Hello 23 year old, probable CIDP

Hi & welcome!

The dr making you wait 2 weeks for a test result is a load of crap, in my opinion. I would call the dr back, explain to him/her that you are very antsy & anxious & you need some answers. Ask her to please give you the results over the phone, so you can start researching your possible illness and be a better informed patient for her.

If your EMG showed a conduction block a year ago & demyelination a year ago, what have the dr’s done to treat it?

There are variants of CIDP which are more sensory than motor. If you Google “sensory CIDP” I’m sure some great links will come up.

Good luck,
Kelly

PS, remember that dr’s work for YOU. Sometimes I think they forget that.

EMG results are instantaneous. The dr doing the test can read it right at the time it’s been done. There is no reason to wait for EMG test results.

My daughter has had 3 EMG’s & the most we had to wait was 1 hour while one dr spoke with another.

Did they take blood? That may be the hold up on the test results but they should still be able to discuss the EMG results with you.

Don’t worry about being a pain to the dr’s. That’s what it takes sometimes. Trust me…I’ve been through it with my daughter.

Kelly

She experienced symptoms in Sept. after having her immunizations. We took her to the dr many times & were told it was just growing pains. She had a flu shot in November & was hospitalized on Dec 27th, 2005 & dx’d with GBS on Dec. 28th.

I thought you were waiting on the EMG results, sorry.

It sounds like your dr is doing things in the right order to get a firm diagnosis. It will be important to have those blood test results. They probably did some genetic testing & that’s what is taking so long.

Kelly

welcome
I hope you get your dx soon. My son, Ryan who is 20 and a college student was dx in Dec 2008 with CIDP. we are on our second neuro and soon to see our 3rd. He is scared about his future with this disease also. It’s very scary not knowing what kind of life you will have. Ryan is currently in a wheelchair he is hoping and praying its just temporary. He is also on meidcaid and he also gets social security and disability checks every month. He had to prove he could no longer work his job and the doctora had to .write letters and send documentation of his illness. So it helps.nHe is looking at getting a car and having hand controls put on it so he can drive. he needs the hand control since he can’t use his feet. It will allow him to have some more independence so he doesn’t have to rely on me so much. I don’t mind but he does. Then he is hoping to be able to go back to school this fall. That will be harder cuz I will worry about him. he will be almost 2 hours away. But we still have a few months left before we have to worry about it.
well i just wanted to say welcome and I hope you get your answers soon. Ryan gets on here alot and reads the posts maybe now that there are some young adults on here he will post himself.
Good luck
Rhonda

Kelly,

There is another neuropathy called Charcot Marie Toothe (CMT) that makes a similar presentation. There is a marker on a gene, and they may have wanted a genetic test to see if it is CMT or not. They can rule it out with the genetic test.

As for CIDP, my presentation was very slow at first. I knew something was wrong, but nobody could confirm it for a while. Like you, I went through a period of years before treatment. Then, the Dr.s took a cautious treatment plan, because I wasn’t too bad.

THIS PART IS MY OPINION.

After diagnosis the treatment was equal to the level of physical damage. I still had a lot of function, only sensory loss. They started me out with prednisone and an immunosuppressant.

I wonder, if they hit me hard with IVIG and an aggressive treatment THEN, would I be so bad NOW.

I don’t mean to scare you, but you sound like you are starting like I did, and I really don’t like where I am now (10 years later.) I have always wondered about how I would be if my treatment were more aggressive.

I hope it doesn’t turn out to be CIDP, but if it is, get good aggressive treatment from the start.

Dick S

I haven’t posted in a while, but I still lurk so I can keep tabs on everyone.

I’ve been experiencing CIDP symptoms for a few years now. My legs are getting progressively weaker and my balance is getting worse (make that nonexistent). I’ve gone through two neurologists and I’m now on my third. The experiences I’ve had with neurologists may or may not be the norm, but I’ll gladly share them with you.

I think it’s safe to say that most neurologists have little or no experience with CIDP or any of the other autoimmune conditions. Many neurologists don’t believe patients when they describe the weakness and the pain and the loss of balance. If they do believe patients when they present with symptoms of CIDP, they will follow the standard IVIg textbook treatment of 400 mg/kg. Unfortunately, this dosage is far to low for many patients. If the standard dosage doesn’t have a beneficial effect, they’re at a loss as to what to do next.

Unfortunately, many patients’ experiences mimic mine, and they go for years without getting proper treatment. Meanwhile, the nerve damage progresses to the point where that damage may be permanent.

I’ve had one office visit with my new neurologist, and it was like a breath of fresh air. He listened to what I had to say and expressed amazement that my previous physicians were reluctant to increase the IVIg dosage to the current recommended level, which is 1 gm/kg for two successive days. Since I weigh 220 lbs., that dosage would be 100 gms of IgG per day. The highest dosage that my previous physician would administer was 60 gms per day.

He’s also ordered new NCV and EMG studies. His position is that since I haven’t responded to prednisone, or IVIg, or Plasma Exchange, we need to determine whether I have CIDP or some other autoimmune condition.

So, now that I’ve laid the groundwork, here’s my point. My new neurologist is Dr. John England. Dr. England is Professor and Head of Neurology at the LSU Medical School in New Orleans. He specializes in CIDP. I wasted three years dealing with neurologists who either don’t see many CIDP cases or who don’t believe in aggressive treatment, before I found Dr. England. If I had found him three years ago, perhaps I wouldn’t need my cane and/or AFOs and perhaps I could now walk more than 100 yards without stopping to rest.

I was referred to Dr. England by Dr. Richard Lewis, with Wayne State University, in Detroit. I located Dr. Lewis through recommendations of others on this forum. When I contacted him by email and asked if he’d accept me as a patient, he responded within 30 minutes. In his email response, he said he’d be glad to accept me as a patient, but he asked why I’d want to come all the way to Detroit when two of the best CIDP experts in the country were at LSU Medical School, just a three hour drive from me. To cut to the bottom line, I immediately contacted Dr. England’s office and was able to set up an appointment about 30 days later.

If your current neurologist treats few cases of CIDP and/or if he/she isn’t willing to listen to you and to begin aggressively treating your condition, you need to locate someone who deals with this stuff on a daily basis. I found Dr. Lewis to be very responsive. If your medical insurance and your situation will permit, perhaps you can go to see him in Detroit. If not, then I suggest that you could contact him and ask him to recommend a neurologist in your area. His email address is [EMAIL=”ralewis@med.wayne.edu”]ralewis@med.wayne.edu[/EMAIL]

Don’t delay!! Best wishes to you.

Rod

Hi!
CMT DOES NOT have to be hereditary. There can be a spontaneous mutation. It presents the same way as cidp physically as well, it looks the same on a ncv/emg. A spinal or nerve biopsy would be difinative proof. Kevin had this as his second dx, his first dx was that it was psychological, until he kept getting worse and we went to another doc. The 2nd doc said CMT because of the similar presentation. I was sure thats what it was and researched it, however, I discovered that it would take years to get to the state Kevin was, unable to walk or use hands. These symptoms happened over about 4 weeks. I may be behind in reading your posts, so excuse me if I am in error, but the blood tests do take longer, but the MRI should have been that day or the next if the radiologist saw something. Incidentally, I would agree with you it is more cidp than cmt. as cmt has no relief from steroids or anything and you stated temporary relief from steroids. I would say the flu shot was your culprit. Being a nursing student, if you get ivig, any immunizations in the future would not work because of ivig. Good luck, keep us posted.
Dawn Kevies mom

Hi Diagnonsense,

Love your screen name, its pretty much covers what alot of us go through gettting that darn confirmed diagnosis. Read over your post, Sure sounds like
CIDP. The spinal taps take 6 or 7 days to get a final culture result, Like Kelly said EMG’s are instant and should be done by the Neuro not a tech.

Back to the spinal tap, mine was neg. I have multifocal CIDP. Hitting the criteria is important, in my case I had lots of focal blockages, was negative on HNPP(heredetary Neuropathy with tendancy for pressure palsey). Spots on the brain. I had negative or worsening with Prednisone. They waited til
I was sliding down the steps on my butt before they did a trial of IVIG. That worked.

The doctors always seem wooshey washey until they see you in severe distress. If left untreated CIDP can put a hurtin on ya. If it affects breathing, and the autonomic system, It can put you down.

We all become disgusted when we see the same things happening with others that happened with us. So with that said. I wish you luck. If you don’t trust your Doctor, get another but I suggest not having too many doctors involved at once, it slows things down.–Tim–