Newly Diagnosed CIDP/ALS?

    • Anonymous
      July 17, 2006 at 9:33 pm

      Hi Everybody,

      I have been given a diagnosis of either CIDP or ALS. My case is complicated by my other health problems. I have Spina Bifida and I have been in a wheelchair for three years. I cannot have a spinal tap because of the problems in my lumbar spine. The docs at the Mayo Clinic saw something in the MRI of my brachial plexus that led them to believe I may have CIDP. I was so happy because prior to that I was told that I probably have ALS. My arms, hands, and shoulders are so weak that I have trouble doing almost everything. Some days I can do more than other days. My muscles have shrunk so much that my hands look like they belong to someone else. Has anyone else been diagnosed with something else other than CIDP? What about muscle weakness and atrophy? I just need some reassurance that I may have CIDP and not ALS. I am going to have IVIG therapy as soon as it is scheduled. The docs say that if my symptoms don’t get worse or if I improve while getting IVIG, then I don’t have ALS. If I get worse then I have ALS. Any thoughts?

    • Anonymous
      July 18, 2006 at 12:55 am

      Hello, cheryl and welcome to the site. I know it is difficult that you don’t have a definitive diagnosis. I have CIDP, and although we all share many symptoms, there are also differences. My major weakness for years was in my legs and feet. Now it seems my arms and hands want equal time. But like everyone, symptoms vary and some days are much better than others. I am sending positive thoughts your way and praying the IVIG will greatly improve your symptoms. I’m sure others will come on and share their experiences with you. You have found a great support system here. Please stay in touch and take care……Vicki.

    • Anonymous
      July 18, 2006 at 8:26 am

      Cheryl,

      I don’t have any specific advice, I just wanted to say welcome and I wish you the best. Please take care of yourself and keep posting.

      Jerimy

    • Anonymous
      July 18, 2006 at 4:18 pm

      Thank you both for your welcome and positive thoughts. Itis goodto know there are people who understand.

    • Anonymous
      July 18, 2006 at 7:56 pm

      Cheryl,
      I have C I D P and , they say that I also have M S. I have denied the M S, however, there is weakness in my sholders. That may be M S, it may not be. It may be C I D P striking in another place, it may not since I have never seen anyone on here with sholder involvement with C I D P. Even C I D P is different in different folks. But, neurological disorders have similarities also. We will pray for success with I V I G Cheryl, and we will be here for you when you need us. God bless you.
      Mary Ann

    • Anonymous
      July 18, 2006 at 11:39 pm

      Hi Cheryl,

      Your description of diagnosis sounded familar – I read about a similar senario here:

      (link deleted by administration)

      It’s located halfway down the page, titled “Multifocal inflammatory demyelinating neuropathy: a distinct clinical entity?”.

      Hope this helps put your mind at ease.

      cd

    • Anonymous
      July 19, 2006 at 12:13 pm

      [QUOTE=compactdisc]

      Hope this helps put your mind at ease.

      cd[/QUOTE]

      Thank you. The information did help me. 🙂

    • Anonymous
      July 21, 2006 at 12:36 am

      I was on 2 forearm crutches, had all over muscle weakness and severe pain.My shoulders and arms so weak I couldn’t even hold a newspaper. By nightfall I was on the sofa with my jaw hanging open-too tired and didn’t have enough strength to keep it closed.
      It was originally thought I had ALS because I was so ill-no one knew if I could be helped at this point.The second opinion neuro said it was definitely MS and Spinal Stenosis. After several tests and many IVIG it is CIDP.
      Good Luck. Neurological illnesses can be very similiar-time, testing and medication with improvement was my answer.
      Off my crutches most of the time””’

    • Anonymous
      July 21, 2006 at 12:54 am

      I was on 2 forearm crutches, had all over muscle weakness and severe pain.
      It was originally thought I had ALS because I was so ill-no one knew if I could be helped at this point.The second opinion neuro said it was definitely MS and Spinal Stenosis. After several tests and many IVIG it is CIDP.
      Good Luck. Neurological illnesses can be very similiar-time, testing and medication with improvement was my answer.
      Off the crutches””’

    • Anonymous
      July 21, 2006 at 7:58 am

      Cheryl,

      I would like to add my welcome. Sounds like your in the same boat as I. I was dx’ed in November with CIDP. I had a round of IVIG(5days) the week before Xmas. Felt as if I was getting stronger. Then on Jan 3 I had an attack of muscle spasms. I fell in the hallway and felt as if all the muscles in my body were gramping. I was taken to the ER and given a shot of Valium and some Gabapentin(generic Neurontin). I was released and went to see my Neuro. He set me up for another round of IVIG. This time I felt no change. I went again the end of February again no change. I was continuing to weaken. The neuro decided to forgo any further IVIG. He conducted another EMG and determined that I was indeed worsening. He sent me for a muscle biopsy. Then he started me on Steroids(Prednisone 60mg/day). The biopsy came back and there was no muscle inflammation. He told me to start weaning from the Prednisone and he wanted to get a second opinion before proceeding. I now have an appointment with Dr. Vinay Chaudhry of Johns Hopkins Hospital. I am hoping that he will be able to confirm a diagnosis and recommend treatment. I have only been on this forum for a short time and I have found it to be very informative. The support and camaraderie of the members is greatly appreciated. I hope that you find it as well. I pray that you find a treatment and a cure. Hang in there and keep the faith.

    • Anonymous
      July 21, 2006 at 4:31 pm

      rbtro

      What a coincidence — I too am from Annapolis/Arnold and I was just dxd with CIDP by Dr. C at Hopkins!! He’s very nice and thorough. Be prepared for a complete workup. I’m almost through my first IVIG treatment (day 3 of 4).

      Helen

    • Anonymous
      July 26, 2006 at 10:55 am

      Hello all, Just wanted to update on my trip to Dr. C at JHU. As Meadow said he performed a rather thorough exam. I was interviewed for 2 hours. Blood drawn 13 vials. And I was given an EMG and NCV study twice. Based on my history and the results he assured me that I did not have CIDP. When I asked what do I have? He said it was idopathic and it would be a diagnosis by exclusion. He said for now we will say it is ALS, we will get you in the clinic and continue testing. Hopefully we will find something else. But for now you have ALS. Not good news. I just want to say thank you to all and my prayers are with you. Looks like I’ll be spending time on the ALS websites. I’ll check in every once in a while just to say hey.

    • Anonymous
      July 26, 2006 at 12:34 pm

      hi rbtro

      THis is not the best news — I’m sorry. And I hope he’s wrong. Good luck with the more in-depth testing.

    • Anonymous
      July 26, 2006 at 5:58 pm

      I am sorry to hear what the doctors are saying. But don’t give up. My first neuro was convinced that I had ALS. But now they aren’t sure. I’ll keep you in my prayers. Take care…Cheryl

    • Anonymous
      July 26, 2006 at 8:09 pm

      Rbtro,

      You are in my thoughts and prayers.

      Jerimy