Problem getting Diagnosed, could it be CIDP?

    • September 24, 2016 at 10:29 pm

      I have been suffering from sleepy legs in both legs recently and suffered an almost overnight onset of partial paralysis in both legs from the waist down. Immediately after this onset my legs fall asleep in any position sitting, laying or standing, I have an unsteady gait and have fallen numerous times so much so that I have been placed as a high risk for falls. This happened suddenly on 8/11/16 when I went to get out of bed while watching tv and could not move my legs at all nor could I feel them, it was if they vanished off my body. I do have some limited mobility, but sometimes zero mobility or feelings, yet I do have some diminished feelings of the outside environment. I went to the ER and was held for 36 hours in the ER, and underwent MRI-full spine and ultrasounds showing unremarkable, so they released me with a walker. Upon follow up with PCP I was told I suffer from Paralysis due to peripheral nerve disease yet this was not an official diagnosis within my medical record and then my PCP prescribed me a wheelchair. I Setand went to various appointments with Neurology and vascular specialists. Neurologist told me I had strong legs and to get straight back to work even though I could not move my legs for him and was confined to my wheelchair, he did try a few ancient Chinese pressure point treatments unsuccessfully. I then went back to my PCP and was excused from work through this November. Still no direct answers even though they wrote in my record “autonomic neuropathy bilateral”. Pains and new symptoms of urinary issues sent me back to ER again for 2 days and was seen by several teams of ER doctors and neurologists who all had no explanations for my random loss of mobility and released once more. Vascular and Neuro specialists they all say neither of these are related … if my symptoms are “truly there”. I keep having questions asked of me in regards to my stress, sadness, depression or what I’m worried about. I have very minimal stress outside of this current medical issue, no sadness or depression outside of these symptoms and certainly not worried about anything else other than my next steps. One neurologist told me she wants to have my “case” closed out even though my insurance agrees that Paralysis due to peripheral nerve disease is an actual diagnosis. One of the ER doctors diagnosed me with Progressive Paraplegia. Yet all my doctors can not or will not agree with these observations as a diagnosis. I believe my symptoms are those related to CIDP. The intensity and duration of my symptoms are currently increasing yet again. My EMG test was yesterday and I’m awaiting those results now. Any ideas and advice will be greatly appreciated.

    • September 25, 2016 at 12:52 am

      Please read the following brochure to help you determine if you might have CIDP:
      http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/CIDP.pdf

      Can you tell us your location? We may be able to offer referrals to specialists in your area.

    • September 25, 2016 at 5:21 pm

      Hope this info helps….I had gradual onset and diagnostics used for diagnosis included EMG, lumbar puncture and MRI as well as neuro check. I have no deep tendon reflexes, f-wave of EMG is delayed, thickened nerve roots(MRI) and protein in my spinal fluid (lumbar puncture). I would recommend a second opinion or suggest/ask about transverse myelitis.

    • September 25, 2016 at 8:33 pm

      Hello all, to Jim-LA I’m in San Diego and have been seen for this at UCSD and I should have some results back tomorrow I will look at the info you gave here and to RoniSh thanks for your info too. I will add transverse myelitis to my notes.

    • September 25, 2016 at 10:10 pm

      tgriffen, The closest Center of Excellence to you is in Los Angeles (there are 3 in LA area):

      centers of excellence

      Others on this forum have had good things to say about the following Neurologists at Scripps:
      https://www.scripps.org/physicians/5188-gregory-sahagian
      https://www.scripps.org/physicians/8057-geoffrey-sheean

      The GBS/CIDP liaison in your area may have other good referrals:
      CALIFORNIA (SAN DIEGO)
      Lizz Russell-Parker
      San Diego, CA 92102
      (619) 750-8778
      lizz.russell@gbs-cidp.org
      or
      Julie Jukich
      San Diego, CA 92108
      (619) 218-6033
      julie.jukich@gbs-cidp.org

      Good luck!

    • September 27, 2016 at 12:24 am

      There’s a lot of good universities in California with good Neuroscience centers, if you can I would try to go over to Cedar Sinai.

    • October 2, 2016 at 9:17 pm

      Hello TGriffin,

      First, please note that none of us here (well, maybe one or two) are doctors, so what we tell you is just from what we have read and from our own experience. Take what we say with a grain of salt.

      Second, GBS and CIDP have definitions for their onsets. If your symptoms started in August, but then remitted, and now are back, it fits the definition of CIDP. However, I personally would not rule out GBS, as your symptoms seem to have come on faster than typical for CIDP. If the EMG suggest demyelination, I would not worry too much about if the cause is GBS or CIDP, I would get started on a treatment of IVIg or plasmapheresis as soon as possible.

      Godspeed in finding a treatment and a diagnosis.
      ~MarkEns

    • October 3, 2016 at 11:37 pm

      Hola a todos, soy claudia paciente de 37 Anos de edad , mi ocupacion actual es fisioterapeuta, trabajo en cuidados intensivos, y practico el atletismo desde hace 20 anos.
      Aproximadamente hace un ano empece a sentir parestesias luego de un tiempo de estar corriendo sobre todo en el antepie derecho y cambie dos veces de talla de tennis durante el ultimo ano sin exito ya que las parestesias siguieron, en diciembre de 2015 empece a sentir perdida de fuerza en la mano izquierda, dificultad para los movimientos finos y dolor en los dedos de las manos , tambien parestesias, consulte al reumatologo en abril de 2016, todas las pruebas para imnumidad fueron negativas ( anas, enas, anticuerpos citrulinados, factor reumatoideo ) radiografias de manos y pies normales, resonancia magnetica de mano con engrosamiento de la capsula a nivel del tercer dedo , me diagnosticaron reumatismo inflamatorio e inicie tratamiento medico con hidroxicloroquina 200 mgs dia y deflazacort 6 mgs dia, durante esos dos meses me cai dos veces mientras corria, tuve previamente sensacion de bota en la pierna izquierda ,fui a control con el reumatologo quien observo mejoria desde el punto de vista articular pero empeoramiento del sistema musculoesqueletico con perdida de fuerza e incremento de la fatiga, me mandaron una EMG y potenciales evocados cuyo resultado fue polineuropatia inflamatoria sensitivo y motora tipo desmielinizante ,a los dos dias 9 de septiembre de 2016 me hospitalizaron y me hicieron una puncion lumbar , en el liquido cefalorraquideo no habia incremeto de proteinas no disociacion albumino citologica con bandas oligoclonales normales, recibi inmunoglobulina IV 2 grs por Milo repartidos por 5 dias, no hubo cambio significativos en cuanto a la fuerza muscular, adicionalmente recibo aziatropina 50 mgs dia, pregabalina 75 mgs dia, deflazacort 6 mgs dia y hidroxicloroquina 200 mgs , el 27 de septiembre en control con neurologia me mandaron un test de lambert el cual fue positivo 31 % para enfermedad neuromuscular, tac de torax y me tomaron anticuerpos para receptores de acetilcolina que estan pendientes , aun no se aclara el diagnostico yo quisiera saber que opinan ustedes porque cada dia que pasa siento mas perdida de la fuerza muscular, gracias.

    • October 4, 2016 at 3:33 pm

      cvramirez, You have a tough case. Sometimes IVIg takes awhile to produce results. However, I did not work for me and there are many it hasn’t helped. I suggest you look into Plasma Exchange and Rituximab treatments.

    • October 22, 2016 at 6:59 pm

      Ask your Dr for a EMG . Frustrating how long takes Dr to diagnose. In my case Most Dr had never heard of CIDP .

    • January 21, 2017 at 5:11 pm

      Added forum search tag for “San Diego Doctors”

    • GH
      January 22, 2017 at 5:01 am

      If a neurologist tried traditional Chinese medicine on me, I would start looking for a new neurologist right away.