• April 11, 2011 at 11:06 am

      How come I have been diagnosed with CIDP but not GBS. My symptoms came on about 10 days after receiving my flu vaccine. It started with a numb foot but I did not progress to anything else at first. It took a few more weeks to start to have sore muscles in my calves and a shakey feeling in my hands and a little weakness in both hands too. Would it have been diagnosed as GBS if it came on much quicker than over a few weeks. I always thought CIDP took months and months to show up and GBS showed up right away. My numb foot showed up about 6-10 days post the vaccine. I was just wondering that is all. I still have not progressed much past some pain in my legs and weird feelings in my legs when trying to fall asleep, some twitching of my body at night too and mild weakness in my hands (but it doesn’t affect my daily stuff – only if i do prolonged work). Is there a possibility with CIDP that it could stay mild like this and not progress to be like most of the people have on this forum? My neurologist said not to freak out too much because for every person on this forum that has horrible symptoms and isn’t getting better there are hundreds of people living with CIDP and not having problems so they do not visit the forums and post. That is why it seems everyone has such horrible symptoms and no one has mild. She said people who have mild symptoms you never hear from them so you don’t ever know about them. She said I am new to the disease so that is why I am searching out the web. Are there any people on this forum that have lived with CIDP and are not having horrible symptoms. I would love to hear from them to give me some encouragement that just maybe I won’t go down the road of horrible symptoms. Just maybe I can live with this at this mild level. Hope is a good thinig to help you move on. Right now I am dwelling on the fact that I have this and thinking of the worst. What if I get worse, will i lose my joB? Will i lose the ability to drive? Will i not be able to care for my 7 year old daughter? How will my husband handle being married to a disabled person? Will our marriage survive this disease? Help, i am driving myself crazy!!!

    • Anonymous
      April 11, 2011 at 11:33 am

      Your neuro is so right about those who are doing really well with their CIDP not coming to any forums. It’s just like the product reviews we read on the internet, more likely to hear from those who had a bad experience, than from those who love the product. And he is probably right on his numbers as well, so I do believe you should be happy that you seem to have a milder form & go on living your life. Definitely keep seeing your doctor & getting treatments, but think about your symptoms at this point as “mild annoyances.” Best of luck to you in doing so…

    • Anonymous
      April 11, 2011 at 11:53 am

      The differences, as I read about them, seem to focus on a determination of the rapidity, acuteness (right now) and duration of the symptoms. Read about this from Johns Hopkins-

      GBS patients develop rapidly progressive sensory symptoms such as unusual sensations (paresthesias) and numbness, and motor symptoms such as weakness and cramping in their legs followed by their arms. Patients may also develop weakness of their breathing and difficulty chewing and swallowing. Difficulty breathing may create a neurological emergency as the patients can develop respiratory arrest. A sizeable number of patients also develop autonomic dysfunction where they experience fluctuations in their blood pressure and cardiac arrhythmias. GBS is one of the true neurological emergencies. Patients need to be monitored closely during the initial acute phase of the illness. In contrast, CIDP is a slowly progressive illness with diffuse sensory and motor symptoms.[/I]

      From Neurology. 2010 May 25;74(21):1680-6. Epub 2010 Apr 28.

      “[I]CONCLUSIONS: The diagnosis of acute-onset chronic inflammatory demyelinating polyneuropathy (CIDP) should be considered when a patient thought to have Guillain-Barré syndrome deteriorates again after 8 weeks from onset or when deterioration occurs 3 times or more. Especially when the patient remains able to walk independently and has no cranial nerve dysfunction or electrophysiologic features likely to be compatible with CIDP, maintenance treatment for CIDP should be considered.[/I]”

      So, it would seem, you may very well have Acute (right now) symptoms and be diagnosed with CIDP, not GBS due to the symptoms lasting, or worsening after the 8 week period. I have read repeatedly that the 8 week number could be used as a guideline, or cut-off in decision making.

      Also, it sounds as if there are EMG/NCV differences. However, I do not know what those differences are.

    • Anonymous
      April 11, 2011 at 12:03 pm

      I believe there are at least three factors to anyone’s degree of horribleness. The first is how soon are you diagnosed and an effective treatment is started, and maintained, after diagnosis.

      The second is how bad the condition is in the first place. Is it acute and worsening, or mild and remitting, or is is just plain slow and stubborn and still deteriorating?

      Get diagnosed quickly, get treatment quickly and then live long and prosper.

      The third factor? It is your own personal perception of horribleness.

      I spent years bemoaning my terrible, horrible life. Not any more. That didn’t get me anywhere except further and further down hill. I’m worse off than some, better than a lot. For me, that’s mild.

    • April 11, 2011 at 6:18 pm

      I guess I can count my blessings that I was diagnosed and treatment started within 5 months of my first symptoms showing up. I am trying very hard now to just go on with normal life but pay attention to my limitations so that i do not exacerbate my condition. I also found out recently that I have what is called a bakers cyst on my left knee. I had really bad pain the night after my IVIG infusion in my left leg behind the knee. It was a really deep and persistant pain that I had for more than 24 hours. I finally called the IVIG after hours line and the doctor on call said I should go to the ER to make sure I did not have a blood clot in my leg (i guess this can be a side effect of IVIG). The ER did a ultrasound of my leg vein. They found two small baker cysts on the knee right where the pain is. So maybe the bad pain i have been experiencing lately in my left leg is not my CIDP but actually these cysts. I don’t know if that is a good thing or a bad thing. The cysts can be drained and removed if needed. I was worried the pain was a new symptom of my CIDP and thinking the IVIG was not helping because I had a new pain. But it is only in the left leg and not the right.

    • Anonymous
      April 12, 2011 at 11:32 am

      Have faith, there are many who have CIDP and live normal or near-normal, active lives. I am lucky. I am one of them. I work full-time as a trial attorney. I lift weights three times a week. I walk three times a week. I travel for business and pleasure. To outsiders, I look completely healthy.

      I do have pain in my arms, legs, hands, and (especially) feet. My left foot is completely numb, my right slightly less so. My hands tremor. I have to get infusions twice a month and take Lyrica daily. But I work hard to live as normally as I possibly can. I don’t know where this will all lead. I only know that I will fight as hard as I can for as long as I can to live a full life. So take heart.