonymousJune 25, 2011 at 9:31 am
There is different types of sensation and pain those with GBS will get.
Talk to her doctors and find out what medications they are giving her.
I take lyrica, there is another one but don’t know the name. Not sure if there is anything to take all the pain away.
Prayers for continued improvement.
AnonymousJune 27, 2011 at 4:10 am
Thank you for sharing your thoughts. Pain mgmt has greatly improved and Holly is able to sleep!
Although sensation is recovering quickly Holly’s legs are getting weaker.. Two days ago she was very strong in her footing and independent. She now hobbles and requires support.. since the docs have proclaimed the end of the decent and ushered in the plateau and recovery periods I am confused about this digression in leg balance and strength..
June 28, 2011 at 8:09 am
Dunno what to say, this all comes with the territory. Balance gets hit with a lot of folks. Might not be leg weakness but probs with equilibrium?
She will get better but you will both need to exercise patience. I hope that Mrs. Pig has a quick recovery.
AnonymousJune 29, 2011 at 10:43 am
I imagine, Poppa, what you’re going through, but believe me you need TONS and TONS of patience with this. My DH has started week #11 since I took him to the ER and believe me it’s SLOW especially if you’re the main care-giver to her and kids and everything else on your shoulders, but no other choice but to go forward and praying for the best.
My DH didn’t experience pain, but his BP went up quite a bit and he’s been on the meds for that. His face was also numb from his forehead to his chin. Now he says the forehead and around eyes are back to normal for the last two weeks. He was very sensitive to the outside light which is fine now and his nearsightedness deterioriated. A neuro-eye specialist said that his vision is fine, no symptoms as far as Miller-Fisher goes, but needed new prescription for glasses. Thanks goodness for small favors….:)
I wish you all the best in your journey.
AnonymousJuly 1, 2011 at 1:35 pm
I am thinking of you both as your wife sounds very similar to my daughter.. it is frustrating but always remember you and your wife are your own advocates. Rememberto always ask quetions and never rule anything out.. reesearch ask questions and make intelligent decisions. I think everyone here will agree, every case is different and every treatment regimaine is different… keep up the fight… You and your family are in my thoughts.
AnonymousJuly 2, 2011 at 6:11 pm
I had GBS when there were no treatments. I became completely paralyzed, on a respirator and unable to speak or swallow.
But I did recover and have lead a mostly normal life these past 34 years. GBS can leave you with some weakness and sensations like tingling. Some people also experience pain. Your wife has a good chance for a good recovery due to her age and the quick diagnosis.
Please tell her to hang in there and let her know that there are many of us who know what she is going through. She will get better. Fear and frustration are her biggest enemies right now.
July 5, 2011 at 8:34 pm
Hang in there this is a long and slow journey but things can and almost always do get better. Learn to think of improvements in months as opposed to days or weeks and you will see the gains.
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