Mystery – is it CIDP or not??

    • Anonymous
      July 2, 2013 at 1:49 am

      Hi,

      I currently have mystery symptoms and I’m searching for a diagnosis. Transient bilateral quad muscle weakness was my first symptom, then came transient nerve tingling bilateral knees to ankles and transient saddle region tingling. They came and went for a few months then went away for 2 months completely. July 2012 out of nowhere quad muscle weakness comes back, it has been constant ever since and has been getting progressively worse, I also have a feeling of heaviness like I’m being pulled into the ground. Transient tingling also came back. Now occasionally I get a warm burning feeling from feet to mid-thigh. I can still walk and stand but walking around the grocery store is my maximum. The feeling of heaviness is now moving up my back, my head occasionally feels heavy as well as my upper arms. I also have a tremor or vibrating muscle feeling when I’m in light sleep phase, feels like my muscles are vibrating like a tuning fork. I’ve had lots of blood work which is all normal. I’ve had 4 EMG/NCVs in the last year – all normal, the last one was 1 week ago. Any exercise – which at this point means any amount of walking or standing really makes my symptoms worse. I had to squat down at the grocery store to look at some items on the bottom shelf and my quads were burning within seconds, I was then weaker for the rest of the day. What is puzzling is that I have a completely normal neurological exam, no apparent weakness – when they do the strength tests I appear relatively normal, no sensory loss, I have quick reflexes.

      Has anyone out there had CIDP that presented like this?

      It sounds like my symptoms are so similar to those of CIDP – but I have no EMG/NCV damage – and I have brisk reflexes (they’ve always been brisk).
      I’m trying to get this diagnosed quickly so I don’t end up in a wheelchair but so far I’m not having much luck with the neurologists, no one seems to know what I have.

      Thanks!!

    • GH
      July 2, 2013 at 2:23 am

      The “D” in CIDP is for “Demyelinating,” and this causes persistent weakness. If you are not experiencing weakness, I don’t see how it is CIDP. But that said, I’m not going to diagnose it. Only your neurologist can do that.

    • Emilys_mom
      July 2, 2013 at 2:58 am

      Some people with CIDP have nearly normal EMG’s. No one knows why.

      Some other tests you should have are an MRI of your brain & spine. This should be done with & without contrast, a spinal tap to check the protein levels in your spinal fluid & blood tests for SED rate, ANA, and CPK.

      It doesn’t hurt to have allergy testing done as well. Some people experience muscle weakness & tingling from different allergies – including food allergies. You may need to find a DAN (Defeat Autism Now) dr in order to get the appropriate allergy testing done – they seem to be the ones most interested & up to date on this subject.

      I know it must be frustrating to know something is wrong with you but to not have answers. Keep searching for a dr that can help you. If you can, get yourself into a bigger medical center – like Mayo or John’s Hopkins.

      Good luck,
      Kelly

    • Anonymous
      July 2, 2013 at 12:26 pm

      Hi GH,

      My main symptom is chronic quadricep weakness, started a year ago and has been getting gradually worse. That’s why I’m wondering about CIDP.

      Thanks!

    • GH
      July 2, 2013 at 12:41 pm

      Ok, but you say “transient.” So your strength returns? On what time scale?

      But Emilys_mom is right, you need additional tests and possibly another doctor to make the diagnosis. The spinal fluid (CSF) test is a usual one for GBS and CIDP, but it may be too early for that. It also can be negative for CIDP if taken too early.

      If your doctors can’t get the diagnosis nailed down, at somepoint it would be advisable to go to a large medical center better able to diagnose it. There are some of these designated as “Centers of Excellence” for treatment of GBS and CIDP. In what part of the US (or elsewhere) are you?

    • Anonymous
      July 3, 2013 at 1:50 am

      Hi GH,

      Only the tingling I get in my legs is transient. The quad muscle weakness is not, it has been constant for the last year and slowly getting worse.
      I am scheduled for an MRI with and without contrast soon, all my blood work is completely normal. I’m just wondering if I don’t show anything on the EMG/NCV if anything would show up in CSF fluid, also what should be tested for in CSF fluid.
      I am in the Dallas area – anyone heard anything about UTSW?

      Thanks!

    • GH
      July 3, 2013 at 4:11 am

      University of Texas at Houston is a Center of Excellence:

      http://www.gbs-cidp.org/home/get-support/centers-of-excellence/

      The CSF test for GBS and CIDP checks for an increase in protein concentration. This is the test that Guillain and Barré used to characterize the syndrome. It may not show the condition if it is not sufficiently advanced, however.