Mark Robichek
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December 22, 2023 at 4:22 pm
Hello, Tim.
After my CIDP symptoms began in 2016, it took over 2 years and 3 different neurologists to properly diagnose me. I don’t know if my situation is similar enough to yours, but the more stories you hear, the better your chances of being set on the right path. I, too, had a spinal tap protein check (inconclusive) and multiple EMG tests (also inconclusive). Finally, my 3rd neurologist figured out a possible connection between my primary immunodeficiency (PI) and my test results. Once my next EMG was timed properly with my PI treatment, the test was now conclusive.
Let’s get you “fixed” before your immune cells start munching away at your axons!
Best of luck, and Happy Holidays!
August 28, 2022 at 4:10 pmHi Audrey,
Hopefully, my similar story will provide you with some ideas on how to proceed. I, too, got the tingling sensation in all four of my limbs. After weakness set in, I went to the ER and was diagnosed with GBS (later changed to CIDP). A massive dose of IVIG in the hospital started me on the road to recovery. In fact, I was fine for nearly two years when all of the sensations came roaring back, and even another massive dose of IVIG didn’t help. It was at that time that my neurologist suggested adding oral prednisone to my treatment. Between the IVIG and prednisone (which has now tapered down from 60mg/day to only 2.5mg/day), I have managed to stay in remission…yay!
If the IVIG/prednisone combo didn’t do the trick, plasmapheresis and/or more powerful drugs was the next treatment in line.
I hope this helps. Good luck!
December 1, 2020 at 10:04 pmI’ll start off with a “no”. I did not have any symptoms at all from the neck up.
Good luck to you!
September 13, 2020 at 12:36 pmHi, Sandra.
Yes, I definitely had a relapse, having had my first attack in 2016, being totally symptom-free for two years and then had a worse attack in 2018.
The good news is that on my second attack, I knew what it was right away, so I drove myself to the ER and was treated with massive doses of IVIG. I got a new neurologist, and he put me on a regimen of recurring large doses of IVIG (at home) along with taking 60mg of Prednisone daily. As my symptoms subsided, the amount of Predisone was reduced (I’m now down to 2.5mg a day), and in 2019, I switched from IVIG to SCIG.
I have not had any issues since, and it seems that whatever nerve damage I sustained has all fully reversed itself.
Good luck to you!
June 10, 2020 at 5:50 pmI was taking 60mg of Prednisone for a couple months, backed it off to 30mg, then 20mg, and then every month, I decreased the dosage by 5mg, ultimately settling on my current (permanent) dosage of 2.5mg per day. My weight is about 155.
I hope this helps!
February 17, 2020 at 1:30 amHello, Chirpybirdy.
I feel for you! This response is not so much advice but sharing my own experience with treating CIDP. The first thing I’ll say that you should ensure that your neurologist is associated with one of the centers of excellence listed on the forum’s website. I had to try 3 neurologists before I found one that knew what he was doing.
I was getting IVIG every 5-7 weeks since 2007 for a primary immunodeficiency. It was only after I switched to every 8 weeks in 2016 that I started showing symptoms of CIDP. After getting high-dose IVIG for 3 days, my symptoms slowly went away, and I was “cured” for over a year. Then, in 2018, my symptoms came right back, stronger than ever. This time, high-dose IVIG didn’t help at all, and I was on the “roller coaster” for over 4 months. That’s when the 3rd neurologist decided to try something new, and that was oral prednisone combined with high-dose IVIG. My symptoms gradually went away over the next 4 months, and by the end of 2018, they were gone. My vein access got worse and worse, and after one nurse tried 7 times (!!!) to access a vein, I decided to make the switch to SCIG. It’s been life changing! I can now travel with all of my infusion supplies, and even though I infuse once a week, it only takes about 2 hours rather than the 6 hour IVIG.
My prednisone was gradually reduced from 60mg/day to 2.5mg/day, and I’m now experimenting with reducing my weekly SCIG dosage.
I’d be scared of trying immune suppressants, but if you’re not okay with prednisone, it might be worthwhile to try it. Get on board with a good neurologist, and see what they have to say.
Good luck!
December 2, 2019 at 4:29 pmI thought I’d add my 2 cents worth. I suffered from a single case of GBS in 2016. It was treated with IVIG only, and I went into remission. However, in early 2018, I had another attack, and multiple attempts to treat me with IVIG only were unsuccessful, and my symptoms were almost constant for over 4 months. Then, I found a better neurologist, who diagnosed me with CIDP. He prescribed IVIG and Prednisone, and within a few more months, I was in remission and have remained that way ever since (my fingers are crossed!). I have now weaned down my dosage of Prednisone from 60mg to only 2.5mg. I hope this helps!
September 9, 2019 at 4:53 pmHi Micah,
I already responded to your other question about IVIG, but now I noticed this one. I live in Sunnyvale, and I’m more than willing to answer your questions, either by phone or through a forum like this.
First off, my first neurologist was at PAMF (in Mountain View), and I wasn’t happy with their style or treatment suggestions. So then I switched to Stanford Hospital, which I expected to be a positive change. Once again, I didn’t care for the doctor or what they suggested. Then I researched Centers of Excellence on the GBS/CIDP forum, and I found the Forbes Norris center in San Francisco. My doctor is absolutely terrific! His style, his techniques, his bedside manner and his treatment suggestions are just perfect for me, and now my CIDP fully in remission.
Let me know how I can help you!
September 8, 2019 at 5:52 pmHi Micah,
As a fellow Bay Area resident with CIDP, I thought I’d chime in here. It took 3 different physicians, but once I finally switched to one that works for one of the GBS/CIDP Centers of Excellence, I was properly diagnosed with CIDP in July, 2018.
My previous physicians has prescribed various doses of IVIG (something I had already been taking for a primary immunodeficiency…lucky me!). Unfortunately, no dosage of IVIG worked against my CIDP.
My current physician prescribed two things:
1) Prednisone, starting at 60mg per day and tapering over time
2) a regular, massive dose (100g) of IVIG every 3 weeks. When my veins started becoming harder to access, I made a life-changing transition to SCIG, and now I’m infusing myself once a week (30g).Almost instantly after starting the Prednisone/IG combination, I started getting better (after 8 months of feeling lousy and weak). Now, my Prednisone dosage is down to 2.5mg per day, but I’m still getting 30g of SCIG per week. My strength is back to 100%, and I’m feeling great!
I don’t know what the future will bring, but I’m very optimistic!
Best of luck to you.
June 25, 2019 at 7:59 pmI’d like to offer you a little bit of hope. I was misdiagnosed with GBS in September, 2016, but when symptoms returned in March, 2018, I sought out a better doctor, and he confirmed that I really had/have CIDP. I was put on a regimen of Prednisone and IVIG in July, 2018 and by November, 2018, I was pretty much back to normal (whatever that is!). In January, 2019, I switched from IVIG to SCIG, mainly so that I could travel if I wanted to without worrying about getting IVs everywhere. I’ve been slowly backing off of the Prednisone, and everything is still hunky dory; my symptoms have not returned.
If you’re not improving at all, you might want to seek out a doctor who specializes in GBS/CIDP. For me, it made all the difference. Good luck!
February 1, 2019 at 6:17 pmHi, Emily.
I’m happy to share with you my personal experience as well as what I’ve learned. First off, about 40% of people told that they have CIDP are probably misdiagnosed. There are several factors which–when combined–lead to a proper CIDP diagnosis. Those include tingling, weakness and/or numbness in the limbs as well as unusual protein levels (as from a spinal tap), difficulty walking, balance issues, and finally subnormal readings on an EMG/nerve conduction test.
In my case, my EMG test was considered “subnormal” by one doctor and “normal” by another. It turns out that I was receiving IVIG for an immune deficiency, and those infusions were normalizing my EMG test results. When I waited a few weeks before another EMG test, it suddenly became conclusive that I had CIDP.
As you can see, it’s quite complicated, so I’d recommend that you see a genuine expert in your area to make sure that you really get diagnosed properly.
Good luck!
December 30, 2018 at 1:19 pmHello, Zeinab.
I had to go through 2 neurologists before zeroing in on neurologist #3, my first neurologist to be affiliated with a GBD/CIDP Center of Excellence. Finally, I found one who diagnosed me properly and got me started on the right treatments that have now got me feeling “almost cured”.
To address your question, NO, it is absolutely NOT a conflict of interest to seek another neurologist, whether at the same practice or at a different one.
For me, the solutions were: 1) Get a proper diagnosis; 2) Fiddle around with my IVIG dosage; and 3) Add Prednisone to the mix.
Good luck!
November 13, 2018 at 5:38 pmHi, Ann-Marie.
My doctor is still trying to work out the correct IVIG dosage and frequency for me, but I do have some experience that might be relevant to you.
After I’ve gotten high-dose IVIG treatments (lasting 2-3 days), I have typically found that my strength and balance start feeling normal after about 7-10 days. The tingling has been unpredictable, coming and going as it pleases. And as for the autonomic reflexes (i.e. when the doctor hits your knee with a mallet), that may take 4-6 months to come back. The trick with CIDP is to find the maintenance (smaller) dosage that keeps the symptoms from returning before you get treated again.
Good luck to you (and all of us)!
August 12, 2018 at 1:52 amThanks, Greg! That’s a heckuva story. I hope that we’re both on the road to recovery.
August 7, 2018 at 1:16 pmAfter my wife & I decided that my primary neurologist could have been better, we decided to make an appointment with the Top GBS/CIDP specialist in Northern California. We met with him last week. After he reviewed all of my EMG test results and performed some physical tests, he made this shocking announcement: He wasn’t sure that I even have CIDP! He told me to stop taking the Prednisone immediately (there shouldn’t be any side effects since I was only on the drug for 2 weeks). He felt that my EMG results may have been biased by the fact that I was getting IVIG for my primary immunodeficiency, and that may have clouded my results. We may yet discover that my latest attack may in fact be CIDP, a rare second attack of GBS or perhaps even something else TBD. Details to follow…
In the meantime, after stopping the Prednisone, I have noticed (possibly coincidentally) that I’ve developed some open sores in my shins. I have also noticed that the tingling in my hands has been coming and going. Has anyone else had similar symptoms, either while taking Prednisone or after stopping the drug?
Thanks!
