Looking for answers

Sarah,

When I had my first spinal tap, it was negative. Later, the neurologist who finally diagnosed me with CIDP said the first one done was probably done too early to prove it to be CIDP.

Is this a death sentence? I don’t think so! I was at the stage where I could only barely walk with assistance, sit up for only a few minutes and was extremely numb. A year later with MANY IvIG infusions, I am back to work. Am I normal? I have up and down days honestly. Some days I don’t feel well or am very fatigued. I take a day off when I am not feeling well to recover.

Know your body, when to rest, when to do things, when you don’t feel well enough to do things, etc. As you read through this forum (which I encourage you to do) you will find people with different symptoms effected differently. This is common, but frustrating as doctors sometimes aren’t real knowledgeable. I finally went to a doctor in Cleveland because of this. He had seen more people with CIDP/GBS. I trust his judgment better than my neurogist where I live.

With your doctor, don’t be afraid to ask questions. I would encourage you to have somebody with you to listen. I have the fortune of having my wife with me during doctor appointments and the early hospital visits. She heard the doctor say things I would never have remembered and was able to ask questions I didn’t think about. A lot of information was thrown at me. I was glad to have her with me.

Don’t know if this helps or not. But, you have a wonderful support system out here- even though you don’t necessarily see us! God bless and I will pray for you!

Dennis

Hi Sarah,

I know this is all really scary for you. There are people on here and whom I have met that had a spinal tap come back inconclusive, and yet still end up with a diagnosis of GBS, CIDP etc. This diagnosis whichever it is, is far from a death sentence. I just passed my 3rd year anniversary of having CIDP and I am doing quite well. The IVIG treatments stop the attack on the nerves and myelin, other meds such as Neurontin and Lyrica are used to treat the nerve pain. Each person whom I have met with GBS, CIDP etc have a different story, the onset, severity, recovery etc. seem to vary a great deal. Keep asking questions and welcome, if I can ever be of help please feel free to email me jerimyschilz at hotmail.com and I will be happy to help. Take care.

Jerimy Schilz

[quote=sbbear]Hi my name is Sarah, I am 30 yrs old and saw a nueroligst recently and diagnosis is pointing to CIPD-can you have a Spinal Tap done and have is not be positive and still have this? IS this diagnosis a death sentence? It is becoming increasing difficult for me to do my job-is there relief from the IV treatments? Does this get back to normal ever? So many questions..any input would be great. Thanks, Sarah[/quote]

Hello Sarah,
Welcome to your new family, where we feel what you feel. NO, this is NOT a death sentence. You CAN learn to live with CIDP and move forward with your life. There are different treatments that can be tried other then IV’s but your doctor may only suggest this if he/she feels IVIG is not working. When the progression is brought under control, you can be almost as good as new.

Hi Sarah,

Welcome and glad you found this site. I think it will remove some of the fear from what you are experiencing. Because of the often severe changes that happen suddenly, it is very scary, but most people do recover.

GBS is certainly not a death sentence. Death from this syndrome is extremely rare.

Please keep coming to this forum to get information. You will learn more here than you will from health care professionals, since this is a rare condition and most doctors have never treated a case of GBS.

A spinal tap can produce a false negative. You could still have GBS with a false reading. There is not definative test for GBS. Diagnosis is made by exclusion of other things.

IvIG is the treatment of choice. It is not a cure, but can stop the damage to your nerves. It’s important that it be given as soon as possible.

This is a condition that that improves very slowly. REst is the best medicine.

Best wishes,

Suzanne

Sarah,

When I was first going downhill, my family physician set an appointment up with a neurologist. That was a long wait.

Then, I was rapidly going down hill. The family physician then admitted me to the hospital. This was the quickest way for me to be finally seen by a neurologist, then start treatments asap. Just an idea for you to be seen more quickly- not sure if this will work or not. You may want to ask your doctor. However, I know somebody near me that went directly to Cleveland Clinic, which is about 5 hours from where I live. They admitted him through I believe the emergency room.

As far as insurance goes, you’ll have to call the company you have and investigate. I am sure all are different.

I know there are laws to protect disabilities. As long as you can perform your job, you shouldn’t have worry. With that said, I don’t know how far the law will protect you. I am sure somebody out here has been through the job problems.

Good luck and God bless!!!

Dennis

Hi Sarah,

Just wanted to send warm wishes your way!

Happy holidays!

Shannon

I completely agree with Suzanne, I have found out more here about our condition than any doctor. I also agree and have experienced that rest – de-stress is the most helpful medicine. I’m doing alot more resting these days and when I think I’m feeling normal and try to do more – guess what I have to rest again and again. The more I try to do the more I am down.
But I do get to get up for awhile. I have learned that I can’t over do it and I am the kind of eprson who doesn’t like to say no. I’m learning. All the symptoms come back when I’m tired. My face is still burning, but if I rest it goes away for awhile. Emotional stress really stimulates all the bad stuff. God bless you all.

Sarah,
happy holidays to you also. I wish you and your family a merry christmas together. I too take tylnol PM every night along with my Lyrica. It took a couple of night before the burning stopped with the Lyrica. I still have pain and pricks but no more hot coffee being thrown on my legs!!
Good Luck with the dr visit and keep us posted.

Hi, thought I would lend my 2 cents. I am also recently dx. It is scary esp. when you discover that the Drs. have difficulty telling you what is wrong. Now is the time when you will likely discover why they call it medical practice. Because GBS or CIDP are less well known and difficult to DX and because we all respond differently your DR’s will likely do some experimenting. After 7 months I am finely receiving IVIG and it does appear to be helping, but my DR. is very reluctant to make any prognosis for the future. I started out on Prednizone and it also seemed to help until after 6 months when they attempted to ween me off and I relapsed.

I agree with the others CIDP is not a death sentence but it is very likely requiring a change in life style. Do not lose hope. There will be opportunities to learn things about yourself and others that may not have come to you otherwise.

IVIG is very ex$. My ins does cover it. Be sure to ask and get it pre approved.

My experience is that your employeer will have to offer you medical leave under the Federal “family medical leave act.” Ask your HR person.
Good luck to you!!!!

Hello guys! I am from Kazakhstan. And my father was diagnosed with GBS one year ago then he transfered to CIDP! He was doing ok! But recently he was taking prednisolone, then he got sick and he had temperature about 2 months. Doctors said this is because of using prednisolone a lot. So he stopped taking prednisolone. So we are afraid now if CIDP reapets again what kind of medicine he can take? And Is CIDP reapets? And how often it reapets? Thank you for your help!

hi leylim,

cidp is chronic gbs, so it means it does repeat. it is better for your dad to be off prednisone. ivig or plasamapheresis [pp] are both better options for cidp. how often it is needed is done by trrail and error. ivig is less invasive than pp & every 6 weeks is somewhat of a norm. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Sarah:

I am also new to this site but this is one of the best of that I have found
not that there is not other good ones.

I had my problems start in 1971 and to this day I still am not sure what I have. But there sure has been some nice come backs with information. I
am finding things I did not know.

My only thing to give you and maybe you already have rec. it.
You asked about a Dr. close, After my own research and from some of the forum members I found I think who may one of the formost Dr.s, maybe in the World. Dr.Gareth J. Parry who just happens to be at the University of Mn.
Fairview. I think the e-mail is [url]www.umn.edu[/url] or just go to [url]www.google.com[/url]
and write in Dr.Gareth Parry.

Wish I could help you more but at this point I still trying to help myself.
But I can honestly tell you the members of this site are of a great help
and help you to feel better about yourself. Plus they know they are there or have been to. Pam called me a couple days ago, we must have talked for over a good hour.
Will be thinking of you and hang in there.

Silver Hawk
David in Duluth, MN