New- CIPD and Central Nerves/ Cranial

This topic contains 20 replies, has 9 voices, and was last updated by  ChicagoCIDP 3 weeks, 3 days ago.

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  • #111790

    Jim-LA
    Participant

    gressier, you may wish to use a GBS-CIDP Foundation liaison to help you locate a good specialist near you. If you don’t find coverage for your area in the following listing, please post back with your location and we will try to give you some referrals:
    http://www.gbs-cidp.org/wp-content/uploads/2013/10/GBS-Directory0613.pdf

    #111800

    MarkEns
    Participant

    Hello Linda,

    As a fellow CIDP sufferer, I had very minor face cramping and occasional difficulty with my eyes and slurring of my speech. The symptoms were always mild, so I never made much of a fuss about them. I did occasionally mention them to my neurologist, who would brush them off. I have a great deal of respect for him, so I took his “brush-off” to mean that they indeed unusual symptoms. I am confident that if they were more of a problem, he would have take them more seriously.

    There are 13 cranial nerves. The terminal, olfactory, and optic nerves are considered part of the central nervous system. The other ten are considered peripheral nerves. So, while unusual (even in an unusual disease), CIDP can affect them as well. Indeed, several years ago there was a young girl with CIDP whose first sign of relapse was problems with controlling one of her eyes.

    Of course, your symptoms could also have a CNS cause, just as MS patients have peripheral pain, even though there is nothing wrong with the peripheral nerves. Unfortunately, there is no good way to test these nerves. Think about trying to do an NCV test on your head. Uhh; it is bad enough on the arms and legs. A biopsy is pretty much out too. That leaves just symptom response to treatment. You might need to keep a diary of symptoms and treatments. Be objective in the symptom report, because the treatments may not work right away.

    Godspeed in getting a treatment that works.
    ~MarkEns

    #113508

    Collins22
    Participant

    Cranial nerve involvement as well. Botox injections saved me. You might look into it.

    #113513

    billwhit1
    Participant

    Well Ive just had my 11th IVIG (Providgen) and am not that much better. I’m on a 6 week interval now. I have alway been very very active person. At 75 I exercise 4 times a week. My idea of exercise is to work each exercise until I can’t do another repetition of it. I first ride an incumbent bike for 30 minuets of an hour with resistance. When I stop i’m breathing hard. Not through my mouth but heavily. I also break a light sweat on my brow.Light machine exercises for another hour. Thats 3 times a week and light chair exercises the other days. I’m still walking with a cane and having most of my symptoms remaining. More later fellow vets.

    #116484

    Eileen
    Participant

    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.

    #116485

    ChicagoCIDP
    Participant

    Eileen,

    You are absolutely right! The doctors have to listen to what you are telling them because that’s all they can off of. My hospital has a portal and I choose to message my doc every couple weeks with an update on all that I am feeling. I get a response back within a business day and we alter med dosages if need be without having to schedule a visit.

    They are in fact learning also as this isn’t the most figured out disorders at this point in time. The key is to communicate often and thoroughly. There is no one-trick to get fixed.

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