Pattys00
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October 24, 2011 at 11:16 pm
I will try and give you the timeline for my husband. He isn’t exactly a computer geek. I am.
January 5th 2011 he had a cracked tooth extracted. He had fallen skiing a month before and cracked a molar. The day after he had it extracted he was really really sick. In and out of it all day. He was thinking it was the pain meds.
The next day his back really hurt him. He started having night sweats. Soaking the bed. The his legs felt tight when he would wake up in the morning. He even got to the point he would get up in the middle of the night and walk on the treadmill to stretch them.
Then the tingling and pins and needles started. After 14 days he started walking like he was walking in mud. It got worse every day. By the end of January, he was walking with the classic waddle.
Beginning of Feb, they did an MRI to make sure he hadn’t hurt his back with the ski fall. Feb 18th he had an appointment with a Rhumatoligist (sp???). Luckily she was the wife of our GP. By the time we got home, we had a call from a Neurologist asking us to go to the ER. They did a spinal tap and he was diagnosed with GBS. They started IVIG that night. After 5 IVIG infusions, he was sent home to wait.
March 3rd, he fell at home. I couldn’t get him us. I broke my back 10 years ago in a rollover accident. We got him back to the Neurologist the next day. He was admitted to the hospital where the started 5 plasma pherisis treatments. They did nothing. Well, he actually had more energy, but kept declining.
At that point I was beside myself. He was released to a nursing home. He could only walk about 10 feet with a walker.
I used every contact I had and found a neuro-muscular specialist in Seattle and was able to get a cancellation with him on March 30th. By that time, my husband could no longer walk. His transfers were getting scarry. Someone had to be with him to keep him safe. That was about 8-10 weeks into the progression.
He was then diagnosed with Pure Motor CIDP by observation and emg/ncs. His sensory nerves are ok. That is a blessing. He doesn’t have pain, just pins and needles.
The Dr in Seattle ordered higher doses of IVIG weekly. We started that the next week. It took until the end of May for the decline to stop. 5 weeks into the IVIG.
He started walking about 2 months after the decline stopped. We were released from the nursing home when he could do transfers safely without help. His recovery has been quick. At least looking at it from this side.
But, he still has foot drop and absolutely no control of those feet. His upper body is doing pretty good. He can wiggle the toes on one foot about 1/2 inch. That is an improvement.
So, for us it was about 4 months down, and so far about 4 1/2 months up. He still has the tingling. His hands can now pull 50 lbs. They got down to 0.
So, that our life so far with CIDP.
October 24, 2011 at 12:37 amWe are going to Orlando. I have a business seminar there. Trying to figure out what to take. I want to take his wheelchair so we are not limited. He is unsure about that one. I want to go to Epcot to the food and wine festival. I think a wheelchair would be a good idea.
I got him some folding canes. He is working on walking with two canes without AFO’s. Doing ok. So, I think he will do ok getting into the pool.
All this started January of this year. He went downhill for about 4 months. Spent 3 1/2 months in a nursing home stuck in bed after he fell and couldn’t walk anymore. He started walking two months after recovery started. He is now walking about 2 miles per day. He has been on the road of recovery for 4 1/2 months. I think he is doing fantastic.
Any advise on travel and what to take would greatly be appreciated!
October 12, 2011 at 7:37 pmMy husband came down with GBS, later changed to CIDP the beginning of the year. He didn’t go as far down as your wife. He declined for months. I remember the sheer terror of the situation and helplessness I have felt though this whole ordeal.
I wish I could give you great advise, like “it will get better”. You both will get through this….but I am not there yet.
Posting here is what helped me get through each day. I have never felt so completely helpless and out of control in my life.
My advise is, take a bit of time for yourself. Go get a cup of coffee and breath. I didn’t do any of this until Marshall started getting better. That was 4+ months. I was a wreck. Well, I am actually still a wreck.
But, my husband is walking now (with a cane and braces). If you need to talk with someone, please email me! [email]patty@nsnw.us[/email]
July 9, 2011 at 11:34 amYou sound similar to the timeline for my husband. He had a tooth extracted January 5th of this year after cracking it in a ski fall. Next day he was sick as a dog. Immediately after that he had back pain, night sweats and muscles started feeling tight. Walking became more and more difficult.
Feb 18th he was diagnosed with GBS. Started 5 IVIG treatments. No response. Kept going down hill.
March 3rd he fell at home. He was admitted to the hospital and started 5 plasma exchanges. He was released to a nursing home. He could still walk a few feet. Kept going downhill.
I started trying to find a specialist in Seattle. We live in a smaller community and needed a specialist.
Got into see Dr. Weiss on March 30th. My husband could no longer walk. He was then diagnosed with CIDP. Dr. Weiss at UW Medical center changed the diagnosis to CIDP and prescribed 8 weekly IVIG treatments with a much higher dose. By this time, Marshall’s legs were completely not functional and his arms were very close to not being functional. There were days when he couldn’t move his right arm at all. He spent 3 1/2 months in the nursing home.
After the 5th week of treatment, we finally started seeing the first signs of improvement. That was around mid May. Improvement has been steady.
We saw the neuromuscular specialist again on June 9th. Marshall still could not lift his feet off the wheelchair. Now 3 weeks later he is close to standing and has been accepted into UW in patient rehab.
[B]It was critical that we saw a specialist who had seen this and was just not reading about it in medical journals.[/B]
Find a specialist and get more aggressive treatment is my recommendation to anyone in this boat.
We now have a standing frame in our living so he can get weight on his legs and feet.
I hope this timeline helps.
May 30, 2011 at 12:39 pmWe ended up going from Bellingham to UW medical center to see dr. Weiss. Difficult to get into, but seems to be the best in Washington.
Good luck
May 28, 2011 at 11:02 amMarshall saw a specialist in Seattle about 10 weeks ago. Started him on weekly ivig at a higher dose and with specific brands that do not have sugars (I can’t remember the right term) which he has found to cause fewer reactions.
After 5 weeks of treatment we saw only minimal progress. 6 weeks we were discouraged. 7 weeks, the arms were getting stronger. At 8 weeks, we are amazed. His progress is doubling every day. Still not on his feet. Just starting to get some movement in the legs. But, we are hopeful he can come home in a few weeks.
We go back to Seattle to UW on June9th. I will post an update then.
March 9, 2011 at 11:20 amThanks for the info. My husbands gbs came on slower so the diagnosis wasn’t until about 2 1/2 weeks after he felt the weakness. He was hardly walking when he got diagnosed. IVIG didn’t touch it. 10 days after IVIG they started plasma exchange. He has had 3 rounds. He is being released to a nursing home this morning. Luckily I now see improvement for the first time in a month.
He also was very active, skiing every week and very fit. Hopefully, like you, he recovers quickly.
Good luck.
March 8, 2011 at 9:46 pmI am curious, how quickly were you diagnosed? What treatment did you receive? Was the treatment effective?
March 5, 2011 at 10:48 amUpdate – 3/6/2011
We had the first plasma exchange yesterday. They had to use 3 filters and it took around 4 1/2 hours due to the filters clogging. Pulled out 3.8 liters of plasma. Gave him a break today and have the second plasma exchange scheduled for tomorrow. He was cold and had a quesy stomach, but seemed to tolerate it pretty well.
Interesting about today, he didn’t take a nap. For the last 2+ weeks he has been sleeping absolutely every chance he gets. So, not wanting to take a nap today was wonderful. His headache was better and the back ache was better. No change in leg strength, but considering what GBS does, I wouldn’t expect a change until the nerve sheathing has a chance to start rebuilding.
Thanks again for everyone who helped give me strength to get through this!!!!!!
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Thanks for the advise. I had wanted to try and find someone in the area who has been though it to talk with. I will contact the foundation and try to get someone located. That helps so much to talk with others who have been through it.
We are quite familiar with nursing facilities in the area. We took care of our neighbor who didn’t have any family. With her we got to know just about every nursing facility in our community.
Now that he is getting the proper care, yes I am breathing much easier. We both know that 1, 2 or 3 year recoveries are not really that long. I broke my back just about 10 years ago in a 70 mph rollover accident on the interstate when some idiot lost control of his care and hit me. That would be an idiot without insurance. It took me 9 months to be able to walk more than about 20 feet. At 8 years I was still limited. Then something changed. Since 8 years, I have now run two half marathons. And I was never a runner before my accident. So, we are looking at my recovery and both of us have stated that 3 or 4 years really isn’t that long. Much easier to look back from this side of the calendar. So, we have been there, done that and know to be patient.
The understanding we now have for each other is so helpful. Marrshall understands the depression I had from my accident. I understand him taking over absolutely everything in our lives without ever complaining once. So, I think now that we have him being cared for properly, we are ok. We have some understanding of the other is going through.
He is am amazingly strong guy and even if he doesn’t come back 100%, we can accept the change. We know to focus on what he will be able to do!
March 5, 2011 at 12:31 amGot back to the neurologist today. He immediately got my husband admitted to the hospital and is going to start plasma exchange.
I feel much better now that he is in a safe place and getting treated.
One of the nurses suggested that we might think about heading down to Seattle if this doesn’t improve things. Bellingham is a relatively small community so the doctors don’t see this all that often.
Does anyone have knowledge of a neurologist they might recommend in the Seattle area?
Thanks to everyone for the help in the last 24 hours. If the doctor didn’t react like he did, I was going to get my husband to the ER and not go away.
March 4, 2011 at 2:33 amWell, things are not any better. He is still declining. Marshall is 56 years old. I am going to be calling the doctors tomorrow morning first thing. He has declined enough to where staying at home is not an option.
He fell and I couldn’t get him up. I called a friend who helped me get him into bed. So something has to happen. I called the after hours doctor tonight. What an idiot. He isn’t our normal doctor. He asked is this an emergency. Lets see, he can’t walk, I can’t get him to the hospital, what do you think!
I don’t know if I should be getting him to the emergency room, he is breathing fine. Is it ok to wait until morning. I just don’t know what to do.
