Barbara, I am also on prednisone long timer unfortunately right now have been tapered down from my last hospital visit at end of Feb to 20 mg.
Julie, I am going to be cutting and pasting from our emails :O
I was dx Nov. 08. The hard part with mine was of course the dx. I spent about 70 days in the hospital in-between end of Sept. til Jan. I have been to the Mayo Clinic in Fl. My main treatment up until this point has been long time pred. which we def. didn’t want but I am now receiving IVIG. The unfortunate part is that I have stomach paralysis with this and every month I end up in the hospital “crashing”. They haven’t figured out how to break the cycle. They thought that it might be my cycle but after trying to stop it through birth control for 3 to 4 months….
Every time I end up in the hospital, being filled with iv (I have a port) pred and have to start the taper all over again.
My pain med at home had ended up being liq. methadone FOR CHRONIC PAIN and it was for 0.25ml every 4 hours. The stigma about this drug and the way that I am treated by NOT ALL but most emt’s and er docs is horrendous so much so that I realized it is not really helping my back pain but making me a jittery mess sooo…… cold turkey last Tue. bc went in on Wed. to discuss trying something different now not as strong. I am a completely different person then the one who was dying in Dec. 08. However my primary wasn’t there and NO ONE wants to touch my meds over there.
Julie, ETSU is a wonderful! Part of my medical family… I have the best top man Dr. Blackwelder however bc he is top he had warned me that he would not be there every time but of course follows along so I usually have to see the residents when in the hospital and in cases of I need to come in today.
Hello again! Yep! That prednisone helped me out at the beginning. Just keep inn mind that with many of our diseases there is trial and error! What may work for one person might not work for another. I tried the Rituxan and that made me sick as a dog. But some have tried it and it worked. Each one is different. But don’t get discouraged because sometimes they do have to experiment a bit until they get you on the right regimin! Good luck!
I’ve read up here and noticed one thing I too had pancreatitis problems before GBS and after. No known cause truly why after GBS especially because I had my gullbladder removed shortly before developing GBS. Mabye there is a link with that as well. It might be the uncooked chicken link as I was quite sick with a stomach flu before I got GBS as well. I got IVIG though so would not know the color of my plasma. Though that could be something to look into though after getting these residuals I got pancreatitis again twice in a row and was sick for a little over a month on IV because the levels were quite high mabye that could be the cause to thee residuals acting up or what is going on now.
The doctors still have no clue what exactly is going on but a got a flicker of a contraction in my upper leg today and now physio is willing to work on my legs. Which is good news and they started with electrodes but the muscles are quite jumpy. I also am noticing I am getting a lot of sweat from my feet and it is quite bad and physio said it is my autotomic nerves going haywire and my neurologist backed it up saying it is quite common after GBS. How do you guys deal with it.
Also I have been diagnosed with PCOD. Which is Poly Cystic Ovary Syndrome. I tried metformin but it just made me sick and birth control they can’t give as long as I can’t move my legs so it still keeps going but man do hate the diet I have to be on with it There is barely any thing I can eat.
Lacking 11 days on three months, I just want you to know I’m all right and amazed about all the curious things around me. Besides feeding and sleeping, I just learn, learn, learn!
Wee William sends his love to all of you through
“farmor Allaug”:) 🙂
Dubois, Pennsylvania……I was going to say Denver but that is not in Pennsylvania and it seems I don’t get out much! LOL
Dubois is in North Central Pennsylvania Beautiful forrests in that area! Lots of pine trees…..some our the largest Christmas Tree farms around here are in that area! 😀
For too long I let people talk me out of standing up for my self. As a result I am more disabled today than I would have been. So where it is CIDP or something else..LOOK THEM IN THE EYE..prepare your questions…list your pain levels AND symptoms with intensity and frequency…and give it to them IN WRITING.
As I said to one doctor in 1986, if it is depression or stress..help me with it as either I am NUTS given the horrible electric shocks and numbness plus…and need lots of help not bull crap and dismissal. The psychiatrist sent me back to the doctors stating that it looked like I had a neurological issue and that I was coping with it the best I could. Go figure that they still then sent me to the bone doctors and not to the neurologist. Anyway…LOOK THEM IN THE EYE…you have a medical problem…and need help….and I do not even give a hoot the diagnosis…just that you get some help with this.
Back in 1970’s I had bouts of the numb tongue and all kinds of strange stuff…so that even I was convinced that I was crazy. I remember praying that the doctors would find what was wrong and one doctor even stated, why do you want me to find something wrong…that seems sick! I replied…no you are sicker than me if you think nothing is wrong and I do not need some kind of help. He walked out … concluding that I was crazy. The easiest thing in the world is to intimidate and walk over people who are suffering but that is exactly what often happens.
So, in the middle of your symptoms you must be strong and stay focused. I have often said, that when you are sick, you must be well, in order to get better and get help.
The good news is that you are on the right track, doing your home work, learning, and finding skills to work with the doctors. So what ever the diagnosis and treatment…you are going in the direction of getting the help you deserve. Let no one side track you. Maybe you might want to put the doctors in contact with the GBS Foundation Dr. Joel Steinberg ( or the Neuropathy Association Dr. Norman Latov (212-888-8516 or the web at
[email]email@example.com[/email] for advice. They are both BRILLIANT and tops in the field.
Also there are too excellent books to educate yourself that can be obtained. One is from the Neuropathy Association at 212-972-1353 “Explaining Peripheral Neuropathy” e mail [email]firstname.lastname@example.org[/email] and another from the GBS/CIDP Foundation at 610-667-0131 email: [email]email@example.com[/email] “Gulliain Barre Syndrome” that covers CIDP and several other forms of neuropathy.
I also have copies of two articles that Dr. Latov wrote about the difficulty of diagnosing several types of these conditions that I gave to my doctors and this information was life saving for me. They are too large to attach here so if you want to do so, e mail me at [email]PRCGENE@AOL.COM[/email] and I will send copies to you in either Adobe format or Microsoft Word format…let me know which is best for you.