When things get worse and worse, not better and better

6 moths ago, I was a very active, healthy, physically fit woman. I’ll spare you the drama of the multiple hospital admits, sural nerve and muscle biopsies, 3 EMG’s by 3 different Neuro’s. So, finally, we get to diagnosis: CIDP. The usual … Tons of cortisone (60 mg) and IVIG 1x mo. So far so good … For the first 2 rounds. The last 2 … NOTHING! back to behind square #1. Add awful facial and hand/wrist contracture, can hardly speak (larynx), now, lower jaw shakes so hard and fast can hardly hold head still. THESE ARE JUST HEADLINES of decline. Being sent to an uber specialist at Shands Hospital this week whose specialty is (w/ 50 degrees) is EMG’s and cranial nerve involvement.

  1. Has anyone had 2 successful rounds of IViG the. 2 failures? 2. Does anyone have the cranial nerve involvement?
    I no longer can be in public because of the facial contracture. Of course, I can’t walk w/o a walker and the whole body pain is increasing exponentially. HELP!

Thanks in advance for your feedback!

So ivig did not work for me at all i have been doing plasmapharesis treatments for almost 2 years and it has helped a lot and is cheaper than ivig

What is PE like? How long does it take? How often? Do you have to have it
done as an inpatient? With the IVIG, the RN comes to our home.

I couldn’t do IVIG because it gave me horrible lesions all over my body. Switched to Subcutaneous Cutaneous Immuno Globulin. With nerve pain meds. Not quite cutting it may have to add in some chemo therapy drugs soon. Very nervous about the drugs. So sorry you’re going through this. Keep positive, eventually they will stabilize you. Also read an article yesterday how they may have found a cure for MS from gene therapy and drug combo in Mice. They are doing all kinds of research. Reach out If you want to talk.

It is out patient,and takes around 3-4 hours.i started out every week and am now down to every 5-6 weeks.basicaly they take out the plasma from your blood (which has the bad antibodies)and replace it with new plasma it is similar to diaylisis. no sideeffects except being extra tired for the rest of the day. .

I had emgs that showed at the lower end of normal, but not CIDP, but biopsy confirmed. Don’t isolate your self because of temporary contortion due to disease, you can’t help it you poor thing.
While you currently walk in secmvere tribulation, things will get better one day soon. I know because I was you and now I am better and you will be too. This condition right now will not define you forever.! You will get okay again. Hold onto that hope!

IVIG infusions weekly for 3 years then it stopped working, but that was after 3 years. I would avoid long term high infusions of steroid as they made me hungry and very angry! Warning on roids, roid rage is real and it changes your personality to aggressive, pissed off and an hungry so I stopped everything and dealt with pain. Later remission of CIDP, but still had all the pain and still do. You will get better than you are right now!

Loved your email! And, very glad you are so much better! I sure 'get’
the ‘roid rage’ deal. SO not my personality and comes on so unexpectedly.

Would you be willing to share a description of the pain you have?

One woman wrote me about the intense, unremitting pain her husband is
experiencing w/ zero relief. What is up w/ pain mgmt being part of the
treatment plan for CIDP??

Leaving in AM for a huge med center my Neuro is sending me to. The Neuro
there is the BIG DOG in EMG tech and cerebral nerve involvement w/ CIPD. I
have horrific facial contortions (also hand contusion) and now lower jaw

Is this too much fun or what?

Mary Ann

Wow I’m so sorry about the cerebral nerve involvement, I have no idea what the hell that is?? I thought CIDP was exclusive to peripheral nerves. Hands, legs and feet. I’ll admit I don’t have a lot going on in my cranium due to drugs and then more drugs.

I used to have terrible chronic pain in my legs, mostly below the knees but it made its way up into my left thigh too, and feet. The implanted neurostimulator does a great job of reducing leg pain, not all but a great deal of my leg pain is gone. But for whatever the neuro stimulator doesn’t help my foot pain which I try to describe as non specific, meaning I can’t touch it and say right here is where it hurts. It’s all around but mostly on the outside edge so like the part starting at your little toe and go back on the outer edge from there to the back of the foot heel. It aches like a bad toothache. Not pins or sticking needles or burning. Just a fairly constant deep ache.
How is that for explaining the pain?

Good luck at the super neuro EMG top dog.
I’ve had plenty and passed them so it made the neurologist think I didn’t have CIDP, so I got the nerve biopsy which confirmed it. I needed confirm to get pain management. Hydrocodone, fentanyl transdermal patch and neurontin. Mix it all together, then drive real fast.
Try not to worry about the facial stuff. I’m sure it’s embarrassing for you but forget about what other people might react to that don’t know you as a person.

You will get better! This is not what you will be forever, just how you are today. It won’t last and your disease does not define you as a person.

William T. Scott
xxx xxx-xxxx (telephone number removed by Moderator Support for your online safety. Please share phone numbers and email addresses using the private messaging on this site.)

Sorry you’re going through that ordeal. I was diagnosed with CIDP over two years ago. Started with 40 mg of prednisone daily, then added IVIG treatments and tapered off prednisone. All was going well, then 9 months later went back to worse than square one. I felt lost. Started again with prednisone, which I hate, but helps me. I gained over 40 pounds and was feeling miserable but I decided to fight this illness on my own terms. I have changed my eating habits, basically vegetarian, with some exceptions from time to time. I have included lots of greens in my diet and everything I learn that helps to improve my immune system. I drink a lot of probiotics, which I make myself. I make my own kefir (milk and water kefir), powerful nutrients for the immune system. After two months of doing this, I have lost 20 pounds, I’m off prednisone and I’m just doing the IVIG two days a month. I gaining strength and pain has improved a little. I know that from time to time with this condition you should expect set backs, but it gets better. It helps to have a positive attitude and believe in your strength. I hope this is helpful.

Bryan DavisCheaper?? Really?

I’ve been googling since I got back from the mega med ctr and Uber Dr and cannot find anything re: PE Clinic. I live near Tallahassee FL … a small Southern town that ended up being the 3rd Capital of FL but still thinks it’s the magnolia capital instead. UGH!
All help in finding an out patient PE facility greatly appreciated. I will NEVER be admitted to the hospital here after the horrific 3 admissions 6 mo ago. Am making that part of my living will.

Thx for info. In addition to weight gain from steroids, I’m having to take 100mg Lyrica which will add 25 lbs in a heart beat. ‘Healthy Me’ does Pilates nearly every day and fast walks 2.25 mi. Daily.
My Dr and Neuro PT are on me constantly about doing ‘too much’ when all I’m doing is the ‘baby’ exercises PT gives me … just more reps! Does anyone understand the ‘less is more’ mentality??

I do t have the communication set up for this site mastered. Pls read replies made to others in this day. I meant to have one of them directly to you!

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