u/NCgirl11

I just had my first infusion of IVIG on Thursday (for neurological issues- came on suddenly like GBS but lasting long enough to believe it is CIDP, but now Dr. is seconding guessing the diagnosis after a clear EMG/NCS). I had to keep slowing down the infusion rate due to chest pain and generally not feeling great, but did not have any significant problems.

Monday afternoon my voice was suddenly raspy. I left work and by the time I got to a grocery store 5 minutes away my throat was burning, itchy and weird feeling, and felt tight. I got light headed, my heart rate spiked up and I ended up calling EMS thinking I was having an allergic reaction. I somehow didn't pass out, but they said my blood pressure was so low it was not registering on the machine. I somehow didn't pass out, and ended up waiting in the hospital ER for 9 hours before even being seen. They said my throat looked clear (hadn't actually closed up). Didn't know why everything was still burning/itching/etc. and sent me home. Saw the neurologist yesterday and she didn't think it was related and said allergic reactions usually come on during/right after the infusion.

It has been 2 days now and it is still the same- neck/chest is burning (skin), inside my throat is burning and still feels weird/swollen/etc. Sometimes my lips/tongue feel funny. I took Claritin after leaving the hospital and again today. It does not really seem to be doing much. (I can't take Benadryl).

I have no symptoms of any kind of illness- just this weird stuff. I rarely get allergies, and when I do it is usually itchy/watery eyes and runny nose. I've never experienced anything like this.

Has anyone experienced this after IVIG? If so, what did you do? Nothing else makes sense.

Hi Everyone,

I am 4 months out from the initial onset of GBS (or CIDP- doctor is not sure which yet). During the initial onset I had left sided facial numbness/weakness/heaviness/tingling from my mouth to eye. That lasted for about a month, then finally went away. It came back twice for about a week and a few days. Now when I have bad days I'll sometimes get tingling/mild twitching on that side but it hasn't turned into more. I also still have some weakness/heaviness on bad days- it feels droopy but has never looked droopy.

Shortly before all of this started I broke most of the top off of a wisdom tooth. It cannot be repaired and needs to be pulled. I also have a tooth that needs a crown and root canal- I was going to take care of that when my dental benefits reset but this happened instead.

Both teeth are starting to bother me a bit and I know that getting an infection would be bad. They are both on the left side where I've continued to have some issues. It seems like a terrible idea to shoot numbing medication into nerves that are still freaking out. I can't afford to be put under.

Has anyone had dental work while having similar issues? How did it go? I'm not sure how long I can put it off, but I don't want to cause worse problems.

I am on week 15 of this nightmare and hoping to have some guidance from people who have experienced GBS or CIDP, or have had a GBS diagnosis changed to CIDP.

I am still trying to get a solid diagnosis and treatment. I've had 10 ER visits and endless waits for appointments and tests. At one point it was a 10 month wait for a neurology appointment. The ER refused to admit me, even during the peak when it was getting worse by the hour, I could barely walk, and was having a very hard time breathing. They told me nothing was wrong with me, everything had been ruled out (?- the only thing done at this point was a brain MRI), it was psychological, and I needed to see a psychologist and have PT. This seemed to flag me within the network so future appointments ended in an anxiety/psych diagnosis. I had to go to two out of network neurologists to get taken seriously and to start actual testing. I have had no treatment of any kind from anyone yet.

At this point, the leading Dx is GBS or CIDP. An out of network Dr. diagnosed MOGAD based on a positive blood test with a 1:10 titter, but once I got into the in network MS Dr (MOGAD is most similar to MS) she does not believe it is MOGAD and believes that it is a peripheral nerve issue instead of a CNS issue based on my reflexes. I had a brain MRI on day 1, Spinal cord MRI on week 7, Lumbar puncture on week 12, EMG on week 5 (normal they claim, but on one of the leg locations it took quite a while after constant shocking to get a reaction), and at least 60+ blood tests for everything you can test for. Everything has been normal or negative. I've thought GBS from early in based on symptoms/timeline. The Dr. is leaning towards CIDP because it has been longer term.

No Dr. has explained anything to me. I've had no explanations of the differences between possible diagnosis, what to expect as it progresses, what to do about it, etc. I'm relying on internet research so it would be so helpful to hear from people who have actually gone through this. The Dr. is unwilling to order any treatment without being sure of the diagnosis, even though IVIG or PLEX seems to be the primary treatment for everything this could be. I am now waiting another month for a second EMG before the Dr. will consider anything for treatment. I am having a bit of a dilemma now. The out of network Dr. put in for IVIG based on a MOGAD diagnosis 2 months ago which was just finally approved. I can get IVIG for free next week. It is 2 g/kg over 2 days, which is the recommended loading dose for both GBS and CIDP. My understanding is that it will not help me if I have GBS now that I am 15 weeks out. If it is CIDP though, it could help.

The acute phase of this seems to match with GBS. I was driving to work and thought I had a stroke- the left side of my face went numb/heavy/weak. It never looked droopy but felt like it. Maybe 15 second after that, both of my arms suddenly went heavy/weak. I had some vision issues (but never double vision). I eventually had to stop in the road an call for an ambulance. They did a stroke work up (CT, Brain MRI), said everything was normal, said it didn't really seem like a stroke or TIA, and said it may be a complex migraine. The next day everything else started. Both legs were very weak and heavy. I started getting weird tingling. The peak was from about weeks 2-4 or 5. Arms and legs got weaker, neck got weak, I had chest heaviness/weakness, I had a lot of difficulty breathing/shortness of breath, tight bands of chest pressure (just like people describe MS hugs to be), difficulty swallowing and a feeling of being choked, extreme ear pain/pressure and muffled hearing in one ear, and strained/blurry vision. It also seemed like an electrical storm- tinging down both arms/hands and in my head, spine pain and electrical shock feelings from my spine and back of my neck, burning, heat flashes, cold wet feelings across my back, chills, and probably more weird sensations I'm forgetting.

The electrical feelings started fading away around week 4-6. Weeks 7-8 had a horrible headache (didn't have traditional head pain before this), very bad neck pain, eye pain, more vision issues, and more ear pain. I've wondered if I had aseptic meningitis but don't know. It felt like my head was going to explode. That eventually faded away.

For the last 6 weeks or so, I have assumed that I am continuing to get worse (CIDP?) but after digging around online, it seems like I may just be in the recovery phase of GBS. The tingling/electrical type feelings have generally stopped, but both arms and legs still have extreme weakness/heaviness. My arms and legs started having pretty bad pain. I assumed this meant that I was getting worse as I really did not have pain before. Digging around, it sounds like pain is normal in GBS recovery. I have started getting warm flashes down my arms and hands/fingers. I have been having strong constant left sided chest pain for the last 4 weeks, sometimes through to my back or shoulder. I'm still afraid that I'm having a heart issues, but I've gone in 4 times and the ER says no- normal EKG, normal troponin and other blood tests, normal chest X-Ray, normal chest CT, two 14 day heart monitors were normal. The shortness of breath seems to be more constant than during the acute phase. The arm weakness and hand coordination seems worse now than during the acute phase, but each day is different.

I am really not sure how you distinguish between GBS and CIDP when it has been so long, other than waiting for another flare up. Protein levels were normal in spinal fluid, but it sounds like it may be normal after 3 months. My understanding is that CIDP is more gradual, and this came on pretty quickly. I did get food poisoning in the Dominican Republic that lingered for about 2 weeks. I never really felt right after it. Food poisoning (or stomach virus?) started 6 weeks before this started and ended 4 weeks before this started.

Has anyone had CIDP come on quickly? Does this seem to match anyone's GBS recovery? I've been largely incapacitated for four months now and am going crazy worrying that the delays in diagnosis and treatment are causing additional damage and making recovery less likely. I'd appreciate any feedback I can get from people going through this, as doctors have not offered me anything. (While this has been horrible, I fully appreciate that it is not nearly as bad as what many people are going through. I was never paralyzed and manged breathing issues at home. Wishing everyone here recovery).