Your Replies

  • March 23, 2018 at 12:49 am

    Symptoms, MRIs, LP, NCV and EMG gave me a CIDP Dx after my issues went beyond 4 weeks. Find a neurologist with neuromuscular/neuropathy background!

    IVIG got me going again initially after treatment #3 of loading dose (still taking every 2 weeks) but hasnt been as effective lately and PE has been added as a treatment when I relapse hard. 5 x (every other day) each treatment cycle and I see improvement on #3-4.

    All the best to you

    March 23, 2018 at 12:31 am

    Had the NCV and EMG done multiple times on way to a CIDP DX. Others said they were horrible to do but I had no issues with them at all.

    March 18, 2018 at 7:58 pm

    I have been receiving conventional treatment since December 2016 (I have had IVIg, been on steroids and now have regular PE). The tiredness is also a feature and

    Out of curiousity, how frequently is “regular PE” and how many treatments does it consist of?

    February 20, 2018 at 11:49 pm

    Hmm, my neuro exams have been about 90 % of these linked. tiptoes, heels, dont let push, dont let pull, nose to finger, follow finger with eyes, reflexes, etc


    February 19, 2018 at 10:00 pm

    The tiptoes is a definite thing I use to gauge how I am doing. Great when I can walk on them (which is declining now) and a bummer when I can’t raise on them at all.

    As mentioned I would expect that to be a normal test your neuro is doing as part of their evaluations.

    February 15, 2018 at 8:06 pm

    He is achy all over and now extremely depressed. Does this pass? Is this normal?

    Can’t speak for others, but my initial loading dose of IVIG had me seeing tremendous improvement after 3-4 days and none of the effects you described.

    February 8, 2018 at 10:25 pm

    PE apart from having a line inserted in your groin each time is pretty harmless. It drains away your plasma and you see it filling up in a bag and it’s dark yellow. Clotting Levels become an issue but it’s all monitored.

    In my case the line has been inserted in my neck but still no issues other than one treatment my BP dropped. I have had the clotting factor issue a few times requiring a tranfusion the day after PE.

    January 29, 2018 at 7:11 pm

    Interesting. I was Dx’ed Celiac over 10 years pre CIDP.

    January 27, 2018 at 9:04 am

    504 is a Gateway Timeout error. Could be site servers or it could be your internet connection or in between. It’s not a direct path to the site from your computer.

    I have not had any issues with the site loading and don’t think it is anything from the previous site changes.


    January 19, 2018 at 10:20 pm

    I take gapapentin 3 xs a day at 600 mg i been taking it fir 9 months im so used to it, it dont make me sleepy

    Best of luck to you. Did the gabapentin help you at all? I cant get to any therapeutic dosing where it doesn’t make me nonfunctional for like 16 hours.

    January 15, 2018 at 1:59 pm

    First I recall hearing of this and don’t think my mine has been tested since having a CIDP DX, but apparently it is known


    Laboratory test abnormalities were found in most CIDP patients. The most common were paraproteinemia, higher than expected frequency of diabetes, and unexpected CK elevation. Additional abnormalities included anemia, high urate levels, and common biomarkers for vasculitic neuropathies. Muscle Nerve 53: 862-865, 2016.

    January 13, 2018 at 2:16 am

    Back to review replies in various PE posts and ask about how often many are getting plasma exchange?

    Had 5x over 10 days in-patient about 7-8 weeks ago. Good response starting after 3rd TX and also restarted IVIG after the last one. Great results for 4-5 weeks but now things have plummeted and I’m probably worse than before with walking, balance, falls, grasping, lifting, rising from sitting, weakness, etc. Thats with a cane or walker.

    Communicating with neuro but it doesnt sound like they have other patients receiving PE this frequently although from comments in thread, especially Jim and Gavol, it doesn’t seem that unusual either. My only real affect from PE was low clotting factors requiring a transfusion on off days.

    Every 4-6 weeks seems really inconvenient for 10 days in-patient, but so is this near disabled condition I’m at now. Hope there’s not a lot of insurance pushback. It has been really good so far.

    January 11, 2018 at 11:23 pm

    Link to referenced summary and article purchase info


    January 7, 2018 at 8:35 pm

    So I need to sit in the chair for 6 hours on each of two consecutive days every 3 weeks.

    Anyone get the IVIG infusion done in just one day?

    CIDP DX, not Anti-MAG. I do not get saline, just the IVIG with Tylenlol and Benadryl premeds. Rate usually starts around 115 and finishes around 350.

    When I was getting around 100 gms that was being done in one day. Since we have upped the dosage I’m now getting IG over 2 days.

    January 2, 2018 at 7:49 pm


    As previously mentioned, getting your Dr involved to provide appeals and evidence with the insurance company can be key.

    Each BCBS is independent (unless having multiples owned by an entity e.g HCSC has 5 BCBS plans) so finding other plans that allow it is a good point to use, even better if you can find other cases within your current plan who they allowed it for.

    Most plans have their medical policies online so some info can often be found there.

    Might also check out http://www.theinsurancewarrior.com