Good news and Bad news

    • Anonymous
      August 2, 2007 at 11:09 pm

      The good news- my NCV showed great improvement in almost all nerves although they where all still delayed. The bad news- My right peroneal nerve(lower leg) still had no improvement in 5 months. Well this explains the R foot drop/drag in the pm when I’m tired. The neuro said this nerve takes longest to recover and it may still improve. My internist is more pessimistic and I have a bad feeling about this. He is going to try an ankle/foot brace to see if this will decrease the weakness/pain in the evening. Keep it from having to work so hard all day. Does anyone have any experience with this. He is also going to try neurontin at bedtime to help with the pain in that leg. I asked him because so many of you had success with this med.
      I’m going to increase to 5 days a week about 6-7 hours a day and I’m being force to take call again or loose my hospital privaliges. I really don’t want to work this much but I have to do it or quit. I’m so hopeing for increasing strength to withstand this challenge. The marathon continues. I have done some soul searching and I really want to keep my practice. When I decide to quit 2 weeks ago and I didn’t go to work for one day I felt so defeated/lost. So, I decide to stick it out for now. I just want to thank everyone for your encouragement/stories/advise. I really don’t think I would be so patient/accepting if it weren’t for this forum. By the way, the lawyer said I have an excellent case but he would wait to the one year mark to see where my baseline is before I start the process. It was really therapeutic to go to his office and hear that I am justified. But, now I have a peace about it and I doubt I will go through with it now that I just know I could. Weird hugh? Shawn

    • Anonymous
      August 2, 2007 at 11:54 pm

      I too, had a “great case” as far as the lawyer was concerned ~ but ~ he was upfront honest that it would cost approx. $80,000 to pursue it and the chances of a positive outcome were about 8 – 10%. Medical malpractice is usually difficult to prove (even with a death!) and very time consuming. And of course, if you are not successful, then the cost is out of your pocket. Yes, I was very angry for a long time! but it certainly did not help with my healing process.

      Dr. Shawn ~ my advice? [I]Don’t[/I] listen to the pessimists! No one knows for sure how much you will heal and in what time frame. I am 12+ years post and still finding little unexpected improvements ๐Ÿ™‚ I was told that I wouldn’t live past the 5 year mark ~ how’s that for pessimism?! Neurontin at bedtime made a huge difference for me. It’s rare that I take it at other times. Good luck.

    • Anonymous
      August 3, 2007 at 9:32 am

      Dr. Shawn, AFO is good, make sure you get a comfortable one, it will make it better for you. I’m praying for you, keep your positive attitude going. You can do it!!!:)

    • August 3, 2007 at 11:24 pm

      Hi Shawn,
      Bet you didn’t even realize this, you sign your name as just Shawn now, I think you finally feel comfortable with the people on the forum. I am happy you have somewhere to turn. I think it is probably a good decision that you are giving the practice another try since you have wrestled with the decision back and forth. If you are able to make a go of it, how wonderful that would be, if not, you went into it with your all and tried your best. Either way, it seems like a win win decision. You will never have to worry about what if, and you will never have to worry about regretting your decision. The power of choice will be in your hands at the end of the day. They are very confident, caring, conciencious hands at that. You should be proud of yourself for your determination.

      Regarding the ankle braces, Kevie wore ankle supports for about three months, they aided him tremendously by cutting his sprained ankles by at least half. I also think that the extra support helped him to gain confidence in his walking, which in turn seemed to relax him a bit when he walked. When his walking was more relaxed, his back pain plagued him less, and his stiffness in the neck seemed to ease as well, which seemed to ease his daily headaches.

      Today, he did complain of an unusual stabbing pain in his back, just a tiny bit above the coxcyx. It seems to come sporadically, I cannot get him to explain to me if it is a spasm or a jab. I was wondering, if it was a pinched nerve, would the pain be constant, or sporadic? Whould it be painful when walking or bending? Because he is not really complaining about walking, we were even swimming and he was climbing up the ladder and diving, it would just sporadically be a shooting pain. I gave him aleve for inflamation and tylenol extra stregnth for pain and we are going to take it easy tommorrow. Any other suggestions? Do you think pulled muscle, pinched nerve, healing from gbs?

      Good luck at work next week and I will say a prayer for you so that it is an easy week! Keep up the awesome attitude!

      Dawn Kevies mom ๐Ÿ˜ฎ

    • Anonymous
      August 4, 2007 at 2:31 am

      Hello! This is Mrs Greene—first time posting. Please stay optimistic. Do not let scary opinions or predictions get you down. Gene beat the odds and stunned his doctors, nurses and may I add, the whole neighborhood! I kept the faith—partly because I love my husband so much that I could not imagine losing him—and partly because I know faith can move mountains. ๐Ÿ™‚
      Quote from Judi Z:
      Dr. Shawn ~ my advice? [I]Don’t[/I] listen to the pessimists! No one knows for sure how much you will heal and in what time frame. I am 12+ years post and still finding little unexpected improvements ๐Ÿ™‚ I was told that I wouldn’t live past the 5 year mark ~ how’s that for pessimism?! Neurontin at bedtime made a huge difference for me. It’s rare that I take it at other times. Good luck.[/QUOTE]

    • Anonymous
      August 4, 2007 at 9:30 am

      Judi, He said he would set it up for one of his friends to but take the case and only collect if we won. Sounds fishy to me. He felt very strongly about the case. Even had his internist/lawyer partner listen in. He does medical liability only but will not sue in his hometown. He said he had to have this restriction in order to insure he would has doctor care/emergency care here if his family needed it. Makes sense. But, for now I’m leaning against suing. For all the reason you stated and more. I will try to keep hope and I agree 7 months is too eary to judge progress but it doesn’t prevent worry.
      Dawn, I really appreciate your continued support. I suspect Kevin’s pain is muscle spasm. It would be very unusual for someone his age to have a pinched nerve. I suspect he overdid at the swimming pool. I would give it a few days on Ibuprofen/tylenol and a heating pad when it flares up. If it doesn’t respond to rest then may need to check it out with his doctor.
      Mrs Green, So glad you posted! I really appreciate all Gene’s help. He is so knowledgeable/helpful and an inspiration. I know the stress my husband has gone through and I really admire the fact that our support structures have stood with us. Please keep posting!
      Tried the neurontin 100 mg at bed last night. Made me sleepy so I couldn’t really take it early afternoon when the pain starts but really worked last night. The pain eased down about 30 minutes after taking and I slept good. Except for a 5 y/o waking me twice and a 20 month old waking me once. Should have tried it sooner. I have just been stubborn. Ironic, a doctor who doesn’t like to take meds. Shawn

    • Anonymous
      August 4, 2007 at 9:33 am

      Cheryl, I’m getting measured Monday for the AFO. Any advise on which brands./types to request. Thank you for the prayers. You are always so encouraging. Thank you, Shawn

    • Anonymous
      August 4, 2007 at 9:36 pm

      [COLOR=black]Dr. Shawn,[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Gabapentin is known to make people really drowsy initially. The effect tends to reduce with usage. If you have to up the dose or change the time, the drowsiness can increase temporarily. By the way, 100 mg is considered a small dose. I cannot even get it in less than 300 mg tablets (source issues, but my health plan’s pharmacy considers 300 mg the smallest useful dose).[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Was it fast-acting for you? I ask because it is not for me. I try to make sure that I have a dose at least a couple of hours before bed. It really helps by bedtime. I don’t take it more than 4 hours before bed, because the half-life (serum, I think) is 5 to 6 hours, and I want to be asleep before it wears off.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]On keeping your practice, I understand your desire not to give it up. I love my job (analytical chemist) and I just cannot imagine not working. Still, I have to ask my colleagues to help pick up the slack. They are a gracious bunch and have willingly agreed. I don’t know how LLC’s or LLP’s are set up, but is there some way for you to force your partners to buy you out? I ask not because I think you should give up your practice, but because your partners seem to be heartless. Could you not set up your own practice or buy into a more caring group? I have an optometrist friend who was rendered quadriplegic in a car accident just as he was setting up his practice. He gets a subsidy from the state so that he can continue. Maybe that would be an option for you?[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Please think about this anecdote; it has helped me. An Air Force general that I am acquainted with was having a very hard time with the acquisition program she was managing. She called her mother and said that she was thinking of quitting the program. Her mother told her, “Never give up, never quit; make them fire you.” The general said she decided that she would do the best job she could, accepting the restraints in her life, and let others decide it if it was good enough. If it was not, at least she gave it her very best shot.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Godspeed your recovery and let’s hope your partners become more accommodating soon.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]MarkEns[/COLOR]

    • Anonymous
      August 4, 2007 at 10:24 pm

      Markens,
      Last pm was my 1st try on neurontin 100mg and it wiped me but it really was great because I could relax to sleep. The pain got better in 30 -60 min but my legs still ached. It is also hard to relax with the paresthesias (worse at night) . The neurontin didn’t really change this but I did fall asleep very easily. My patients do get less drowsy after taking for a while. But I plan on taking at night only. I weight 120 lbs and my md said he was going to give me the old people dose- thank goodness- I would have really zonked.
      My practice is a LLC(limited liability corp) and our buy in /out is only 10,000 so easy to get in/out. But, I also own the property/building and that is the real value. I own it with my father, and another partner(his best friend)- all md’s.They of course have been supportive and voted to let me stay 50 % overhead. But, The other 3 partners would not so it reverts to previous 100% since it is a tie. They have been offered a buy in but refuse. So they pay us rent(actually profitable for me). I have a lot invested! Not easy to walk out of this part. Also after figuring what I can hopefully do- I can still make better eventually staying than I would working somewhere else. Truly I’m really not employable- I have looked around. For now I’m stuck but I am keeping my options open. With no contract or boss I can leave any time.
      What so you do as a chemical analyst? Pharmaceuticals/ Research/commercial?
      Thank you for your help! Shawn

    • Anonymous
      August 4, 2007 at 10:26 pm

      Oh, I could refuse to rent to them(partners). But, that would be not so smart for me since they would no longer pay me rent and no longer pay their overhead.Shawn

    • Anonymous
      August 5, 2007 at 1:23 am

      Dr Shawn, Herself(Pattie) has an afo that looks really comfy from what I saw of it on their website, Toe Off Brand. You might want to pm her, i’m sure she will answer your questions. I couldn’t get any back a few months(before aqua therapy) because I had enough problems with walking, knees and weakness, that my physio dr said he wanted to wait abit before getting any. and now since i’m walking without my cane when possible, i don’t want to have to depend on any devices—i enjoy my freedom and i would have to get use to walking on something different under my feet–i hate shoes as it is in the summertime!!;) Take Care.

    • Anonymous
      August 5, 2007 at 5:33 pm

      Thankyou. I will see what my options are Monday. If it bugs me too much it won’t be worth it. Shawn

    • Anonymous
      August 8, 2007 at 1:31 am

      My dad was a doctor for almost 50 years. Later in life he started working part time through a major hospital and was paid well. He loved being a doctor-he said he never felt so happy as when he was working.
      He had doctor friends who had great disability packages and enjoyed long exciting trips everywhere. Some worked parttime on cruise ships. I don’t understand why your partners won’t work it out. You get paid for what you do-not expecting the usual payment like working fulltime. Keep your license current till you did feel able enough to return full time or found something else.There are doctors who never step foot in a hospital today-they close down their offices at 5:00 PM sharp and go home. Seems a shame with all the medical schooling not to work in the field you’ve trained so hard for.Maybe you live in a small town with less options. The county health services always needs good helpers-volunteering or other wise.Good luck.
      Lawsuits are iffy. My family went after the hospital that tried it’s hardest to kill me. The attorneys wanted the easy cases-I was told repeatedly that a lawsuit costs $ 25,000 for basic research. I even offered to pay this as I too wanted my due. Finally I told my family I was too tired and they could go ahead without me. No lawsuit.Getting a law firm out of state sometimes is best-that way there’s no repercussions as to being denied health care in your town.

    • Anonymous
      August 9, 2007 at 10:22 pm

      Good advise. Thanks, Shawn

    • Ron
      February 25, 2017 at 10:53 am

      Hi I’m in the medical field and was
      Dx with axonal GBS July 2015. I spent
      two weeks in the hospital and had seven
      rounds of PE. I was moved to acute rehabilitation for one month and followed by six weeks of subacute rehabilitation. I came home in late
      October using a walker,AFO’s and wrist braces. I still needed help with my basic needs but being home gave me motivation. After a few weeks my visiting PT suggested outpatient therapy but I didn’t want to go with the walker.
      My motivation stepped up and I started walking without my walker. I would go outside to my backyard and walk around and go to the mall and restaurants with my wife and daughter. With this being the winter I could hide the wrist braces but when the spring came I began to feel discouraged about my hands. I tried very hard working with OT to strengthen my upper body and arms. My OT said that this would make its way into my hands and by late summer 2016 I was riding my bike after noticing movement in my wrist. I stopped using the wrist braces and began concentrating on my foot drop so I stopped the AFO’s and my PT started me on the treadmill. I worked on improving my gait and heal to toe walking. This brought me through fall and winter of 2016. I’m still waiting for my recovery to come back to my hands and I feel like it is going to. I can move my fingers and straighten my thumb and index fingers. I gotten back a lot of my independence, I drive and shop on by myself. I still have numbness in my big toes and my walking is improving. I have not returned to work completely, only twice a week. I go to therapy three times a week and look forward to working out with patients who have different experiences. I hope to hear from those in the forum who have been dealing with axonal GBS for years and to get updates on where they are now.
      Ron

    • GH
      February 25, 2017 at 3:37 pm

      You should have started a new thread for this. We don’t have a moderator who can move posts around.

    • February 25, 2017 at 6:40 pm

      Hi Ron, as GH observed, you have posted in the wrong forum thread. Please feel free to jump in on our AMAN discussions here:
      https://forum.gbs-cidp.org/topic/axonal-guillan-barre-aman