Sorry to hear things aren’t well.

I had a thought…is it possible to get a letter from your doctor saying that you are not well enough to travel that far?

What kind of transportation are they going to provide?

Is it private so you can sleep? Will you be able to lie down?

My thoughts are with you, good luck

Let us know what happens

Consider Dr. Mark Brown at UPenn. He is generally well regarded in peripheral nerve diseases.

Would the University of MN be out of the question? If not, I would strongly recommend my neuro there…you said you cannot affor a neurologist, are you without health insurance?

Hi Diane,
If you will be anywhere near Summit, New Jersey, I can recommend someone that I consider a really great neurologist. He used to be my neuro when I lived in New York, then he moved to New Jersey. His name is Dr. John Halperin and he is at Overlook Hospital AtlanticHealth. Google hospital, you might find some info.

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

Stacey,
I’m here anytime you need someone to talk to, you know that I understand how much you can miss a mom. I haven’t been posting too much and I get behind in emails because I’m trying to get packing done for a move, get my mothers house (now mine) cleaned out and ready to sell (no one from family is helping me yet) and I just keep push push pushing myself to get things done.

My doctor wanted me to stay on just IVIG’s, so I listened to him. Always remember that another important purpose of IVIG’s is to CONTROL the progression. I rarely felt stronger or felt improvements, I always just felt the same, not better, but never worse.

Have you tried any of these things??
1. Call our foundation to see if they can recommend a doctor.
2. Look at the doctor referral on Neuropathy Association, you may have to join.
3. Do a doctor search through webmd
4. Call or find a web site for university hospitals in your area for doctor referrals.
5. Ask your family doctor if he/she can order the meds you need for awhile so you can try home infusions. Will give you time to find a neurologist so you won’t do without.
6. If there’s no other way until you have another doctor, find out if you can be admitted to emergency room for infusions/meds.