Can anyone please tell me how diminished your reflexes would normally be if you have CIDP? I am still trying to find a diagnosis for what is going on in my arms and legs. All the tests seem to be borderline for CIDP (i.e. slightly raised protein levels in the spinal fluid, nerve conduction tests indicate demylination. My ankle and upper limb reflexes are 1+ and my right plantar was going down but left one was extensor). I had IVIG treatment over a few months (I'm in New Zealand so it's paid for by the public health system fortunately) but this has now been stopped because the neurologist now thinks I probably don't have CIDP as nothing has changed. I'm wondering is this a good enough reason to come to that conclusion as I've read IVIG only has a 50 - 70% success rate?
I would suggest getting a 2nd opinion. The same thing happened to me. Process of elimination combined with my symptoms lead to them diagnosing CIDP. They gave me IVIG, loading dose followed by several more, but it did absolutely nothing for me. Based on that, they concluded(erroneously) that it could not be CIDP because they thought IVIG worked for all CIDP cases. At that point, they concluded that I had ALS and should expect to live only a month or two more.
Calling our family in and telling them that was hard, but I still didn’t fully accept it. I overcame my fear that my neurologist would be insulted, and told him that I needed to get a 2nd opinion. To my relief, he was not insulted (of course he shouldn’t be, after all I was the supposedly dying) . He just grinned and said “that’s what I would do”.
We made some calls and got me up to Mayo Clinic. They knew that not responding to IVIG cannot rule out CIDP.
They treated me with plasma exchanges and heavy steroid doses and that began my recovery.
Make sure your doctor knows that even though IVIG works for many of us, it does not for all and he needs to try something else.
Thank you Jeff! I’ve been thinking a second opinion is what I need. Do you know anything about reflexes please?
Only from the receiving end of the neurologists little hammer.
I do know that prior to diagnosis and treatment my reflexes were diminishing, ultimately down to nothing. That was in my months of total paralysis and extreme atrophy. As my treatments kicked in and the myellin slowly began to regenerate, so did my ability to move my limbs and so did my reflexes.
At my last neuro checkup in April, he was excited that my reflexes were close to normal. So it took close to 18 months to come back.
Coincidentally, I see him tomorrow, so it will be interesting to see where they are now. I am pretty well in tune with my body now, and am fairly certain I’ve had some degree of relapse, so I’ll be pushing him to schedule another EMG session and possibly another series of plasma exchanges. The relapses are very subtle, but my legs feeling a little wobbly along with intense pain at night are warning signs I’m not going to ignore.
The thing is that reflex tests seem to be a little imprecise. They are certainly a useful diagnostic, depending on the expertise of the hammer swinger, but I think they need to use other diagnostic tools as well. Nerve conduction tests indicating demyellenation should not be ignored in my opinion. Another important diagnostic test is to examine the actual nerves for inflammation, but that means a nerve biopsy. In my case a piece of sciatic nerve was taken via a deep three inch incision in my left butt cheek. THAT was Mayos final definitive piece of evidence leading to my CIDP diagnosis.
I’m no doctor, but I wonder why a doctor would place inordinate faith in banging a hammer off your legs over other less subjective tests.
My symptoms began in May of this year. Began with falling, abnormal gait, numbess/tingling in bilat upper extremities, fatique , inability to climb stairs,etc. I have had zero tonal reflexes in my lower extremties since that time. I started IVIG in Aug with great results after the loading dose, but the symptoms have returned after my last treatment 2 weeks ago. I saw the neuro last week and tonal reflexes are still absent. Hope that is helpful
Jeff said:
I would suggest getting a 2nd opinion. The same thing happened to me. Process of elimination combined with my symptoms lead to them diagnosing CIDP. They gave me IVIG, loading dose followed by several more, but it did absolutely nothing for me. Based on that, they concluded(erroneously) that it could not be CIDP because they thought IVIG worked for all CIDP cases. At that point, they concluded that I had ALS and should expect to live only a month or two more.
Calling our family in and telling them that was hard, but I still didn't fully accept it. I overcame my fear that my neurologist would be insulted, and told him that I needed to get a 2nd opinion. To my relief, he was not insulted (of course he shouldn't be, after all I was the supposedly dying) . He just grinned and said "that's what I would do".
We made some calls and got me up to Mayo Clinic. They knew that not responding to IVIG cannot rule out CIDP.
They treated me with plasma exchanges and heavy steroid doses and that began my recovery.
Make sure your doctor knows that even though IVIG works for many of us, it does not for all and he needs to try something else.