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CIDP

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grace61140
grace61140

Hello there. Can anyone receommend a good neurologist with experience of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) or Guillain-Barré Syndrome. Many thanks

0 likes, 12 replies

12 Replies

  • joanne47212
    joanne47212 grace61140

    Posted

    Where in the counrty are you ?
    • joanne47212
      joanne47212 grace61140

      Posted

      Ah don't know that area. Are you a sufferer from either condition?
    • grace61140
      grace61140 joanne47212

      Posted

      I am about 30 minutes away from London by fast train. My father has been diagnosed with CIPD. I would like to get a second opinion. A few weeks ago I had no idea about this condition. I am learning more with each passing day, even though its not easy to understand. I have called/emailed Kings CollegeHospital and UCL (both in London), as well as James Cook in Middlesborough. Awaiting info and recommendations. Going private to accelerate the process and reduce waiting times.
  • KMRC
    KMRC grace61140

    Posted

    Grace, CIDP is an auto immune thing.  I have had it in my arms and hands for many years and nothing I have tried (over 40 years!) have not helped at all.  Where is your father's CIDP?  There is lots of information on the net about it and there are several subtypes of it.  It is a cousin to Guillain-Barre and can certainly turn into that.  Neither is a death sentence, life altering, yes.  Ask his docs for Lidocaine patches.  They help me a lot and you can cut them up to fit anywhere and are not addictive.  Keep us posted and give dad lots of love and support.
    • jeremy04366
      jeremy04366 KMRC

      Posted

      This is not exactly true. Cidp is very fatal. All it has to do is attack your diaphragm. While it's not very common, it does happen often. There are different degrees to cidp. If you have had it for 40 years, then you have one of the least progressive kinds. Mine has ravaged my body in less than a year and has tightened my diaphragm. People die from it every year.

    • caroline35406
      caroline35406 jeremy04366

      Posted

      CIDP is a rare disease of the peripheral nervous system and affects around 500 people in the UK at any one time.  There are a number of difference forms which vary in severity.  Weakness is usually the most prominent complaint and can occassionally be so severe as to confine patients to a chair or bed. Some patients only have a single bout of CIDP lasting for several months or years, after which spontaneous recovery may be made.  Others have many bouts between which spontaneous remission and recovery occurs.  After each bout patients may be left with some residual numbness and weakness and sometimes discomfort.  For many this will not seriously interfere with their lives and they are able to continue or resume their normal occupation.  However, a very small number, around 7%  are left severely disabled and may be dependent on a wheelchair even be bedbound.  There are only a very unfortunate few for whom the disease continues to progress without remission.

      Sometimes patients may develop weakness of the voice or face but this is usually mild compared with the symptoms in the arms and legs. Breathing and swallowing are only very rarely affected. Most people respond to treatment, and some recover with no treatment.  Research shows the mortality rate is currently just over 1% - very rare.

    • jeremy04366
      jeremy04366 caroline35406

      Posted

      Grace, as someone who has known families who lost loved ones and have talked to members online who are no longer here, I can tell you that number is hard to believe. When you break that percentage down , it's hard that I would have encountered 7 people who have lost their life out of that percentage. It attacked their diaphragm in all cases even with ivig. I'm sure those families did not find it quite rare. I just got back from the Mayo clinic and am trying to get a diagnosis. The neurologist discussed in great depth how serious cidp can be. It's treatable yes but never tell anyone it's not a death sentence.

  • caroline35406
    caroline35406 grace61140

    Posted

    You have the right to ask for a second opinion and neurologists known to be specialising in peripheral neuropathies can be seen in National Hospital for Neurology in Queen Square London and Queen Elizabeth Hospital Birmingham.

    Further information on the cobditions can be found on www.gaincharity.org.uk  the only UK charity supporting patients with peripheral neuropathies

     

    • grace61140
      grace61140 caroline35406

      Posted

      Thank you, I will try those two hospitals. He had an MRI scan on Tuesday to ascertain what is happening. He's lost his mobility in the last two weeks and is experiencing severe pain & discomfort in his right leg.
  • timjr
    timjr grace61140

    Posted

    I started having sleepy legs recently more so than would be "normal" and then last month suddenly I went to get out of bed and could not move or feel my legs. This is from the waist down. My pains are all over the road map in my legs. The mobility I have is diminished sometimes and not there at all others and this also is affected by the duration of a particular time frame of my body being in certain positions. If I lay in bed longer than I should it takes longer for my legs to wake up. I have an unsteady gait and fall sometimes. The doctors gave ma a walker upon release from the ER when they could not identify my problems. Upon following up with my PCP I was told I suffer from paralysis, peripheral nerve disease. This issue brought on other symptoms of troubles urinating and increasing pains which landed me back in the ER. They kept me for 36 hours each time. In between ER visits my PCP prescribed me a wheelchair. The neurologist I saw told me nothing was wrong and to return straight back to work(I do warehouse work heavy lifting and walking roughly 5 miles per day) I am told this is not neurologically or vascular related. Yesterday I had an EMG. Still awaiting results. My legs fall asleep instantly upon changing from one position to any other for example going from laying to standing, walking to sitting, sitting on any type of surface and I can no longer drive a car. Any shared stories or advice is greatly appreciated.

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