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Living with Polyneuropathy CIDP, GBS, & CMT

IViG treatments and time line to show any progress


#1

Hi guys. Thank you for accepting me to your forum. My husband was just diagnosed with GBS variant a week ago. He has a mild version compared to some. He woke up one morning after having the flu and couldn’t make a fist or grip. His hands wouldn’t work right and his arms were weak and didn’t feel right. He has back and neck issues so they first thought it was spinal cord issues. He got worse over the next couple of days. He was diagnosed after a EMG test. Where he has no reflexes in his hands and arms and reduce reflexes in his legs. His nerves are sluggish and only working at 50% in his arms and hands. He can stand and walk but only for a very short time. He can’t waolk a straight line. Balance issues and almost fell in the shower. He needs help with going number 2 and dressing and shaving. He can’t open a bottle of water. He his a big strong man 6’4" 250 lbs. he has lost 17 lbs since this all started 3 weeks or so ago. The skin on his biceps is hanging. He is so very fatigued just exhausted all the time. I am trying so hard to keep him from getting too depressed. He had three days in a row of I ivig treatments on Friday, sat and Sunday. He has no change. Does anyone know how long it takes to know if it is going to work or start feeling any improvement? We meet with the neurologist again on Thursday to find out if we are doing three more days of treatment or something. He discussed weekly for a while then monthly treatments.
Compared to what most of you have over come and the severity I feel a bit ridiculous complaining. I am just hoping that I can give him a light at the end of the tunnel to look forward to.
Thanks for any input.
Roo


#2

Roo,
There are so many different severities with GBS it’s difficult to predict recovery time. I have been 3 1/2 months in recovery and some days I just can’t see that light at the end. But then a couple of good days come around and my attitude gets better. It takes a long time to recover because you are relying on your body to heal itself. The only real control is attitude and exercise, both of which are hard to manage sometimes. It took me three weeks to finally get all the emotional breakdowns to stop and really understand that you can recover. It is just slow. I try to focus on evaluating myself on a weekly basis. If you look for daily improvements it’s very frustrating. And as I said there are good days and bad days. Trust your doctors to nail down the treatments and begin the recovery. I will never forget my neurologist telling me on my second day of five iVIg treatments that I would be discharged in the same shape I was in when I was admitted…that was the big eye opener…hang in there and we pray for GBS recoveries everyday…


#3

The IVIG treatments only slow or stop the progression of the disease, it’s not a cure. You just have to wait for the body to heal itself as best it can. Once the treatments are over you can treat other symptoms such as pain and he can undergo PT.


#4

Thank you T6texan and Mark for that information. We thought the treatment s were the cure. Good to know and hard to accept. We will get through it. I put a recumbent bike in our den and got him some 2 lbs dumb bells to try and maintain as much muscle as he can. He looks so emaciated. He actually got on the bike three times last night. Only for a couple of minutes. I was so afraid when I brought the dumb bells home he wouldn’t be able to lift them, but could yeah. I was terrified if he couldn’t lift them it would devastate him.

Today is a new day. One day at a time.
Roo


#5


Roo said:
Thank you T6texan and Mark for that information. We thought the treatment s were the cure. Good to know and hard to accept. We will get through it. I put a recumbent bike in our den and got him some 2 lbs dumb bells to try and maintain as much muscle as he can. He looks so emaciated. He actually got on the bike three times last night. Only for a couple of minutes. I was so afraid when I brought the dumb bells home he wouldn't be able to lift them, but could yeah. I was terrified if he couldn't lift them it would devastate him.

Today is a new day. One day at a time.
Roo

#6

One day at a time! Remember it’s a process. But it gets better!!! Tell him to never give up in his mind! His body will get better but it’s important for his mind to stay focused on the prize!! Prayer and patience were my best friends! As long as he can fight in his mind and in his heart, his body will catch up! God Bless!! I’m here if u need to talk.


#7

Asia
Thank you for the incouragement. I am trying to keep him positive and I think he is. Now the doctor is trying to change is diagnoses because proteins were not elevated in his spinal fluid. He doesn’t know what my husband has and wants us to just wait and see if he gets better. If it is not guillian barre that is great but hard to handle no diagnoses doctor says what he has is very rare and he can’t diagnose.
Roo




Asia said:

One day at a time! Remember it’s a process. But it gets better!!! Tell him to never give up in his mind! His body will get better but it’s important for his mind to stay focused on the prize!! Prayer and patience were my best friends! As long as he can fight in his mind and in his heart, his body will catch up! God Bless!! I’m here if u need to talk.