Please Respect Junior Posters….
AnonymousJuly 31, 2009 at 9:12 pm
Okay-understand it this way:
Suppose someone gets a bad stomach virus, or flu, or pneumonia.
One of the symptoms is a high fever.
You’re given aspirin, (or tylenol), to bring down the fever. But the aspirin or tylenol is not the drug being used to treat the illness, as that would most likely be an antibiotic. The aspirin was being used to treat a symptom of the virus or flu—the fever.
If you read your replies, NO ONE SUGGESTED THAT YOU DIDN’T KNOW WHAT YOU WERE TALKING ABOUT!
What raised our eyebrows, is that your doctor has chosen not to treat the CIDP. Gabapentin is used to treat, simply, nerve pain.
Many of us here wish we could have been caught in an early stage, and have had treatment started in that early stage, so that we aren’t in the place where we are now.
All of us who answered you, answered you WITH respect. We just want you to learn more about this disease, so you will understand why we are ALL concerned about you, and that we would not like to see the CIDP progress in you. We try to give guidance, by suggesting a good website to go to, such as I did when I suggested you read about CIDP at the main website for CIDP USA. You will see there what the normal treatments are for CIDP.
Read your answers again–we entertain questions from new people here all the time, and they thank us for telling them where to learn more about this awful disease. Once you gain that knowledge, you will see why we are questioning your doctor’s view on this. And no one here will attempt to offend anyone new to the site–we are trying to give you guidance through the early stages of this. If treated early, perhaps you won’t end up in my shoes, of which many people here know what I’ve gone through–just ask someone here.
Do try to ask us questions. We will try our best to answer them. What one person might not know, another person here might.
Do keep in touch, as your CIDP progresses since Gabapentin will definitely not stop any progression.
We wish you all the best.
AnonymousJuly 31, 2009 at 10:50 pm
I’m sorry that your feelings are hurt but I read your original post, which I replied to, and cannot see anything that would upset you.
MANY, MANY, MANY of us here have dealt with dr’s who were supposed to know about CIDP & were lead down the wrong paths by them. Even I took my daughter, who was 5 at the time, to a dr out of a MDA clinic. She took my daughter off of IVIG, put her on steroids & refused to listen when I told her the steroids were making her worse.
Just because a dr says they are an expert on CIDP does not mean they really are. Most dr’s won’t ever see a case of CIDP in their careers – let alone be an expert.
I have researched CIDP extensively because my child has it. I know more than her neuro does about it. Dr’s need to know about many different illness, I just need to know 1.
I hope you continue to come here. This site is a great resource & has offered me so much support, even in my worst times.
AnonymousAugust 1, 2009 at 12:13 am
Dear fellow sufferer,
1.) I respect everyone. Please remember this above all else.
2.) Really, everyone here respects others. it is usually an informed, supportive site.
3.) There are times when we all suffer more, and times when our challenges are lessened.
4.) We all need a forum like this to share, vent, and support
5.) please use the site to speak your mind.
6.) I don’t think anyone is malicious. I do think everyone wants to help.
From those points, maybe some background helps.
The more we(the human race) learns about CIDP, the more we find how rach case differs, and how each case is similar. Generally CIDP is an auto-immune response to nerve damage. The immune system attacks inflamed myelin, the covering around the nerves(Or maybe the axons themselves are inflamed). In either event, the myelin gets eaten away and nerve function is impaired. Basically that is the beginning.
from that point….. In some people the immune response is very aggressive and the CIDPer goes downhill very fast, perhaps weeks or a couple of months. Sometimes the immune attack is slower and comes and goes in a cyclical pattern. Relapses and recovery, relapse and recovery. These cycles can vary from weeks to months, and in a couple of cases, years apart. And in other cases, the attack is slow and progressive. Sometimes the principal loss shows itself in the sensory nerves, you get numb. Sometimes it comes with muscluar loss, you lose strength.
Sometimes (most often) prednisone will make a difference, (but not with GBS). Most times IVIG will make a difference (but not for me), some people respond to chemotherapies that attack T-Cells, sometimes chemo that attacks B-cells, sometimes a mild immunosuppressant will make a big difference. Sometimes not.
I guess what I am saying is that there and many different and effective strategies for dealing with CIDP. There are equally a number of differing theories coming from the neurological community. So, where does a fellow sufferer go?
I have had four different neuro’s, One was too proud to admit he could not figure it out. He blamed it on my personal habits and did not pursue a real cause. That cost me 8 years. The second neuro founs out that it wasn’t anything “normal” and referred me to someone who could diagnose me. The third neuro diagnosed me. treated me, and cared for me until I could no longer afford his services. The fourth neuro was someone local. I thought I could help him learn and get treatment locally with him contacting my former neuro for advice. He wanted to see if it was REALLY CIDP, and did several repetitive tests before I figured out that he was lining his pockets with testing fees, and not doing me any good.
There are good neuro’s and bad neuro’s. I am not saying anything about yours, only mine. If you read back through other’s posts, you will find that my story is not unique, far from it. SOME Dr.s think that their poop doesn’t stink, that they are ALWAYS right, and that the patient has NO RIGHT to contradict anything they say.
Like I say, absolutely no disrespect to you. I hope your neuro is great.
Some people ask for more information, because sometimes it helps them offer a better opinion. The more we learn, the better patients we are, and the more we can help our Dr.s
I’d like to help you any way I can. I hope you stay here and offer to us the experiences you have had. Because we are all so very different, we can all learn from each other.
Stay with us, we all care
AnonymousAugust 1, 2009 at 10:28 am
I almost cried when I ready your post as we do want you to feel welcome here. I am somehwhat new at all of this as well. Like I said in a previous post, we were on a 6 month journey with our two year old daughter and we were seeing the CHIEF of Neurology. He told us that he was an expert in stroke but that he knew about what she had. I TRUSTED HIM and he is a very bright guy. He even teaches residents on a regular basis and is well published. He just did not know cidp. I started reading and reading and reading and I figured out she needed more. I contacted one of the top cidp doctors in the world and he said that he did not feel comfortable with her as she was 2. He refereed my to a doctor at Ohio State Medical Center who then referred me to another doctor. When I googled this doctor, HE HAS WRITTEN BOOKS on cidp. When made an appt. and he said why isn’t she receiving tx and we said the doctor did not recommend it. He was really mad and he put her on tx and she can walk and everything now. I ask him everytime I see him if she has permanent damage from no tx for so long and he said since she is 2, he doesn’t think so. I do not want my daughter to have permanent damage at two. The people on this site have helped me so much nd encouraged me to research things for my self. WE care about you.
AnonymousAugust 2, 2009 at 1:05 am
I have had a severe case of CIDP for over 7 years now; left with permanent residuals. I walk with AFOs & a cane, hands aren’t great, & I need a wheelchair for part of the day. I was originally dx with a very mild case of GBS in Duluth, MN on April 2nd of 2002 & given 5 Plasma phersis treatments. Even though I kept deteriorating, I was told that it was normal. Bt April 27th, I could no longer walk & had totally lost the use of my arms & hands as well. I would remain that way for almost 3 years. If I had been correctly dx with CIDP originally & given IVIG when I kept getting worse, I believe I would be in much better shape today. BTW I was a patient at Mayo in Rochester, MN from April 27th for 3 months!
I think poeple ask if one is sure if they have CIDP because through the years we have had so many come on, only to find out later on that it was CMT, ALS, or other neuropathies. It helps if one states what tests they have had (spinal tap, sural nerve biopsy, EMGs, NCS, MRIs, etc.) as then it is more likely that the dx is correct. Never feel offended by informative posts; as these people on this forum will give you more of their time than the majority of neuros out there. DO NOT quit posting, this has always been a great sight for newcomers to learn from. WELCOME!!!
AnonymousAugust 2, 2009 at 1:51 am
I have a feeling you are referring to me & I have to say that insulting you was certainly NOT my intention.
If you have spent any time searching this site you will see that EVERY new poster gets asked the same questions. It’s NOTHING against you. It helps all of us know what you’ve been through. MANY people have posted here thinking they have had CIDP & later found out it was something else. We try to help make sure that new posters aren’t on the wrong path. Again it is NOTHING personal against you. It says nothing about your knowledge of CIDP or if you are lying. They are very basic questions that are asked of ALL new posters.
I was asked the same questions about my daughter.
When you go to a new dr does that dr not ask questions regarding what testing you have had done?
The dr asks for the same reason I did – to help you. To offer the best advice for you. To get your background, to get to know you & your illness.
It was not to imply that you were lying. It was to gain information on your condition & what has lead you to a diagnosis of CIDP. That’s it. Nothing else.
I am extremely confused though by your insistence that people (possibly even me) are accusing you of lying & being disrespectful towards you. I personally NEVER accused you of lying & I am HIGHLY offended that you would imply that I did.
I felt that I was very respectful to you. It was NEVER my intent to be disrespectful towards you. And again I apologize if you were offended.
I am the type of person that if I think you are lying, I will TELL you. I will say to you very directly “I think you are lying”. I never did that. So I wasn’t accusing you of lying.
I hope you can move past this misunderstanding & see that I was merely trying to gain as much information as possible to help you.
I have apologized & others have stated that no one meant to be disrespectful to you. What else can we do to get past this? What will make you feel better?
AnonymousAugust 2, 2009 at 8:48 pm
I´m not going to enter the debate about what was misunderstood or not,
just to say that it would be good to know about others who never got ivig treatment.
What is the disease progress without the ivig or other immunosuppressants,
just having gabapentin or lyrica, the physiology rehab, vitamins, etc.
As him (fsoprano) I know how desperate would be when we read here about a treatment we
will never have because is to expensive or the health insurance do not cover it.
Now that i´m stable I´m quietly now, but when just diagnosed I started with psychotherapy
and resilience therapy, as the future was unknown for me, and was very upset and depress.
AnonymousAugust 5, 2009 at 3:30 pm
Many members are telling me to read up on all the meds, etc before I start talking about them….makes sense to me. I apologize to anyone who feels I am trying to cause debates here…I am not purposely doing that…..I was just surprised and thought this would be a different environment but it’s all understandable….and thanks to the supportive pm’s I have received. Again, my apologies to all.
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