Susan–To answer your questions: I started monthly infusions, but then my blood pressure dropped so low that we had to stop. I am seeing a different doc to decide if I need to continue or not. My doc was affiliated with an infusion center and kind of strange. I liked that he understood CIDP and GBS and was a great doctor, but not that he was making money off of getting on people on infusions.

I am located in Philadelphia, PA. How about you?

When I click on the link that to try and find a liaison, it doesn’t work. Also, I used a liaison reference provided to me by someone on the site and the email didn’t work! I also originally got in contact with someone who was a liaison when the link was working, and that person stopped emailing me. People are people and they have lives, I understand, but it doesn’t make it any less frustrating when you are trying to get help! I hope you can find a better one, too.

I am on MANY happy pills, haha. I have some psychiatric conditions as well. So, that’s fun.

I am sorry to hear about you and your husband’s struggles. It is an isolating disease because no one really knows about it. When you mention MS people get it. But you mention GBS or CIDP and people are like…huh? When I came into my college classroom with a walker one day after not using one all semester everyone said, “What happened?” I just responded, “Nothing happened. I just use this sometimes.”

Electra–Like I mentioned to Susan, the liaison I had original contact fell off of the face of the earth. The other one that someone recommended does not exist, apparently! And the link is now broken. 🙁 I made a post on a local site seeing if anyone wanted to get a GBS/CIDP group together, so we will see if anyone responds. I also filled out a volunteer application for this site in my area. Hopefully that will help me meet some people!

For everyone–Isolation is no fun. We need to keep trying to find ways to keep ourselves busy. I will take Susan’s advice and try to find a craft group. Maybe one exists in my area!

I was diagnosed with Guillain Barre Syndrome at age eight. I am assuming it was the Miller Fischer variant (I don’t really remember and my family has since passed on). It started with double vision, like many others. I still get double vision when tired and I definitely have some balance problems. I also have been diagnosed with CIDP now, so it is hard to tell the two apart sometimes. It gets very frustrating.

I also cannot read things sometimes, I don’t really know how to explain it. But if I am trying to read my phone sometimes I have to close one eye. It’s so strange! I feel like it’s definitely a residual from the MFS because I had to wear an eye patch when I had the MFS as a kid to correct the double vision.

Good luck to everyone dealing with residuals!

Hello,

I saw this lecture and loved it. This doc is top notch. He actually made me rethink my current doc attached to an infusion center. I think it is in this talk that he says to be wary of them.

That, and of course, chosen family had been saying it all along but I’m stubborn.

Anyway. If I had money, I’d pay to see this guy. So knowledgeable and articulate!

Hi everyone,

I just had an EMG today and learned I have axonal neuropathy. I wonder if it is Axonal Guillain Barre, as I was previously diagnosed CIDP. I see my Neurologist on the 23rd of June; another doctor did the EMG. The doc doing the EMG said all of the nerves that she tested in my lower extremities and low back have slow or absent response. We are doing the upper body at a later date.

I have some of the exact same experiences as many of you, having random sensations, pain, etc. But one that struck me is that my last two fingers on both hands intermittently go numb. Especially when holding things.

I wonder what my Neurologist will have to say!

I am receiving IVIG at home starting this Friday. I will be getting a 5 day loading dose.

Good luck everyone!

Liam