How bad do symptoms need to be before they show in test?

I am now stuck in diagnositic limbo and I would love to hear your experience. When did your tests begin to show demyelination and slowing? How bad were your symptoms at the time?

My situation: I am an otherwise very healthy female, 37. Had a flu shot last fall and then began to have weird symptoms shortly after. In the past 3 months, I have been experiencing progressively worsening numbness, tingling, prickling, burning sensation in hands, feet, arms and legs; hands and feet go completely numb upon waking up; muscle aches, soreness, cramps; legs, arms and shoulders all feel weak and noodle like and floppy; intension tremors in hands and feet; decreasing dexterity in hands; worsening balance and bad gait; shaky vibration sensation all over; night sweat; no stamina; cannot walk far without aches and cramps inlegs; severe fatigue. I still can walk but have cramps and tire easily.

All my symptoms have been slowly but surely getting worse. It just sounds like a typical case of slow onset CIDP triggered by a flu shot.

Then last week, which was 4 months after my flu shot and 3 months after the onset of my symptoms, I finally had a round of tests from my new neurologist. I was really hoping to get a firm dianosis, but all my tests came back normal. NCV, EMG, spinal tab. Extensive blood work. Clean MRI of neck and head. Negative ANA. Normal segmentation rate. No diabetic or thyroid issues. Basically picture perfect everything.

While my symptoms slowly worsen and clearly indicate something is not right, without abnormal test results to back up a diagnosis, my neuro is adopting a wait and see approach, which makes me very very nervous. I am at a loss at what to do?

Any advice? Those of you received all normal tests but have CIDP, how did you finally pin down your diagnosis? Just wait until you got worse and things finally showed up? How long did it take? I hear it could take years. Anything else I could ask to test?

Many many thanks in advance.

It took me about 4 to 5 months before they finally diagnosed me with CIDP. They did all kinds of blood work, spinal taps, nerve conduction studies, etc. It was not until I got with a Neuromuscular disesase specialist who diagnosed me. She did one nerve conduction test and confirmed it. I was told that if the proteins on my spinal tap was elevated that it would for sure be CIDP. They were not. So just because everything may look normal, sometimes you have to get to a specialist to know for sure. I had similar symptoms as you, so just make sure you get to someone who specializes in CIDP or Guillian-Barre type diseases. Don't wait until it gets worse, because if you do have CIDP, it will get much worse in a short period of time and can become really difficult for you. I hope this helps.

Jon, thank you for sharing your experience! I am hoping to get an appt to a specialist but it will be weeks before Icahn see him.

May i ask a few more questions? When you were diagnosed, what were your symptoms? Did you have foot drop, etc? Was there a preceding event like a vaccine? Thank you again!

I understand there can be a lag of time before tests show abnormality. I am just trying to time it so hopefully my next test will show something. I am quite sure I have CIDP but I won’t be able to get treatment unless I have a diagnosis.

I feel for you. I was in that position for over a month and it felt like an eternity. I started having pains in my left hand fingers. As it spread up my arm my right side started to do the same. I thought it was carpal tunnel. I made an appointment with a surgeon. By the second week my arms were heavy and I went to the doctor because I was feeling very worried. He did the standard neurological exam. I didn't have reflexes anywhere. I couldn't do many of the things he asked me to do. I wasn't aware of how bad I actually was. He said it looked like gbs but couldn't be because it doesn't start in the hands. He sent me for many tests. Everyday I would loose an ability like buttoning or opening a jar. I would call him every day while waiting on the results. On the 3rd week I drove to his office fine and I stopped for gas on the way home. I couldn't start the ignition that I had just shut off. I was loosing that fast. On the fourth week still waiting on results that the doctor's office finally admitted they had lost. That same day we went to an emergency room at a major medical center. I knew what ever I had wasn't going to wait for the initial doctor to figure it out. By the time I went to the emergency I couldn't walk by myself. I needed help getting up from a chair. I couldn't dress myself and the fatigue was really bad. They admitted me and did dozens of tests. The emg/ncs showed severe demyelination. My spinal was normal the first day and slightly above normal by the 3rd day. My sediment rate was normal. They continued to test to rule out many other things. They started me on ivig after the 3rd day to see if it would help because I was continuing to crash everyday at the hospital. They diagnosed me with a gbs and talked about cidp because we were into the 4th week. If there's no evidence of demyelination, or inflammation there cannot be a diagnosis of cidp. I would think there has to be evidence of at least those two points because so many other things can cause weakness. I would be happy to share the tests they gave me of things they ruled out so you can talk to your doctor. I will do anything to help. I am kind of struck by your weakness coming on after a flu shot. I have been doing a lot of research on mitochondria. Mitochondria can be damaged by certain medications and mercury in particular. Mercury is still used in vaccines and can stack up over time. If you eat sushi or lots of seafood can add to it and that may cause such a reaction. One of the tests they gave me was heavy metals. Maybe you've already covered the heavy metals but if you haven't I would get tested, mercury included. I think having a backup plan may also help. There's a study at the National Institute of Health. They also give tips and resources to help. Here's a link.

Trust your instincts, keep looking for answers. Do things to help with the stress because stress makes everything worse. I wish you all the best including finding that you have something much better than cidp.

Mabes, thank you for sharing! I would love to know what other tests I need. I already had heavy metal done, all normal. Maybe i can have a neuropathy panel blood tests to see if it is a variant, like anti mag?

My theory is that I am just not bad enough yet for the tests to show. At least I hope that is the case. I hope I am not one of those who will always have normal EMG and spinal protein. I honestly wouldn’t know what to do if that is case. Nerve biopsy?

So now I wait. But in the meantime I am terrified, watching myself decline, knowing i could be crashing and becoming paralyzed any day. What a horrible disease.

Glms, sorry for the late reply. Before they diagnosed me, yes I did have foot drop and could barely walk up stairs, could not run, couldn't stand on my toes, couldn't open a bottle of water, etc. It was mainly weakness that was affecting me. I did have some tingline and numbness in one finger on my left hand as well as some tingling in my feet. I originally went to a neurosurgeon who wanted to repair some bulging discs in my neck. Went to another neurosurgeon for second opinion who said that the discs were nothing out of the ordinary for someone my age (47 at the time). They sent me to a neurologist who ran several tests and then referred me to a neuromuscular disease specialist. In terms of what I was tested for, they checked for metals, hiv, lyme, west nile, etc. It was not until they did a second nerve conduction test that they confirmed it was CIDP. I had IVIG and this worked great. However as I mentioned I got a chemical meningitis headache that was brutal. I ended up getting plasma exchange and this works better for me. Now I may have to have permanent port put in to get this on a regular basis. So in summary, I think you may need to have a nerve conduction test and then they will know or should know if you have demylienation. And no, there was no preceding vaccination or anything. I have no idea and neither do my docs on how I got this. Let me know how it comes out. I can definitely tell you about my experiences over the last couple of years since being diagnosed. It is not fun, but if you do have it, just remember there are much worse diseases and this one in most cases is treatable. Just have to figure out what works best for you. That is the hard part on top of just the unknown. Hope this helps.

gslm said:

Jon, thank you for sharing your experience! I am hoping to get an appt to a specialist but it will be weeks before Icahn see him.

May i ask a few more questions? When you were diagnosed, what were your symptoms? Did you have foot drop, etc? Was there a preceding event like a vaccine? Thank you again!

I understand there can be a lag of time before tests show abnormality. I am just trying to time it so hopefully my next test will show something. I am quite sure I have CIDP but I won't be able to get treatment unless I have a diagnosis.

Jon, thank you for the encouraging words. I am still deteriorating. My balance has gotten worse but I can still walk. Thankfully my neurologist hasn’t abandoned me and he agreed to watch me. My next appointment with him is in mid March and I hope he can run another round of tests.

It is a wait game now but I am definitely terrified. The flu shot clued me in so I know it is CIDP. I have a chance to catch it early. Just have to wait for it to show up on tests.

I would love to hear about your experience in the past two years. My current plan is as soon as I am diagnosed, I will ask to be put on ivig and maybe prednisone. I hear ivig has the least side effect.

Jon, another question if you don’t mind. When was your first nerve conduction test and when was your second ncv that finally diagnosed CIDP? And what were your symptoms like at each time? I am trying to gauge and figure out when to ask for another ncv test. I don’t want it to be too early again.

My neuro is a neuromuscular specialist and supposedly knows GBS CIDP well and he performs the test himself.

I was diagnosed around May of 2012. I had my first ncv about a month before that. It doesn't matter how long in between but after the first one, the neuro I was seeing was uncertain about diagnosing for CIDP (although he suspected it) because my proteins from the spinal tap came back as not being elevated. That is usually a tell-tell sign. When he referred me to the neuromuscular specialist she did another ncv and said that she felt confident it was CIDP but wanted to treat me with IVIG to see if that works and if it did she would know for sure. And it did. They can tell from an ncv if there is demylienation. Yes, I did the IVIG but as I stated before it caused me severe headaches. I did it twice before and got the same results. It worked but the headache was unbearable. The next time my symptoms came back the did plasmapherisis. I have had that twice now. The first time I got IVIG I was good for about 8 months. Then I got it again when the symptoms came back and it only lasted about 6 weeks. Then I went in the hospital for plasmapherisis and it lasted 6 weeks and then I went back in for another round. I have been ok since leaving hospital around thanksgiving. I have now been on prednisone and Imuran for about 5 months (started before last plasmapheresis) and hopefully that is what is keeping me in line for now. If symptoms come back again, they may have to install a permanent port. I go back to doc first of March, so not sure at this point. It is a journey. Hopefully you will get some results soon and they will figure out how to best treat you. Don't hesitate to ask me more questions. I was just like you, in that no man's land kind of place. But it gets better. Take care and keep me posted on your progress.

Your diagnosis can NOT be made strictly with diagnostic tests. There are no real diagnostic criteria out there for doctors to point to and say, "THAT is CIDP." No, the biggest indicator of CIDP is the physical examination and clinical presentation. My blood work and EMG both came back normal, and my CSF protein was only mildly elevated. But, my neuro's physical examination was a different story, and he diagnosed me with CIDP based on HIS clinical findings, not what the tests said.

Your diagnostic tests may never come back abnormal, but that doesn't mean anything. They know so little about this disease, right now. I would find a doc that understands CIDP. Some people discourage doctor shopping, but in this case I highly encourage it. The more you wait, the more progressive the disease becomes, and the damage can become permanent. Please continue to look for a doctor to treat you, not wait.

Jon and eaetaylor, thank you for your information!

Jon, sorry about the late reply! It sounds like you have a good response to treatment! I pray it keeps that way for you. My problem is every test is still normal. Including EMG. So my neuro’s hands are tied and he can’t start anything. Was your first NCV also abnormal? I have a lot of symptoms, tremors, vibration, muscle ache and spasms, numbness and prickling, zapping, etc. I can’t walk for more than 100 yards without severe leg muscle aches and twitches. I haven’t lost much strength yet, but stamina is shot. Maybe the key is I need to lose strength before it shows?

Eaetaylor, you are lucky you were able to start treatment with normal tests. I totally agree with you that tests mean so little but unfortunately my neuro believes in them and I hope my neuro will agree to it at some point. At least he is not abandoning me and promised to watch me through until I get a diagnosis. I am thankful.

It is frustrating and scary to think the disability level of the rest of my life will depend on my neuro’s whim. I know it’s CIDP but there is nothing I can do about it at the moment.

In the meantime, thank you again for keeping me sane.