Your Replies

  • June 18, 2021 at 6:38 pm

    I’m really scared to get COVID vaccine since I got CIDP from flu shot.   Im severe CIDP , nothing “ normal “ about my life.
    Doctors are 50/50  ( most don’t understand how you get CIDP or ever changing symptoms ) on getting the vaccine,  but if my body attacked “ self “ from flu shot why chance another vaccine.

    November 23, 2020 at 11:28 am

    I was dx in 2016 chroncic CIDP extreme progression first 2 years.
    Last 2 years lots dental / teeth issues. I have read other have had issues. I have 7 loose teeth due to CIDP. Their are good medical articles nor CIDP effects teeth.

    July 24, 2019 at 1:02 pm

    Strongly agree with August 8th post by Jim –
    LA. Copious Neurologist only treat disease by textbook which in my case was damaging. Unfortunately their is a lack of Neurologists and in my case I was told first available appointment was 1 year and 2 months.
    Highly recommended that before committing to a Neurologist you ask how many patients they have treated or do with CIDP. Does not stop there. Even I’d the Neurologist treats CIDP EACH HAS THEIR OWN BELIEFS AND TREATMENT PLAN. Many Neurologist ( or in one of my experiences, (the Doctor / Chief of Staff of the hospital) did not belief in Ivig, or plasma treatments , therefore I was on many different Rx , ( at the same time ) that did nothing for me . During that time my health declined as self continued to attack myelin and lost most muscle control. Point being every person different , it is a Must to have a Doctor who listens and communicates with you and understands the ever changing symptoms .
    I by no means intend to attack the profession of Neurologist’s . They are learning as we are learning, which reflects in the increase of people diagnosed with rare autoimmune diseases.

    August 11, 2017 at 10:44 pm

    Great question …..
    For me , I saw 4 Doctors that treated me like It was all in my head , lab work, MRI’s and scans were normal. Each day my health declined and I was scared. I didn’t know what was happening. I was a healthy, active Adult and Doctors could’nt diagnosis me. One Doctor told me
    First available appointment to see a Neuroligist would be over a year. I said at this rate of deteriation I would be dead . Reply was ” I am doing my best ” . Do not commit unless the Doctor has treated CIDP. With that said, Not all experienced CIDP Doctors will be a good match for you. Each Neurologist has different beliefs on treating this rare , nasty disease of CIDP.
    Many Neuroligist have read about CIDP but have never treated CIDP. I have seen two Neuroligist Who use ” case study ” as a treatment plan . Did not treat MY SYMPTOMS, they treated what they read of other patients. Within one year I saw using a wheelchair and sick from all medications .
    It is frustrating answering your Doctors questions , what is your pain level and where do you hurt? They do not understand chronic pain is different from I stubbed my toe kind of pain. CIDP HAS EVER CHANGING MUSCLE AND NERVE PAIN. I did find amazing Neurologist who listened and was willing to try different treatment plans if she saw no results. IVIG worked best for me. I strongly suggest finding a Doctor who treats YOUR symptoms not what worked for others.

    October 27, 2016 at 7:35 pm

    Applying for program is difficult unless you have documentation of symptom onset within 4-6 weeks . Recently I was Dx acute CIPD 3 Doctors.
    CIDP onset is gradual. I had fallen and broke my wrist . I thought numbness and tingling was pinched nerve. Waited few months symptoms progressive. I didn’t see A Dr until 4 months of onset. Then took additional 4 months of many Doctors and tests to get Dx CIPD. By then I needed full time care . I have all the proof for vaccine program EXCEPT DOCUMENTATION OF ONSET DATE.

    October 22, 2016 at 8:14 pm

    CIDP does cause back, neck, shoulder pain maybe a coincidence of timing with IVIG? Many frustrations thru the entire process. My situation, I was new to area and had very hard time getting into a Dr in a timely manner. In 8 months I saw many many Doctors and had lots of lab work, MRI and scans. I had never heard of CIDP. In May, 2016, my ex Doctor said first available Neurologist appt for new pt was 1-17-2017…… Told nurse I would be totally disabled by then she responded that she tried her best. After 8 months of every changing painful symptoms I was Dx CIDP 4 months ago.
    I have learned the hard way, find a good Neurologist who has treated CIDP AND GET 2nd and 3rd opinion. Every persons body reacts different to medicine and treatments. Keep a journal . Communicate with your Doctors nurse if you have questions. I was given many nerve prescriptions mentioned by others that helped them , but made my condition worse. Medicine is to make you feel better not worse .

    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 .