When I first came down with CIDP, I was unable to eat for the first few months, as everything tasted like metal to me (even water.) I lost 30# very rapidly, which really worried the doctors & nurses, but little did they know that in the next 21 months I would gain nearly 80# on steroid infusions. This feeling in her chest, is it like a band rapped around that section? I have never heard of buzzing in the chest, but anything is possible with this illness I have found. Has she been given any form of treatments for CIDP? BTW what wonderful & caring friends she has, for that she is lucky…
Pam

Dorrie

Welcome, you do sound so caring for your friend…that’s wonderful. I lose
my taste of foods just before I start heading towards more weakness. It
seems like nothing tastes like anything. When I get that way, I’m close to
infusion time.

Does your friend have a neurologist that she can go to so that she will get a
proper disgnosis? As with Pam, has she been given any treatments?

Miami Girl

Hi Dorrie! You are a great friend, there should be more people like yourself! The only thing I’ve really noticed, in regards to appetite, is that I’m not hungry for meat. I was always a “steak and potatoes” kind of girl, and now I don’t even like to cook it, much less eat it. Is she seeing a neuro doc with whom she could discuss her changes in appetite with? Everyone is so different. Sometimes medication can alter the sense of taste also.

Dorrie,
Better to be proactive and get her some help now. Contact the foundation, they can help you to contact people who understand and can help treat what your friend is going through. IVIG and plasma pheresis don’t “cure” anything, but they can help stop anymore damage from being done to the nerves and their various structures. There are good people out there who can help, she doesn’t have to stop living her life. Education is the best cure for fear. If she has a better understanding of what is happening to her body, she will be better able to cope with it and find things that work for her. What a wonderful person you are for helping her through this confusing and difficult time in her life! Encourage her to seek out help, I’m sure she will listen to you. Have a great week!

Dorrie,

There are some liaisons in MA that you could call who may be able to speak with you or point you inthe right direction. Sometimes speaking to someone is such a HUGE help and clears things up a little. I will name some towns/cities where there are liaisons and if you tell me which one you guys are near, I can private message you the details. I promise that speaking with someone who listens and is understanding is wonderful!

Here are the towns : (Boston) Ipswich , Springfield, (Cape Cod) Brewster.

Yes Kelly, it does happen with many GBS/CIDP people.

Hi Kelly – I’ve noticed I’m not as hungry as I used to be pre-CIDP. Unfortunately, my sweet tooth hasn’t lessened! But I do notice that when I get symptomatic, food just does not appeal to me at all! Good luck and good health!

Kelly,

I don’t eat as much but then I think it because I not as active as before the illness.

Kelly,
I wish I would lose some of my appetite. That would help me lose some weight. I know, be careful what you wish for.

I still have no problem eating. I wish I could eat alittle less. Food just taste so good. 😮

Hi Kelly,

Since I have developed CIDP and are now off steroids I have absolutely no appetite. It is to the point where I forget to eat through out the day. Most days I have to make a conscious effort to eat and only consume about 1/4 of my suggested 1900 calories recommended by my nutritionist, and other days not even that. It worries me because I continue to loose weight that I don’t need to loose. My nausea is so bad that food just doesn’t appeal to me. I try to supplement my diet by drinking Boost or Carnation Instant Breakfast.

Emily