Newly diagnosed with CIDP

    • May 28, 2023 at 1:51 pm

      In November, 2022,  I had bad intestinal/colon issue. Along with that I had weak rubbery, feeling knees and shakiness when standing too long.  Could not sleep on side or stomach- only back. Had back spasms. No appetite.  Started with a Gastro Doctor He thought possibly was gallbladder but after blood work. ultrasound, Ct scan – all came back normal.
      I saw my PC in December for the leg issue.  He ordered more bloodwork. No improvement.  January I made an appointment with a neurologist but  I couldn’t see until August 2023.  I contacted PC dr who referred me to neurologist I finally saw end of April.
      He performed the two nerve tests on legs and told me  I had moderate to severe neuropathy.
      He thought it was due to my back  and ordered an MRI of  lower lumbar.   That was not the problem.  He then ordered ganglioside tests and only one associated with GBS  was abnormal with 1:200 titer that should have been 1:100.    Next was the lumbar puncture.  That came back normal.
      So, they have said I have CIDP and should start  IVig infusions.
      I have an appointment for a second opinion with one of  Centers of Excellence clinics listed on this website for second opinion.
      I am going to PT now which is helping   I don’t have pain-  my shakiness and rubbery knees have turned into more numbness knees to toes  and  especially when in bed at night   When I sit for a long time, I am shaky when I first stand until I get my bearings.   So -I am here now learning all I can

      I am in my early 70’s and have been healthy and active until now


    • May 30, 2023 at 11:08 pm

      Welcome. Sorry, you are dealing with this.  While I am not a doctor, I have CIDP and was pretty certain you needed an elevated protein in your spinal fluid to be considered CIDP.  Not to say, that whatever you have stinks!

      I’m hoping people will chime in here.  This forum isn’t the most active but it is a lifeline for hope for people in the dark about what is happening to them.  I would also say, that the intestine issue would seem to not be in conjunction with the neuropathy.  The neuropathy was probably already happening for several months to get you to that point of weakness in November.  Again, just an opinion.

      What city are you in?  Maybe someone can give you a good referral.


    • May 31, 2023 at 9:36 am

      <p style=”text-align: left;”>Thanks for your reply Dave.  I live near Austin Tx is impossible to find a PC  here much less a neurologist.  My second opinion is with a  center of excellence  UTHouston I found on this website.  Two months after I got sick-  the numbness started.  I saw a PC Dr and my reflexes in legs were barely there.  So all the blood tests for idiopathic neuropathy started  and all normal.  He referred me to neurologist.
      I really think could have had GB and didn’t get over it. Then my issue. became chronic.
      I literally woke up one morning so sick and I had multiple issues with my knees & legs with it.  I had to be driven to gastro dr because I was so shaky.
      I read that about protein in CSF also.
      They only positive test I got from all blood testing was that ganglioside.  And the in-office nerve tests indicated neuropathy.  So here, almost 7 mos later, I am going to PT, which helps.  Need toe exercises too since they don’t work well and are really  numb.  I feel lucky because I don’t have any pain</p>


    • jk
      July 26, 2023 at 8:30 pm

      In an article in the Jan 2020 Neurology and Therapy by Dr. Allen, the Chairman of the GBS-CIDP Advisory board writes about the misdiagnosis of cidp.  quote “over-reliance on elevations in cerebrospinal fluid protein concentration in indeterminate ranges.”

      I have the Lewis-Sumner variant of CIDP, also called MADSAM.  Multifocal Acquired Demyelinating Sensory and motor neuropathy.

      At no time have I had elevated CSF.

      The article is here.

    • August 19, 2023 at 7:39 pm

      You might consider Dr Kazim Sheikh at UT Houston he is associated with the Foundation medical advisors. Very knowledgeable and pleasant person. Well worth a consult. Or second opinion. I am a patient of his and can highly recommend him!