Initial Stage And Have Questions

I have some questions…

Who diagnosed you? Was it a neuro? Are they familiar with CIDP?

What tests were done to come to the conclusion of CIDP? Most people don’t get a diagnosis of CIDP right away.

CIDP is a PROGRESSIVE disease which, if left untreated, will cause more damage. In my opinion it is EXTREMELY unwise to leave CIDP untreated until you progress. I actually think any dr recommending so should have their medical license revoked!

I understand any concern about getting IVIG with your IgA deficiency – I would be concerned as well. But there are other ways to treat CIDP & to stop the progression. You can try steroids, plasmapheresis & other immunomodulating drugs. You do NOT have to wait for CIDP to progress before treating it.

The longer you leave the CIDP to progress the more damage is being done to your body. The more damage that is done means it will be harder to recover. Right now you are experiencing tingling. That tingling will progress to extreme pain & to not being able to walk. If left untreated it may even affect your autonomic nervous system which controls bladder & bowel function, respiration & heartbeat!

My advice would be to get yourself to another dr. One who is more familiar with CIDP and demand some kind of treatment. Like I said, it doesn’t have to be IVIG but you need SOMETHING.

Good luck,
Kelly

As a CIDP person of 16 years I agree with everything Kelly said and underline and BOLD it all. You really need a second informed opinion and if CIDP you need to get started with treatment.

good luck!!

You will find people to talk to here, who have gone through it all.
Anytime you have questions, just give a shout here, and people will reply.
There are some good people here, of all ages, (unfortunately, it hits kids as well).
But back to you…
You have to do a lot of reading to see what you have, (CIDP).
And you need to see what the normal protocol of treatment for CIDP is.
A very good place to start is the CIDP USA Foundation site:
[url]http://www.cidpusa.org/[/url]
There is a lot of very good information there. You really need to learn about CIDP, as I think you need to ask the neuro you now have, WHY THEY HAVE DECIDED NOT TO DO ANY TYPE OF TREATMENT.
You have been put on a drug that helps with nerve pain, (neuralgia).
It is NOT a drug used to treat CIDP–it is used for a symptom of CIDP.
Here is a website to go to, to learn about Gabapentin, (Neurontin):
[url]http://en.wikipedia.org/wiki/Gabapentin[/url]
Most of us here are on that drug, as it helps with the nerve pain, (I am as well, as I use to get what felt like electrical shocks in my spine, and would come on suddenly, and make me jump a couple of inches off the bed, as it was very painful, and would startle me).
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It all comes down to you. YOU are the one that needs to gain knowledge of the nasty critter, (CIDP). YOU are the one that needs to write down your questions to bombard your doctor, and YOU are the one that needs to get answers as to why they have decided not to treat CIDP in it’s early stage, and to let it progress.
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Like I said in the beginning, we are all here to give you some good advice since we have been through it. ANYTIME you have a question that the doctors are answering you, try it here, and I am sure you will get an answer or some advice.
I personally have been through ALL the normal protocol of treatments, and can tell you what they are like. I could go on about myself, but would rather you read up on this.
There is a yearly Symposium, where doctors and patients of GBS/CIDP meet, and the doctors discuss new developments and treatments.
Unfortunately, because this is a rare disease, there is not the super-research that is done on more well known diseases like MS, MD, and even ALS.
(By the way, MS and ALS are sister diseases to CIDP: MS affects the Central Nervous System, CIDP affects the Peripheral Nervous System, and ALS affects both nervous systems.)
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And if you’re just plain having a really bad day with this–just rant and rave here…many have done that, and people really care here.

Welcome aboard this awful ride…
KEDASO

Hi there and welcome! I don’t have CIDP but had GBS many years ago. I am not someone who can share any experiences around CIDP but I have been on Gabapentin.

Gabapentin is used to block the neurological pain that most of us experience. It is also used to control seizures. My take on this would be that they are trying to numb the tingling sensations, etc. as these can be extremely annoying and/or painful. I also know from my reading and research here, that there are very specific treatments that can be used to slow the progression of either disease and that the sooner you start on them, the better chance you have of slowing the progression of CIDP. But I am not a dr. or a healthcare professional so all I can relate to you is my personal experiences with gabapentin.

There are many differing opinions out there on how to treat CIDP. The GBS/CIDP foundation has some great information packages that they will send out to you if you are interested and perhaps you have already had them do it. These can help you understand your illness and how it should be best treated. Do what you feel is best for you. I always say we are our own best advocates!

I look forward to hearing how you are doing. Take care….

fsoprano,

I read your other post regarding treatment of junior members and would like to provide you some feedback. The advice you are getting is because the folks that use this site really care and have great experience and the reason I come to this site is to gain from their experience so I don’t have to learn the hard way.

That said, Gabapentin is used for pain control and does not stop the progression of CIDP. That is why so many are giving you advice that you need something more.

From the website on Gabepentin:

[I]What is gabapentin?
Gabapentin is an anti-epileptic medication, also called an anticonvulsant. It affects chemicals and nerves in the body that are involved in the cause of seizures and some types of pain.

Gabapentin is used alone or in combination with other medications to treat seizures caused by epilepsy in adults and children who are at least 12 years old. Gabapentin is also used with other medications to treat partial seizures in children who are 3 to 12 years old.

Gabapentin is also used to treat nerve pain caused by herpes virus or shingles (herpes zoster).

Gabapentin may also be used for other purposes not listed in this medication [/I]

The concern your fellow CIDP sufferers have is that you are not receiving anything that will reduce the demylenating effects of CIDP which means you most likely will get worse. When I first complained of the same symptoms you have, I was blown off by my doctors telling me I should expect things to change once I hit my 50s … however, 8 years later and finally a diagnosis, I’m having trouble getting this illness into remission. All the websites I’ve visited and all the information my neurologists gave me states early detection and treatment leads to a better long term prognosis. I was told if treated (and again, Gabapentin is NOT used to reverse the demylenating process but is used for pain mgt) early then usually it took only one round of IVIG treatments to put this thing in remission and keep it there.

That is why you are receiving so much advice – everyone is concerned for your well fare and concerned that the actual illness is not being treated, just some of the symptoms.

With CIDP, education is your best friend. I trust my neuro, but with EVERY prescription he gives me I always check the internet to learn what I can. The most effective treatment for this illness is to be a partner with your doctor in your care and treatment.

I wish you great success,

The questions I asked are basic questions I like to ask new posters. It helps to know a little about how you ended up with a diagnosis of CIDP.

Like others have said Gabapentin is used to treat the pain. It does NOTHING to stop the progression of the disease. It is NOT a treatment for CIDP. It is a drug used to help with nerve pain.

CIDP is treated by immunomodulators such as IVIG, steroids, Methotrexate, Cellcept, etc.

Most people do not get a diagnosis of CIDP right away. Most get diagnosed with GBS then when they relapse it is then diagnosed as CIDP. Also CIDP symptoms are VERY similar to many other illnesses. It’s easy to be misdiagnosed with CIDP or another disease to find out later on it was CIDP. That’s why we like to find out how you go to the diagnosis of CIDP.

Someone mentioned cidpusa.org. I have to disagree with the use of that website. I have found much of their info is not accurate.

Do a Google search for CIDP & read as much as you can. Here are 2 links to help you get started:

1) [url]http://www.ninds.nih.gov/disorders/cidp/cidp.htm[/url]

2) [url]http://autoimmunedisease.suite101.com/article.cfm/cidp[/url]

Kelly

Yoou have received some fantastic advice and I am sorry you are dealing with all of this. Learn from these people as I did and do not make the mistake that I did. Our doctor had a wait and watch attitude with my two year old daughter and she went MONTHS and could hardly walk. I looked and looked and found a great doctor in our area. Please let people know where you live and who you are doctoring with. The watch and wait doctor that we had was the CHIEF OF NEUROLOGY at a top 10n hospital. She is now receiving ivig and can walk and run nurmally. Please don’t wait and let everyone help you.

Hi,
900 mg of neurotnin may not be working for you, it can go as high as 3000. Lyrica also is a very effective nerve pain medication. About treatment, there are other options, pp would be the tx with te least long term side affects, steroids help but are not a long term solution. there are other immunosuppressants as well, but they too do not come without side effects. good luck.
Dawn Kevies mom

Hi,

Neurologists treat CIDP in different ways, and what works for one person doesn’t always work for another. For example, after having a small relapse, I saw a doctor who is an expert in CIDP (in New York City), and was recommended by many people on the forums. His way of treatment varied from the way my retired neurologist treated me, and subsequently I got much worse. But I’ve been through this many times before, and I know how I feel when things are working and when things aren’t working.

I went through about 8 months of non-effective treatments when I first was dx’d. I don’t think it did any damage long term–it was just frustrating. So even if the course of treatment you’re on now doesn’t help, don’t think there will be permanent damage. And if it does work, that’s great!

But if you get worse, please make sure your neuro knows, and if he doesn’t start trying new things, look for a second opinion. Good luck! I’m sorry about your dx.

-marie