CIDP/MMN/Miller Fisher: is it over?

    • June 28, 2017 at 12:48 am

      Hi! My name is Logan. So, I think I’ve had something GBS-related for the past three years. From what I’ve seen on this site, my symptoms have been fluctuating, but I haven’t made an effort to get answers for this syndrome until it recently flared up again.

      Too start, back in February of 2015, I got a free flu shot from my university and within weeks my right leg was partially immobile and progressively losing function. After falling over a few times trying to bend down, I returned to the campus clinic and, after a blood test, was informed I “might” have GBS. The local doc they were using told me not to worry, and that weakness and immobility in my limbs would cycle through my body and out of my system. Knowing what I know now, GBS has significantly worse systems, which I never experienced all at once. The loss of motor function went away, but sprang back up in my right hand a few months later. With this, I was more concerned: not only could I not control my grip or type term papers, but all feeling had left my fingertips, so I never knew what my hand was actually feeling. That, and a very painful rash popped up around my clavicle and chest. The itch was infuriating, but when I scratched it, the deepest, dullest pain crept up and radiated. After a nerve test conducted through my hand (the results of which were either a-ok or never received, but gave me no info nonetheless), I waited for it to go away. Later, in that same year, I had trouble speaking (my tongue getting tied after about 10 seconds of speech) and a little numbness on my scalp. When that too went away, I had problems with my remaining limbs from 2015—early 2016.

      Then, like that, it went away for the majority of 2016. I didn’t have much pain or fatigue of any sort, aside from rashes (which my excema always made me doubt as a symptom). In October 2016, I started having blurry vision in my left eye. Seeing as how bad eyesight is in my family, I thought maybe it was catching up to me. I got a prescription and mostly fixed that. Now, over half a year later in early June 2017, I was struck with double vision, followed by another string of rashes around my nape and clavicle. GIVEN that I had to get glasses, I thought this was another problem for the optometrist. The one who helped me and accepted my insurance couldn’t book me til nearly the end of June, but I accepted anyway because I trusted them. It was extremely disorienting for about a week, but after that, I sort of adjusted/had my girlfriend drive/etc. I also had fatigue climbing stairs and trouble balancing, often swaying when walking straight lines and bumbling around, which I thought was on account of disorientation. Needless to say…the double vision, and all other symptoms, went away about a week ago. When this happened, I didn’t know whether to feel excited or terrified, and the creeping suspicion that this attack was GBS-related came up. I immediately researched GBS/CIDP and discovered Miller Fisher syndrome (which matches my symptoms to a T) and MMN, which explains my “assymmetric” loss of motor functions. I had an appointment with a local GP this morning and, after explaining my situation, was talked down from GBS, but referred to a neurologist with the suggestion of a lumbar puncture or MRI to figure this out.

      I’m freaked about how infrequently this problem pops up, and I’m regretting not having it checked sooner. But, I need to know, has anyone experienced a mixture of GBS/CIDP/MMN/Miller Fisher, and is it common among a certain age group? I’m 24, but not knowing has me afraid this’ll sneak up on me all at once one day. I DEEPLY appreciate any feedback from y’all regarding what to do next.

      Thank you,

    • June 28, 2017 at 2:05 pm

      I have had more standard GBS (I think, always hoping it doesn’t end up being CIPD) so I don’t have a personal experience like yours. But I would like to encourage you to see a neurologist who specializes in autoimmune disorders. I have had a son with cancer (only about 50 cases a year are diagnosed with his particular type), a mother who has a rare autoimmune disease, and now my own (rare) GBS, and I can tell you I have learned it is beyond important to see the right doctor. Not just with the right specialty (neurology) but the right sub-specialty. Especially if you end up having CIPD (GBS is acute and doesn’t match your history very well), you need the right doctor to correctly manage it. I would look at the centers of excellence listed on this website and see if you can get into one of those, or research the neurologists in your city in terms of their sub specialties. It can make all the difference. I found that I could actually get into the center of excellence closest to me sooner than I can get into a neurologist who specializes in autoimmune here at home. Good luck to you. Be persistent and research!

    • June 29, 2017 at 1:18 am

      Thank you for responding! I had no idea about the centers of excellence, but fortunately there’s one in the next city over. Haven’t gotten a call from the referred neurologist, but if they haven’t by Friday, I’m definitely calling them up and, in the meantime, the center of excellence just in case. My condolences for what you’ve been (and continue to go) through, and again, thank you for your attention and encouragement.