Its been 38 days since I was released from the Hospital after 5 days of IVIG. My symptoms at the worst was tingling and numb hands and feet with profound weakness in both legs. I have been walking like a duck for weeks. I have not measured the number of steps to mark my progress. But I don't feel there has been any and some days I think I am even weaker than the day before I am extremely frustrated. My question to all of you is, from the time you started walking how many many weeks / months did you feel that you were on the mend and felt like real strength was returning ?
I too will be watching any responses for you. My husband has many of the same symptoms. We are about70 days in, with an extra 2doses of IVIG in there too. Some days are diamonds, some days stone. Not the message you probably wanted to see, but do know you aren’t alone. Wishing you the best and think patience is a big player here. Not as easy as it sounds. Keep up the great work!!!
If you're up and walking now, consider yourself lucky. Personally, I was down for two months, and for a lot of people it's a lot longer. Rehab takes many months more. When the doctor tells you "most" people recover completely, I believe that to be false. There are lingering symptoms that (may) last for life. My legs and feet are numb and tingly about the same as they have been for the last year and a half. (Onset for me was two years ago.) I'm not trying to be a downer, but just letting you know that recovery is not fast or easy. You must have a lot of patience, and you must work at your physical therapy diligently. It will be extremely difficult, and after the first few weeks or months, you will probably only see improvement by looking at the long picture, like over the course of 3 or 4 months. Your personal attitude plays a big part. Be determined to live a relatively normal life, and you will.
Good luck, and don't give up!
Well, I first had symptoms of the GB in early October 1988. For me, I think I would say it took about 2 1/2 months to get full use of my legs again. I remember them telling me I had a gaint - walking like the duck. Now 25 years later, I feel I do not have a lot of strength in my legs. I can walk and dance just fine, but once I had to get into a truck that was pretty high - and I was not able to do that. I really just attribute that to my age - I am 68. I think you will be ok in time with the walking.
I remember in the beginning trying to eat. I could not hold a fork, and it was even hard to pick up a grape from a place. I am fine now.
I would tell you just don't get frustrated. It has been 13 weeks since I had my last IVIG treatment and I have made steady progress. When I first came home from the hospital (1/16/14), I was using a walker and my husband had to assist me in and out of the shower. My first day completely off the walker was 1 month after my last IVIG treatment. I started using my bowflex treadclimber again on 3/31 for 5 mins a day. I am now up to 11 mins a day on the treadclimber, small hand weights, able to cook dinner, do laundry and some cleaning. I am getting stronger every day but it is a very slow and frustrating process. I still waddle as my husband likes to call it but can get around. My hands and feet are still numb so I am still unable to work or drive yet (13 weeks).. Continue to push yourself a little more each day and don't give up, Please keep me informed on your progress. I am a 54 year old woman who used to power walk 2 miles in 20 minutes and that is my goal again.
Mary
Did your husband go back for another two doses of IVIG, or did he get seven originally. If he did go back for two more what prompted the doctors decision to get him back for the additional doses ?
Mary said:
I too will be watching any responses for you. My husband has many of the same symptoms. We are about70 days in, with an extra 2doses of IVIG in there too. Some days are diamonds, some days stone. Not the message you probably wanted to see, but do know you aren't alone. Wishing you the best and think patience is a big player here. Not as easy as it sounds. Keep up the great work!!!!
Hi Chico! We actually went back. Not sure what happened…overdid? Relapse? Or the GBS wasn’t done? His legs became very weak and overall conditioned worsened, so they gave two more doses. We have since had a spinal tap and should hear on that this week. The Dr is trying to determine if this is a “stubborn GBS” or CIDP. I would say he has stabilized tho feet still numb & hands tingly. But no worse and SLOWLY improving. He is 60 and a big guy. Played football, basketball, etc. so there are other aches & pains from residual injuries and I personally think those lines between everything get a little blurry. Still looking forward to hearing from our Neuro tho!!!
Chico, please be patient with yourself. Hit the D3, B12, and Niacin. Outpatient rehab is vital and will help your stamina and strength. I came home in a wheelchair, progressed to the walker and then the cane within 2 weeks. I constantly did rehab exercises at home in a spare bedroom, rode a recumbant bike and did everything I could to progress. On April 12th I ran my first 5K in a long time. It felt great. I had my symptoms arise in September of '13, spent 16 days in hospital, 3 days on IVIG. I am totally back to normal with my day to day routine but I probably will be on the gabapenton for a while to come because it helps relieve the tingling in my feet which is only at night. It also helps me get a good night sleep which is vital in the recovery process. The only other residual I seem to have is a little tingling in my nose and lips especially during a thunderstorm (what's up with that?) Good luck and stay positive, you'll get it back!
hey toni. just wanted to say that I to have the tingling on my hose. the doctor kind of laughed when I told him this so it is nice to know that someone else has this to. But not during thunderstorms. LOL
Toni said:
Chico, please be patient with yourself. Hit the D3, B12, and Niacin. Outpatient rehab is vital and will help your stamina and strength. I came home in a wheelchair, progressed to the walker and then the cane within 2 weeks. I constantly did rehab exercises at home in a spare bedroom, rode a recumbant bike and did everything I could to progress. On April 12th I ran my first 5K in a long time. It felt great. I had my symptoms arise in September of '13, spent 16 days in hospital, 3 days on IVIG. I am totally back to normal with my day to day routine but I probably will be on the gabapenton for a while to come because it helps relieve the tingling in my feet which is only at night. It also helps me get a good night sleep which is vital in the recovery process. The only other residual I seem to have is a little tingling in my nose and lips especially during a thunderstorm (what's up with that?) Good luck and stay positive, you'll get it back!
Hey Chico, it's been a little over 3 months since I went to the hospital and had the 5 days of IVIG. Then 7 days of in hospital rehab + 4 weeks out patient rehab once a week. the most important thing for me is to stay positive about this. as others have said it could have been ALOT worst. I kind of fall in the catagory of really lucky. I went from wheelchair to walker in a matter of days while in the hospital and 13 days later when I was released I was using a cane. Today I have not used the can in 3 weeks. Fingers and feet have alot of nerve pain and I am taking Neurotin for this 1800 mg a day. I have weakness from day to day but a person with GBS told me a the hospital that this is a marathon not a sprint in recovery. Stay positive and do your exercises as best as you can. you will mend in time. we are all pulling for you!
I was a total quadriplegic from September 2012 through March 2013. I began taking small steps in March 2013. Strength in my legs improved at the end of Physical Therapy which ran from April 2013 to July 2013. A year later I feel a lot stronger but my balance is still off. You are extremely fortunate to be as mobile as you are. Don't be frustrated. This thing takes time. Simple exercising with ankle weights a couple of times a day for a few minutes is worth it. Got the weights at WalMart for about 10 bucks. Try them, you'll like them.You'll be fine before you know it. I wish the best for you and I know you will succeed at getting better.
Thank you all for the responses, I have learned more on this forum than from the doctors.
That's the thing -- the doctors know about it, but they haven't had it. (Exception to that is the doctor that was in charge of the physical therapy department at the hospital I was in for rehab. He had GBS when he was in medical school, some 25 years ago, and he's still in a wheel chair. Never regained the use of his legs. He was a real energitic guy, it never held him back.) (Plus, he married his physical therapist!)
Good luck, and keep plugging away!
My Update
April 28th - 47 days out of the hospital and went back Monday for a "booster" IVIG. About 10 days ago began loosing strength in my arms, a symptom that really did not exist until now. My Doctor sounds certain the decline make the GBS CIDP and is ordering IVIG every three weeks until he sees improvement.
I am considering an evaluation at Hopkins.
You're lucky your doctor is on top of this. It does sound like it may be morphing into CIPD. Good luck and best wishes to you!
Same thing happened to my husband. Except it was his legs, not arms. His Dr is treating it as CIPD, but he (my husband) is getting stronger. Good luck & keep us posted!!
When was his last IVIG ?
March 21. But the spinal tap indicated still elevated proteins. Should be getting another this week or next.
Chico, I would say it took a good week plus after the booster IVIG to see changes. He still gets tired and has tingling and numbness, but some days it is even better. And his strength and stamina are improving. Baby steps, but forward! Hang in there!! Thoughts & prayers for you!!!
Another good article
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533/#bibr39-1756285612457215