I started my first ivig treatment in october. I spent five days at the hospital that time and then I cam back three weeks ago and got another three doses. On wednesday this week I came in for treatment round three. I got double dosage days one because of the lack of response. Yesterday I came in for dose two. They then explained to me that they wanted to take a break in the ivig and let my body recover a bit to see if that helps in getting effect from the ivig.
To further complicate things I have two consecutive positive ANA-test that indicate that there might be some kind om reumatologic problem.
The thing that worries me right now is the lack of response from the ivig and the fact that I had a positive babinski on my left side.
I have gained vibration sense on my right foot but on my left side the lack of vibration sense has spread up to the knee.
My achilles reflexes are gone but my knee reflexes are very obvius.
A while ago my legs started (off and on) getting stiff and aching, and that has also started to happen in my arms.
Does anyone of you get any thoughts about this? I know that babinski implicates upper motor neuron problems. How likely is it that I have CIDP?
I hope you are able to read this and that my english isn´t all too bad. I am from Sweden.
I have POEMS Syndrome. It is much more rare than CIDP, But is often mistaken for it as the Neuropathy is so obvious. I was initially Dx’d with CIDP and kind of responded to IVIG, in so far as it stopped further loss. I went on CYCLOSPORINE for 9 months, then they suspected POEMS AND Stopped further treatments. BEFORE they confirmed POEMS and began treatments, I began to recover some function and sensation. Ask them to consider POEMS as few drs know or recognize it initially.
Best of luck to you!
What was the test conducted to confirm POEMS? I have MGUS and CIDP. Im waiting on bone marrow results. Please reply. Im beginning to think I also have POEMS rather than CIDP based on symptoms.
Capt001Mike said:
I have POEMS Syndrome. It is much more rare than CIDP, But is often mistaken for it as the Neuropathy is so obvious. I was initially Dx'd with CIDP and kind of responded to IVIG, in so far as it stopped further loss. I went on CYCLOSPORINE for 9 months, then they suspected POEMS AND Stopped further treatments. BEFORE they confirmed POEMS and began treatments, I began to recover some function and sensation. Ask them to consider POEMS as few drs know or recognize it initially. Best of luck to you!
Don't assume anything. I was diagnosed by a numb-skull neurologist with ALS. I also have MGUS (no progression) and definitely CIDP. I responded to IvIgG treatment for CIDP when the dose went to 240 grams / month. You have a 50/50 chance of having CIDP or ALS or Lupus or MS or a hundred+ other neuro diseases. Does that help? Of course not, but you could also get hit by Swedish lighting or get bit by a rabid reindeer. You, like me, obviously have neurological problems. Whatever the diagnoses, fear is actually much worse than any disease. CIDP sucks, ALS sucks, reindeer rabies sucks, but you adapt to change. Sweden is on the forefront of neurological diseases and care and insurance. You could be in Mali or Maui (like me) and wonder where the first-world advances in medicine are. Consider yourself lucky, make the most of life and don't let any disease bring you down spiritually! Read up on neuro related diseases. Information based on available facts are the most reliable.
Caution - MGUS can be associated with CIDP however you can have MGUS with no association with CIDP. In fact there are many people (otherwise perfectly healthy) who have MGUS and will never know unless specifically tested.
BEWARE the neuro who jumps on an indication of MGUS and says "Ah! - That will be the cause!". There is a good chance they are being just plain lazy, not doing the full diagnostic spectrum and looking for real causes. Anyone who has done their research on peripheral neuropathy will quickly realise there is a great deal that nobody knows. Perhaps a reason for that is shoddy diagnostic investigation by neuros because it is just too easy to "blame" the "obvious". That was my original neuro. Initial tests showed a MGUS indication. Even though the haematologist almost immediately clearly said the MGUS was insignificant and most unlikely associated - guess what? That even stuck through a second neuro but my wonderful haematologist has now written a quite pointed review of his original work (since confirmed by ongoing precautionary testing).
