No official diagnosis, but doc is convinced. Starting IVIG

    • November 28, 2017 at 12:48 pm

      So… about 3 months ago, I had a terrible sore throat. I recovered from it uneventfully, but found immediately afterwards that I was having incredible difficulty swallowing. I was choking on every 10th sip of water, choking on solid foods, and the doctors had no idea what was going on. At first they thought it GI, so I got scoped. 2 weeks passed until I saw another doctor and it got worse, I could only drink ensure shakes. My tongue was deviated to the right and eventually they thought I had a stroke. Anciallary symptoms started – burning under my toes and feet, my hands and arms would get numb easily, and I started twitching in all of my muscles. I saw a blue light in my vision. It was hell.

      Finally a neurologist saw me and ordered about a million tests, MRI, Lumbar puncture… I had nothing in my brain, no stroke, no infection. In fact, they couldn’t find a single thing wrong with me. The doc though was firmly convinced it was a variant of GBS, or some sort of autoimmune attack. He started me on steroids and surprisingly, after I took the prednisone, I almost completely recovered – I was in a very good place there for about 3 weeks.

      Now it’s 6 weeks after I got my IV prednisone and I can honestly say I’m getting worse than I was originally. My swallowing is labored and difficult, my muscles are twitching all over, burning under my feet, my arms and legs go numb many times a day, I feel tight in my chest and throat, and weird sensations and cobwebs everywhere. I can tell that I am NOT ok right now. So I emailed my doc, and he’d like to explore the possibility of this being a long term autoimmune disease.

      I did not have the biomarkers that they usually find in GBS or CIPD, but I know from talking to him and researching that a LOT of cases of CIPD/GBS do not have these biomarkers at all, and they are not extremely great tests.

      I am wondering if I should go ahead and accept it, and try the IVIG (at this point, I’m willing to try ANYTHING to make it stop), or if I need to be more forward?

    • B
      November 29, 2017 at 12:00 am

      I’m sorry you are going through this, but glad to hear that your neurologist is accessible and responsive to you. Have you had an EMG yet? My understanding is that is one of the primary tests to diagnose CIDP. (although to your point, you can have the disease without abnormal testing). Do you live in the US? If so, you may find it difficult to be approved for IVIG without meeting your insurance company’s criteria. But if your doctor is skilled in peer-to-peer medical reviews, that can be overcome.

      I was diagnosed with an atypical case of CIDP and my neuro looked at IVIG as therapeutic but also partially diagnostic. (ie if I responded to IVIG positively, we may be on the right track). His take was that IVIG is safe and harmless and worth a try, although one could argue that the side effects can be significant and the costs (financially, infusion time, downtime) are not to be overlooked.

      Some CIDP patients take steroids successfully without IVIG. Are you back on steroids? My doc was anti-steroids for me and I haven’t had them — only IVIG. (Infused today in fact).

      If you think IVIG is a good possibility, I’d get the ball rolling. It can take a few weeks to get set up (unless your case is emergent and then you can go to the ER, get admitted and be infused inpatient). While you’re waiting for that, you can further investigate your options. Best of luck!

    • November 29, 2017 at 9:30 am

      You know, I keep wondering why he doesn’t do an EMG but I think it’s because most of my symptoms are cranial nerve related, at least the troubling one. My case apparently has a strong affinity for the cranial nerves with problems from nerves IX-XII and very little weakness seen in most GBS cases. That plus the steroids working so well followed by a reemergence of symptoms exactly when the steroids begin to wear off has him firmly convinced its autoimmune, but not detectable by the typical blood tests. He also offered me immunosuppressants plus steroids but he said that I really shouldn’t have steroids more than 3 times a year and it was too soon after the previous steroid infusion to do it again.

      I’m inclined to try IVIG just to see if it works for me. As for insurance, it’s Kaiser, so anything the doctor does in Kaiser centers is automatically covered. It’s a blessing and a curse. A blessing because I often worry little about insurance coverage. A curse because it’s damn near impossible to get a second opinion – everything is managed care.

    • B
      November 29, 2017 at 4:23 pm

      You mention numbness in your limbs, burning in your feet and cobwebs everywhere. I’d ask about an EMG. I’ve also heard of docs doing EMGs on the face, although that sounds rather unpleasant!

      I know a lot of people are on ongoing oral steroids and monthly IV steroids. I’ve only heard the limit of 3 times a year related to something like a back injection. This forum is rather small, perhaps you could also post on one of the Facebook forums with 1000s of members and see what they say?

      If your financial situation allows, it may be worth it to self-pay to see a second opinion neurologist, ideally one affiliated with a “Center of Excellence” designation with this foundation.