Newbie/confused/frustrated/lost

[SIZE=”2″][COLOR=”Teal”]Good morning.
I have you in my prayers and thoughts. I had GBS over 2 yrs ago and was blessed as had a light dose.I will say you will not be doomed as you say to the chair.
You are blessed that a doctor was sent to you who knows what you have and how to treat it.I got 5 IVIGs over 5 days and it for me and so many starts the healing process.I got a bottle every evening and it took approx 4 hrs.
I went from a wheel chair to a walker to a cane to walking in 4 months.
I retired from the medical field and know you need to do something about your health other than CIDP.
There will be other great people writeing you and we feel we do know more than most doctors with our disease at times.
You have been blessed and you have a loveing support group and people who cares and now God has given you another go at life and liveing as you did will not get it this time.You will walk again and heal alot. BUT keep liveing as you were you will be in pain and see yourself going down fast. DO and LISTEN to your angel doctor and do not think you know best. You now are the PATIENT. GIVE THANKS AND THINK POSTIVE I have you in my prayers and thoughts and may Gods blessings and healing touch be with you,
Your friend (Lakoda)[/COLOR][/SIZE]

Hi Jeremy –

My 8 year old daughter has CIDP & it is absolutely NOT a death sentence. She’s starting her 3rd summer of playing softball.

IVIG is made up of plasma donations…meaning you are getting antibodies from donors. Some people have reactions to it but there are ways to ward those off by pre-medicating with Tylenol or Motrin AND Benadryl. Some dr’s prescribe a small dose of steroids beforehand too.

Have you had an MRI of your spine & brain?

Good luck & if it turns out you do have CIDP just know that you CAN get better. Most people improve dramatically after they start treatments. You might not ever be “normal” again but you will be able to do more than 15 minutes of activity!

Kelly

Welcome to your GBS/CIDP family. My heart & prayers go out to you. I am praying for you & so are all the rest. Yes it is amazing how great God is & how he works in our lives. It’s good that you have found a good neuro doc already. I understand about a lot of Drs. looking at you & not knowing what to do, also a lot of physical demise. Read all about Stem Cell Transplant. You are young & strong, Go for it if you can YESTERDAY! Read everything you can about GBS/CIDP. Ask as many questions as you can.
Love, smitty

When the doctor said “it’s CIDP but says the treatment is harsh and aggressive so she wants to be sure”, what she is probably saying is that she needs proof to show the insurance company so she can treat you. The IVIg isn’t really that “harsh”. Yes, there can be some side effects, but if you are pre-hydrated and pre-medicated they are usually tolerable. The treatment does take some time [4-6 hours].

CIDP will slow you down, hopefully only for a while. In the meantime don’t push it. If you continue to try push yourself you can do more harm than good. Right now you need rest. With proper treatment you might be back to where you were. I said might because CIDP seems to affect each of us differently. Having said that, the one thing we all share is the need to rest while the nerves are in the process of recovering.

Keep your sense of humor. As you said, you are blessed in so many ways.

Hi Alive & Blessed ;

I echo the comments of the others on the forum. You are fortunate in that you found a neuro who recognized your condition.
My husband is now 5 moths into this and has had no treatment in Canada yet. He did get 5 days loading does in NYC .We found a wonderful Neuro there but the cost was all out of pocket.

As for families- can anyone provide a reference for literature we can give to our families? None of them understand the disease and think that he should be doing more in order to get better. They don’t understand it is not like other illnesses…

Thanks and hang in there Alive & Blessed.

Kathy

Well met Alive&Blessed and welcome.

There are several treatments for CIDP. Don’t be discouraged if your spinal tap doesn’t come back definitive. CIDP is hard to diagnose. I do hope you get an diagnosis soon that your neuro can pin down so you can get started on treatments. The sooner the better.

Keep the positive attitude. Rely upon our God (He’s big enough). Thank Him for your family.

Know that we’re praying for you.

Gary

You have not posted lately, how are you doing? What’s happening with you? Update if you can.
Love, smitty

Hi Everyone….I am new to this forum, and have been diagnosed with CIDP in April 2010. I have had two IVIG treatments, the first one helped a little, the violent tremors in my hands subsided, temporarily. My second treatment produced no improvement at all. I developed foot drop at the onset, and now have to wear a brace. My neurologist feels that physical therapy is my only alternate treatment until my nerves and muscles start responding, and perhaps then the IVIG will have a better outcome. I have recently relapsed, and now I feel that I have no options but to live like this. I have a great pain Mgmt. dr. who is helping me with the pain, which is so severe, I feel like it would be a blessing if I just wouldn’t wake up. At times I am so frightened, I cannot believe that this has happened to me….how did it happen? Again, like the rest of you, no answers. I am so relieved to have found all of you, trying to explain symptoms to someone that doessnt have the disease is difficult. I hope my neurologist will suggest another treatment plan, so many of you did not respond to the IVIG, and you were able to find alternate treatments. I need advise, and information, if you can help. So nice to have met all of you, and hopefully I can stop spending 18 hours in bed, and start enjoying my life a little. I’m not asking for a lot, just a little better quality of life than I have. I would LOVE to take my dogs on a walk again! That is my long term goal, and I try to exercise, but am so weak it is difficult. Do any of you have such extreme muscle loss? Have you been able to rebuild your muscles?
Thanks for listening!
Carol
CIDP April 2010

Hi Everyone….I am new to this forum, and have been diagnosed with CIDP in April 2010. I have had two IVIG treatments, the first one helped a little, the violent tremors in my hands subsided, temporarily. My second treatment produced no improvement at all. I developed foot drop at the onset, and now have to wear a brace. My neurologist feels that physical therapy is my only alternate treatment until my nerves and muscles start responding, and perhaps then the IVIG will have a better outcome. I have recently relapsed, and now I feel that I have no options but to live like this. I have a great pain Mgmt. dr. who is helping me with the pain, which is so severe, I feel like it would be a blessing if I just wouldn’t wake up. At times I am so frightened, I cannot believe that this has happened to me….how did it happen? Again, like the rest of you, no answers. I am so relieved to have found all of you, trying to explain symptoms to someone that doessnt have the disease is difficult. I hope my neurologist will suggest another treatment plan, so many of you did not respond to the IVIG, and you were able to find alternate treatments. I need advise, and information, if you can help. So nice to have met all of you, and hopefully I can stop spending 18 hours in bed, and start enjoying my life a little. I’m not asking for a lot, just a little better quality of life than I have. I would LOVE to take my dogs on a walk again! That is my long term goal, and I try to exercise, but am so weak it is difficult. Do any of you have such extreme muscle loss? Have you been able to rebuild your muscles?
Thanks for listening!
Carol

IVIG usually you receive a loading dose of 5 IVIGs in 5 days then one every 3-4 weeks. The life of IVIG is about 21 days. Your neuro doc really need to step up the treatments. Just my oppinion. Ask around & seek a pro.
Love, smitty