It is possible that you had a mild GBS case. And it’s possible that these are CIDP flares. Most people are used to seeing a slow steady build of symptoms and then things getting a little better or worse. They aren’t used to seeing the remitting and relapsing form. Your doctor is right to be skeptical, to rule out other things, but nothing you’ve said rules out CIDP (nor one of the many variants of CIDP).

I had many of the symptoms of CIDP for 6-7 years before I got diagnosed. The doctors assumed it as Fibromyalgia and never looked deeper than that. Then I had a sudden and severe increase in pain, muscle weakness, low back pain, and loss of mobility in my legs. When my rheumatologist gave me steroids because he thought I was fighting a post-surgical related Fibro flare, it made a dramatic difference in just a few hours. When they wore off everything went back to bad and kept getting worse. That was my rheumatologist’s clue that something neurological was happening and he referred me out. Now that I’m doing IVIG infusions with other CIDP patients, I’m seeing how we all got here in different ways, and different patterns, and different severities. Those who had a distinct and significant GBS episode before the CIDP tended to have clearer diagnosis histories. Those of us who skipped GBS often have had several wrong diagnoses and failed treatments along the way before we got properly diagnosed. Unfortunately that means some of us slow cases have accrued significant levels of nerve damage over the years we weren’t being treated. Good luck.

There is the suggested dose pattern, but I haven’t seen any maximum dose out there (but I’m sure if anyone has a max its your insurance company). The standard is to do the loading dose 2g/kg div 2-5 days, then drop to 1g/kg div 2-5 days typically every 4 weeks. Based on patient response the time usually gets adjusted forwards or backwards first. Based on degree of disease seen during the diagnostic process (EMG, LP, MRI) the doctor may choose to stay at the loading dose longer before dropping down. The amount of flexibility in timing and dose is sadly also affected by insurance. Based on clinical response after 3-6 months doctors will either stick with IVIG (assuming positive results they will keep trying to dial it in to find an ideal pattern, add steroids with the IVIG for added benefit, or change brands of the IVIG of there seems to be less benefit than expected or more negative side effects than expected), or leave IVIG to try Plasmapheresis (especially if symptoms are continuing to worsen), convert to subcutaneous IVIG (especially if IVIG is showing benefit but too many negative side effects, or too much of a rollercoaster between infusions, since this is meant to be used about once a week at home), or trying immunosuppressants (such as Rituxan).

I have had benefit from IVIG. However the area of nerve damage in my body keeps spreading, like we haven’t yet caught up to the speed of the disease. I was approved to do the loading dose level every four weeks for the first year by my insurance. At the six month mark I can tell that I start significantly relapsing at the start of that third week, but because of insurance we can’t push it forward to match my crash. What we tried this month was starting my IVIG with 2g of Solumedrol to try to get an extra jump on the worsening symptoms. If this doesn’t work, my Neuro wants to try it one more month with Solumedrol again and then take a break from IVIG to do an inpatient round of Plasmapheresis for 5-10 days. He indicated his preference is to then return to IVIG. If it still fails then he will discuss staying on Plasmapheresis longer (for some patients indefinitely).

So there are still options for you and your dr to discuss. If IVIG has made improvements, I’d probably try a steroid booster first and a brand switch second. If still no meaningful difference I’d probably try subcutaneous next if I felt like IVIG was still helping me but it’s just not able to be done soon enough between infusions to keep me feeling leveled between infusions. If, though, I felt like my symptoms of nerve damage were spreading in severe or widespread ways (such as having bladder, colon, stomach, swallowing issues; or significant difficult using all four limbs) I’d advocate for Plasmapheresis until things improve enough to return to IVIG. If your Neuro isn’t aware of the other options, or unwilling to provide them, it may be time for a second opinion with someone else who has more experience with these non-IVIG options.

Good luck.

Follow the link on this hosting page for the “Centers of Excellence” then click the button for more info. There are specific doctors listed, not just the whole hospital or whole department. There’s also a CIDP group on FB where you might be able to connect with more local folks.

ER’s typically only care about urgent medical issues (like it needs to treated within the next 24-72 hours or you’re at risk of serious complications of death). They looked for something urgent (like a severely compromised vertebrae or Cauda Aquina). After that came back normal, they don’t care. They send you down the outpatient path.

What you need is an EMG, so they can see what’s going on in your limbs. They might also do an MRI to look for lesions (like MS). EMG is usually done by neuro but some PM&R/sports Drs also do them. They may be faster to get in, but if your EMG shows CIDP they probably won’t treat it (back to Neurology). You might want to play the odds here and schedule with the Neuro but see if you can find a PM&R/Sport dr who does EMG who can see you sooner… so that if it is showing up in the EMG, you’ve already got the results by the time you see Neuro. Getting CIDP positive EMG might also bump you up in line for getting into the Neuro.

But yeah CIDP sounds plausible so far.