Went to ER

Hi Carolyn! I hope you feel better soon and they get you help too! I’ve been there just like you and it is frustrating dealing with a doctor that don’t listen or care! Not all of them are bad but there are a few that want to go by the book and sometimes going by the book can cause alot of problems for the patient. Hope you find a better doctor that will make you well again! Hugs!
Linda H

I think that Dr. Latov runs some sort of neuropathy clinic in NY. Not sure, but for some reason it sticks in my mind. He is a doc that has written some books on gbs/cidp. Try googling? Sorry no concrete help.
Dawn Kevies mom

Hi, Carolyn. I hope that you are going on the uphill side. I know last week you said that you have a stomach flu and this might make things take a down turn as any inflammatory process also causes non-specific reving up of the immune system. It does not necessarily mean that this is a second episode–it is more likely still that it is a setback of the last one, although only time will tell for sure. I saw that you got IV IgG in early August. Was there a plan for another course–this might help if there is ongoing damage from the first time still. Listen, I know you are nervous about this having been a stomach flu last week and you had one before all this started, but the course does not seem like previously, but you know that better than any of us or that your Dad might have related from his perspective. Another thing to say is that stress makes people worse. I have not heard a explanation of why this really is, but it is–from personal experience as well as lots of others stating so. Stress changes a lot of chemicals in the body (cytokines) and probably alters the immune system. If feeling worse is a setback from inflammation associated with stress/worry about the flu, this is probably the best as it is more easily settled down again. Whatever it is, try to rest as much as you can.

You might try to contact your local liason with the GBS/CIDP Association and see if they might know someone to refer you to. You can also search this forum using keyworks like “New York City” and “neurologist” or whatever place is near to you. It is also worth knowing that, sadly, there are not a lot of experts out there for GBS and lots and lots of doctors get more knowledge from reading than from the patients they have seen with the diverse symptoms that they may have. This is not always back if they do not think that one account is the only way something can be and, even more importantly, work with you to help you through the manifestations that bother you.

Keep you chin up and don’t get discouraged. There often are step backs as well as steps forward.

WithHope for a cure of these diseases