CIDP sudden deterioration

    • Anonymous
      April 12, 2007 at 2:20 am

      Norb is not doing well. Three days ago he tripped going through a doorway and injured his knee. We spent three hours at the hospital to be sure it wasn’t more severely injured. Of course the knee is painful and I expected it to complicate his walking problems, but for the last three days, his problems seem out of proportion to the injury. Honestly, he can’t walk at all. He cannot sit upright without support and he can no longer get up from a sitting to a standing position without help. It takes all the strength I have to help him up and once standing, he can only barely maintain his balance. Today, he dropped almost every item he had in his hand. Even his breathing seems labored. The suddenness of this change is very troubling to me and I am wondering if any of you have had similar sudden worsening of symptoms like this. Talking to our daughter today, the two of us realized that his weakness seems greater on his left side (left leg & hand). We are beginning to wonder if this has nothing at all to do with his CIDP. Perhaps he has had a stroke. I am very worried about him. It would help to know whether a similar type of sudden change has happened to any of you. Thanks, Carol (Norb’s wife)

    • Anonymous
      April 12, 2007 at 2:33 am

      Carol,

      I am not a medical expert, but what you describes sounds more like a stroke. I had one back in 1999 and that sounds like how I acted/reacted. I was misdiagnosed in the beginning.

    • Anonymous
      April 12, 2007 at 2:40 am

      Thanks! It helps to hear that. I left a message with his regular doctor and hope to get him in to the office tomorrow. Your feedback is helpful.
      – Carol

    • Anonymous
      April 12, 2007 at 2:48 am

      Good Luck! I’ll say an extra prayer tonight. I’ve been waiting to meet Norb as I am newly diagnosed and he seems to be the man with the answers. I can’t wait to meet him.

    • Anonymous
      April 12, 2007 at 6:04 am

      Carol,

      I will keep this brief as I don’t have any experience with CIDP.
      Thank you for letting us know what is happening, you are all in my thoughts and prayers. Please let us know what the outcome of the doctors visit is. Send Norb my best. 🙂

    • Anonymous
      April 12, 2007 at 7:05 am

      Carol I will be praying for him. If it is a stroke after 24 hours a cat scan will show if it was a stroke not before. He should see his DR as soon as possible. Tell his DR you suspect a stroke. He may want him to be in the hospital started on drugs to prevent other strokes. Something like plavix or other drugs to prevent more strokes.

      Please make sure he sees his a DR any DR today. You don’t want to mess around if it is a stroke. Make sure the DRs listen to you.

      Sue

    • Anonymous
      April 12, 2007 at 8:16 am

      I hope everything is ok. Your family is in my prayers. Please keep us posted.

      Stacey

    • Anonymous
      April 12, 2007 at 8:26 am

      Carol,
      My concern and prayers are with you and Norb. Thanks for keeping us updated on the situation.

    • Anonymous
      April 12, 2007 at 9:50 am

      Hello Carol,
      Thank you for letting us know about Norb because we do care about our family here. I would definately get Norb to the Dr.’s and find out if he did have a stroke. Rule that out first, if the proper tests show that he did not have a stroke, then it is possible some things are CIDP related and to the neurologist ASAP. I know with me, my right side was effected more by CIDP, weaker, less strength, very poor grip in right hand over left, etc.

      Norb is in our prayers, as well as you and all the family.

    • Anonymous
      April 12, 2007 at 9:56 am

      Carol,

      Please tell Norb he is in my prayers, as you all are. Please keep us posted.

      Jerimy

    • Dawn Kevies mom
      April 12, 2007 at 12:38 pm

      Hi Carol,
      I am so sorry to hear about Norb. He is such a kind and knowledgeable man that has helped me with my questions several times. I will keep you both in my prayers. Dawn, Kevie’s mom

    • Anonymous
      April 12, 2007 at 12:40 pm

      Hi Carol,

      It does sound like a stroke to me also, but he could also be having a relapse. The Drs at the hospital should have looked into that the day you took him to the ER. If his breathing is labored I would take him back to the ER [B]ASAP.[/B] Tomorrow is not soon enough to get him a CT-Scan, he needs medical attention now.If he had a stroke waiting until tomorrow is not a good idea. I will keep Norb in my prayers.

    • Anonymous
      April 12, 2007 at 1:10 pm

      Hi Carol, i have had several of the sudden paralysis episodes-but as i said i am totally paralyzed when they happen. in my opinion you need to get him to the er now! a stroke is a possibility. Please know that You and Norb are in my Prayers and thoughts. Keep us updated when you can. Big Hugs!!!

    • Dawn Kevies mom
      April 12, 2007 at 1:24 pm

      Hi Carol,
      I am so sorry to hear about Norb. He is a very kind man that has helped me with my questions several times. I will pray for a quick diagnosis and a quick recovery. I will also pray that you keep your stregnth! Dawn, Kevie’s mom:o

    • Anonymous
      April 12, 2007 at 3:08 pm

      Hi Carol – I’m sending you and Norb hugs and prayers, too! But, as everyone has said, PLEASE don’t wait for an appointment – the sooner he is seen, the better. As for the CIDP symptoms – when I start them, I go FAST! One day I can walk all over, lift things, and am steady on my feet. The next day I can have just a slight unsteadiness – and 3-5 days later I can’t get up without help, can’t lift a tea cup, open a bottle, I shuffle along (if I can walk at all), and am so unsteady that I have to use forearm crutches or a wheelchair. I am learning that when that first symptom shows up I need to call my neuro and my infusion place (they know me now!) and get in ASAP for IVIG. I’ve also noticed that while most of my weakness is on both sides, lately my left side is not quite as strong as my right. Hope this helps – hang in there, girl! Good luck and good health!

    • Anonymous
      April 12, 2007 at 3:46 pm

      Carol ~ [I]thank you [/I][I]so much [/I]for sharing this turn of events with us. You and Norb have just returned from a huge trip and that may have exacerbated things [I]but[/I] he needs to see a doc, asap, as others have said. Whatever this is, he needs medical assistance.

      Please know that Richard and I will keep you all in our prayer thoughts. Many hugs.

    • Anonymous
      April 12, 2007 at 5:58 pm

      Carol,

      I just returned from a trip and read your post about Norb’s problems. Please let him know that both of you are in my prayers and thoughts. Norb keeps such a positive attitude that he’s an inspiration for all of us.

      Best wishes,

      Suzanne

    • Anonymous
      April 12, 2007 at 6:13 pm

      Carol,

      I hope you have seen my post on the English Forum.
      Give Norbert as big a hug as he can take from me! He is a special friend to me not only because we suffer from the same disease.

    • Anonymous
      April 12, 2007 at 6:42 pm

      Dearest Carol,

      Know that you are not alone.We are all praying for a speedy
      recovery for Norb and strength for you.

      Pallas.

    • Anonymous
      April 13, 2007 at 6:40 am

      Carol, Thanks for letting us know about Norb. I am sorry to hear what has happened. But do know that we are all here for you all and that you and Norb and family are all in our prayers and thoughts. Do get back to us and let us know how he’s doing and what you do find out at the Dr’s Best of luck and God bless you all.

    • Anonymous
      April 13, 2007 at 12:36 pm

      Hi everyone. Here is an update on Norb’s condition. He went to the ER on Thursday morning. The weakness on his left side and his worsening condition does not seem related to the CIDP, except that his walking problems may have caused him to fall and hit his head several times during the past two months.

      He was diagnosed with a very large subdural hematoma, that is a bruise or a pool of blood on his brain. It is large enough to be compressing the right side of his brain and causing a brain midline shift.

      In addition, he has a atrial heart flutter causing a low pulse and arrhythmia. The docs have delayed operating on his head and have reduced his heart medicine (beta blocker) to help his rate return to the 40-50 range. It was in the 30’s, a rate too low, especially for surgery.

      Today his atrial flutter has improved and he will have neurosurgery to relieve the pressure on the brain. For now, they will simply drain the blood but not remove the sack surrounding it. This is less invasive and less likely to result in seizures or infection.

      It will take some time for his brain to regain its normal position, perhaps 1 to 2 months or more. He may or may not have immediate improvement of his left arm and leg functions but rehab. therapy should help with that over time.

      He wants you to know that he appreciates all of your emails, prayers, and expressions of concern, as do I. Thank you for your kindness and support.

      Sincerely, Carol & Norb

    • Anonymous
      April 13, 2007 at 12:55 pm

      Thank you Carol for that update.

    • Anonymous
      April 13, 2007 at 1:27 pm

      Glad to hear you have a diagnosis and plan of action. I’m adding my prayers for a complete recovery for Norb and strength for you!

      Leanne

    • Anonymous
      April 13, 2007 at 2:00 pm

      Thank you for taking the time to give us an update. Please know that you ~ Carol, Norb and your family, will be remembered in Richard’s and my prayers. Love and hugs 🙂

    • Anonymous
      April 13, 2007 at 2:25 pm

      Thank you Carol for letting us know how Norb is doing. I will be praying for him and some hugs going out to you.

    • Anonymous
      April 13, 2007 at 3:51 pm

      Thanks Carol, Tell Norb Hi. Please accept our prayers and love for you two.

    • Anonymous
      April 13, 2007 at 4:43 pm

      Thanks Carol for the update. Tell Norb to listen to any instruction the DR gives him.

      Sue

    • Anonymous
      April 13, 2007 at 7:57 pm

      my thoughts are with you
      a thoughtful and kind hearted individual
      I was missing his insightful words

    • Anonymous
      April 13, 2007 at 11:12 pm

      Thank You very much for the update on Norb, Carol. Please give him a Big Hug for Me. I really miss his postings and talk about Sydney. Please take good care of yourself and get plenty of rest, that would help Norb relax just knowing you are ok. You All are in my Thoughts and Prayers.

    • Anonymous
      April 14, 2007 at 2:02 pm

      Hello everyone! Norb’s surgery was brief and there were no complications. Today his left arm and leg strength are much better. He was out of bed briefly and walking with his Ferrari telling everyone that “the tube in his head helped him communicate with his people on Mars”.

      This afternoon, the neurosurgeon removed the tube and said he could go home unless the internal medicine doc wanted to keep him for other reasons. All the time we were in the hospital, our great son-in-law was busy building a wheelchair (or rollator) ramp for us in the garage and you all were busy sending your greetings and best wishes. What great and kind family and friends we have! We are truly blessed! Thank you all for you wonderful support over the past few days. It really helped.

      Since Norb is already back to his witty self again, I’m sure he will return to the forum within a day or two. Thank you all again and take care. Warmly, Carol & Norb

    • Anonymous
      April 14, 2007 at 2:09 pm

      Hallelujah! Prayers for a quick recovery and hugs continue to be with you 🙂

    • Anonymous
      April 14, 2007 at 2:43 pm

      Hello Carol,
      As you can see by the responses, our family here is your family too. Norb has helped so many of us and that does include me, by doing and just saying things. When we notice that one of our family is not posting, we worry and we wait for words from them. Please do try to keep Norbs family here updated.

      [IMG]http://img404.imageshack.us/img404/4995/pray4youwy7.jpg[/IMG]

    • Anonymous
      April 14, 2007 at 2:46 pm

      Hi Carol,

      I am so happy to hear that Norb is back to his old self again. Can’t wait to get him back on the forums.

      Many hugs to both of you.:)

    • Anonymous
      April 14, 2007 at 2:49 pm

      Hello Carol,
      I just re-read the posts and saw that all went well with Norbs surgery. Take the time now to let out that sigh of relief.
      Liz

      Our chain of prayers can help.

    • Anonymous
      April 14, 2007 at 3:13 pm

      I’m so happy for you and relieved to hear that dear Norb is back from hospital. Give him a big hug from me!

    • Anonymous
      April 14, 2007 at 6:55 pm

      Hey Carol – just adding how happy I am that Norb is doing so well. Sending a cyber hug to both of you. Good luck and good health!

    • Dawn Kevies mom
      April 14, 2007 at 8:30 pm

      Hi Norb! I’m glad you are O.K.! Have a speedy recovery, and no wheelies on your Ferrari as you call it down your slick new ramp! Dawn:o

    • Anonymous
      April 14, 2007 at 9:29 pm

      Carol and Norb,
      I havn’t been here in a few days and just have read of Norbs problems. Surely an thankful for his recouperation. Will be praying for complete healing. Glad to hear he is doing so well so quickly.:)
      Mary Ann

    • Anonymous
      April 15, 2007 at 12:17 am

      Carol and Norb I might of been the last one to find out that Norb received surgery. But after reading all the post that were so possitive and showed true concern I am at a loss of words. Not that I did not expect any less from this group but the posts were absolutely beautiful. I am so glad that Norb is doing better. Carol you are one of the people in our lives that post to this forum to let us know that things are ok. But I have to let you know without caregivers like you and the rest of our support group here these boards would not be the same. The possitive attitudes gave me gave me a bright outlook for this weekend….even if the skys are grey! Nice going family! I am so proud of all of you! Continue to get better Norb! :p

    • Anonymous
      April 15, 2007 at 3:07 am

      Norb,

      You work on getting better. I have been ofline for my own struggles, but yours is a big one.

      I’ll keep you in my thoughts and hope for a positive outcome for you. Your attitude should be the best medicine in the world.

      Hang in there.

      Dick S

    • Anonymous
      April 15, 2007 at 3:41 am

      What great news carol, i’m sooo relieved to hear norb’s surgery(martian device implant:D ) was successful! Please give him a BIG HUG for me, and one to your wonderful son-in-law also. norb is truly blessed to have such a fantastic wife and family. i’ll be anxiously waiting to communicate with that crazy martian!!!:D Thank you very much for keeping us updated Carol, now i can go get some restful sleep knowing norb is back home in your caring arms again. Take care.

    • herself
      April 15, 2007 at 9:04 am

      So glad to here all getting better on your end. The two of you with your attitude ,humor and strength are an inspiration to the rest of us. Carol, be sure to take care of yourself too.

    • Anonymous
      April 15, 2007 at 10:45 am

      I don’t have adequate words to tell you all how much I appreciate all your posts and `was `allowed to experience first hand what a wonderful family I have.
      I am out of bed for the first time this sunday morning sitting in a chair next to it. My thinking is a bit hazy probably from the Vicodent. Carol went home last night to get some well-deserved sleep. The drain tube came out yesterday and all that is left is the dressing over the 1/2 inch burr-hole. 😮 I still have not looked at myself in a mirror. Tomorrow I will meet with the cardiologist to discuss ways to correct the atrial flutter in my heart. If left untreated it may lead to a stroke some day. It’s basically an electrical problem that can be corrected by applying a small electrical shock, kind of a heart tune-up. I’ve been on a heart monitor the entire time here which showed that eliminating the betablocker did not solve the problem. The whole incident, the trip to Thailand with the fall and the hematoma was really a blessing in disguise. Without that the problem with my heart would probably not have been discovered. Listening to my heart with a stethoscope does not show anything abnormal.

      I have some other thoughts to share but that has to wait. I am fizzling out and need to call the nurse nto help me get back into bed.

      Take care all

    • Anonymous
      April 15, 2007 at 11:46 am

      Norb you behave yourself-but not too much!:D please get plenty of rest, you need it. Big Hugs!!! and don’t worry about your looks-you haven’t changed at all! please no more falls young man!!!:D get some rest and take care.

    • Anonymous
      April 15, 2007 at 12:14 pm

      Norb! What a wonderful Sunday surprize to find your post today! So very in character for you to find the silver lining inside the rain cloud.

      As with the rest of your “family” here, I’ve been very concerned to hear about your medical problems, and have be praying for your safe recovery.
      Many thanks to Carol for keeping us updated on your progress – I’m sure she’s had her hands full, and yet made time to let us know how your were doing.

      Stay well, and best wishes for your continued progress.

      Suzanne

    • Anonymous
      April 16, 2007 at 9:38 am

      I’m really happy for you and your family. I can’t imagine how scared ya’ll all were not knowing if it was cidp, stroke or what.

      Take care.
      Lori

    • Anonymous
      April 16, 2007 at 9:43 am

      So glad that everything went well. Hopefully it will continue. Does Norb have headaches now from his injury? I wish you the very best and I will continue to pray for you all. Take care and be well.

    • Anonymous
      April 16, 2007 at 9:43 am

      So glad that everything went well. Hopefully it will continue. Does Norb have headaches now from his injury? I wish you the very best and I will continue to pray for you all. Take care and be well.

    • Anonymous
      April 16, 2007 at 9:43 am

      So glad that everything went well. Hopefully it will continue. Does Norb have headaches now from his injury? I wish you the very best and I will continue to pray for you all. Take care and be well.

    • Anonymous
      April 16, 2007 at 4:40 pm

      OK Norb ~ whatcha up to this day?? Hugs 🙂

    • Anonymous
      April 16, 2007 at 5:05 pm

      Great to hear from Norb my Dad had the same problem he got a pacemaker put in in January. He was having problem with his heart for many years and they notice with the box on him that his heart would stop 12 times in a day. Now we don’t have to worry anymore because his heart won’t go back to 30 beats per minute. It keeps it above 60 beats per minute.

      Sue

    • Anonymous
      April 16, 2007 at 8:10 pm

      Norb!

      I havent been on the forum for about a day, what a wonderful surprise to see you posting! We all have been so worried for both you and Carol. Keep on getting better by the minute 😀

    • Anonymous
      April 16, 2007 at 9:44 pm

      Norb, was to glad to see your words

    • Anonymous
      April 16, 2007 at 10:13 pm

      So glad things are going better ! Take it slow and dont push too hard. I always look for your posts…you are so encouraging and full of information !
      And a definite inspiration.
      God speed to you for a quick recovery !!!!

      cyber hug,

      Stacey

    • Anonymous
      April 18, 2007 at 6:58 pm

      Yikes! I’ve been away too long!

      Norb,
      I’m so glad to hear that this was something an operation was able to fix and that you are on the road to recovery. God bless Carol for getting you the medical attention you needed.

      Looking forward to more good news as you progress,

      cd

    • Anonymous
      April 19, 2007 at 12:05 pm

      I finally figured out how to email photos taken with our cell phone to myself. A bit late but here it is:

      [IMG]http://www.bluemarble.de/forum/surgery.jpg[/IMG] [IMG]http://www.bluemarble.de/forum/brainscan.jpg[/IMG]

      [B]Sue[/B], I had nothing to eat since midnight and was waiting for the cardiologist in the morning to show up for the cardioconversion to correct the atrial flutter. He never showed up. Instead, the hospitalist 😀 , an internal medicine doc, told me they weren’t going to do it and I could have breakfast. She said since they didn’t know how long I’ve had it doing the conversion may actually do damage. Very confusing. I decided not to go into PT right away because of the excruciating pain in my knee. Everybody tried to convince me otherwise but I finally put my foot down. Instead, I said i was tired of being in the hospital and got discharged after a long wait. I will do the physical therapy after I’ve seen the orthopedic specialist tomorrow. most likely he’ll do an MRI.

      Tomorrow I’ll also get another CT scan of my brain. Hopefully the bleeding has stopped and my brain is starting to move back to the place where it belongs. 😀 Staples will come out next week. The symptoms that brought me to the ER seem to be gone. There is no longer a difference between left and right side and I can push myself up off the couch with some effort using both arms. The difficulty is to differentiate the effects of the hemorrhage from CIDP symptoms which appeared to have masked the brain problem. But this morning I was able to pick up even the tiniest pills off a small plate Carol had set out for me with my morning medications. I havn’t been able to do this for many months. Hurray.

      [B]Dawn[/B], I only started getting headaches some time after the fall when I hit my head against the bedframe trying to go to the bathroom. They were relatively mild, maybe a 2 on a scale of 1 to 10. Of course, after the operation I had headaches, too. But they were just around the area of the hole they drilled and lasted only a few days.

      They told me at the hospital I was a lucky man because the hemorrrhage was discovered before it was too late.

      Thanks again for all the hugs and words.

    • Dawn Kevies mom
      April 19, 2007 at 12:31 pm

      Hey Norb I’m so glad you are better! Dawn Kevies mom! 😮

    • Anonymous
      April 19, 2007 at 3:04 pm

      Norb,

      It’s so good to hear from you, we were all worried about you.

      I’ll keep up my prayers for you and sending big hugs again.

      ((((((((((Hugs)))))))))) ((((((((((Hugs))))))))))

    • Anonymous
      April 19, 2007 at 5:36 pm

      So glad to hear from you Norb. We were all worried about you. I know my Dad got his pacemaker surgery delayed twice the third day they did it. Just keep an eye on your pulse. My Dad would check his pulse when he felt crappy and if it was below 40 or so he would keep a closer eye on it then when it got lower around 32 bpm he would call a taxi and go to the hospital. It happen a couple times a year.
      So take Care of yourself and put your foot down as often as you need to.

      Sue

    • Anonymous
      April 19, 2007 at 9:56 pm

      Norb,

      In the words of Billy Crystal,

      “You look marvelous!”

      cd

    • Anonymous
      April 19, 2007 at 11:36 pm

      Hello Norb,
      We can all breath easier now. It “IS” wonderful to see and hear that you are okay. You are doing better then I am. I have to shake a pill out of bottle into my hand then put it in my mouth palm up. I can’t pick up a pill. If it falls on floor it’s gone.

      Welcome back, take care of yourself now.

    • Anonymous
      April 20, 2007 at 12:43 am

      Norb, All I can say is….OUCH!!! Your booboo gives me a headache! You are one Lucky Young Man!!! Are You behaving? and Why?!:D oh and Who’s your designer?:D glad to see your looking good, and acting your self, now if we can only get you mobile without the falls! boy what you won’t do to get out of housework!;) miss ya man! get feeling better, we want to see some more pics of that sweet grandbabe of yours! i’m sure she needs to give her opa some Big Hugs too. Give that sweet and wonderful wife of yours a Big Hug and Hello for me. Take Care!:)

    • Anonymous
      April 20, 2007 at 8:12 am

      Norb, my heart really goes out to you. The things you go through! How hard it must be for Carol! I am happy that you are better again 🙂

      My husband has had constant arterial flutter for so long before it was discovered (at least 2 years) that it has been decided not to try and change the rhythm back to normal. The chances for the heart to return to arterial flutter is to high, and the side effects of the accompanying pill would mean that my husband should stay out of the sun. He did not like that aspect 🙂 My husband has decided to live with it, though it is a new area for us to research regarding the illness, tiredness, pills and side effects. My husband has joined a group discussinig arterial flutter at the Danish Heart Association where he learns a lot.

      Thank you for still being there, Norb.

    • Anonymous
      April 20, 2007 at 11:42 pm

      Hi Norb,

      Good to know you’re doing much better.
      I’m on my way to Kathmandu to find the book store. Remember?
      Well, I just finished my crash course in Hindi. I hope you’re up and
      going soon.

      Pallas.

    • Anonymous
      April 21, 2007 at 11:19 am

      [QUOTE=Pallas]I’m on my way to Kathmandu to find the book store. Remember?
      Pallas.[/QUOTE]
      Lucky you. The bookstore is on the main road between Thamel and Kathmandu. If you are interested in beautiful Tibetan rugs, ask about the Tibetan refugee place. You can watch them made there by Tibetan women. The rugs role up into incredible small packages. We brought back two. And don’t forget to see Boudha with its beautiful stupa, an incredible experience. Hundreds of Tibetans walking around it all day twirling their prayer wheels. … and on and on.
      Here is a link to our Kathmandu story: [url]http://www.bluemarble.de/New_Journey/2_Tiisong/Katmandu/katmandu.html[/url]
      Have a great trip

    • Anonymous
      April 21, 2007 at 2:19 pm

      Good news. Had my follow-up brain CT scan yesterday. The 3 1/2 ” x 3 ” hemmorrhage had shrunk to a black spot 1/20 its original size when we looked at the pictures at home. The brain compressed by the hematoma has mostly [PHP][/PHP]returned to its original position. Except the totally black spot worried us quite a bit. We thought it was possibly fresh blood. But the neurosurgeon’s office called us later to tell us that it looked perfect and the black spot was just air.
      My daughter wants to use my case study for a presentation to medical students. One interesting point she wants to make is how CIDP symptoms can mask the symptoms caused by the pressure of the hematoma on the brain. It took us a while to realize that the increase in weakness and numbness was on the left side of my body while CIDP symptoms are symmetrical.

    • Anonymous
      April 21, 2007 at 5:24 pm

      That is FABULOUS news Norb!! Many prayers have been answered!!

    • Anonymous
      April 21, 2007 at 8:54 pm

      Norb I am so happy to hear your doing better, you sure have been through alot. We miss you around here. Get well, you are in my thoughts and prayers.

      Jerimy