Peripheral Neuropathy & Churg Strauss Syndrome

Hi.  This is a difficult one.  I've recently been diagnosed with Churg Strauss.  Since June, I've been experiencing tingling in arms, hand, feet.  It wasn't severe and has not kept me from normal activities.  I had and EMG/Nerve conduction about 5 weeks after symptoms began which came back normal or inconclusive.  I keep a note of symptoms but haven't much worried about it.  Recently, I began having tingling in my face ... from ear to ear and on forehead.  It is not numb to the touch, but very tingly and consistent.  The pins and needles in my hands and feet seems to be worsening, and I'm experiencing 'hot spots' on the tops of my feet.  Sometimes my hands feel like I have rubber bands around the wrists.  Could this be a side effect of any medication?  I'm currently taking methotrexate, prednisone, bactrim every other day, actonel, and folic acid.  I don't want to worry needlessly, but it doesn't seem to be getting better (even on the higher prednisone doses).  Most other symptoms related to CSS are maintained (blood work is normal).  Any suggestions or advice would be greatly appreciated.

[Abhijeet Deshmukh, MD]

Hello.

The symptoms that you are having are due to a polyneuropathy. It is likely to be Mononeuritis multiplex. All this means is that different peripheral nerves are affect in a progressive manner.

Almost 2/3rd of Churgh Strauss Syndrome cases develop mononeuritis multiplex. The symptoms are motor as well as sensory disturbances.

Please consult your neurologist and discuss the management of the neuropathy.

Regards

[renep73]

Thank you for your response.  Does prednisone have any effect on EMG results? I had been on 40mg (down to 20mg) for approx. 3 months prior to the EMG/Nerve Conduction.  Is it common to get normal results, when in fact you may have a polyneuropathy?  Is there any other way of testing or is it worth re-testing?

[Abhijeet Deshmukh, MD]

Hello.

There is no evidence of prednisolone affecting the outcome of EMG/NCV study. But if you are in doubt, you may go ahead for a fresh study.

Regards

[Abhijeet Deshmukh, MD]

Hello.

As is true for any diagnostic test, there is a chance of a false negative result in EMG / NCV also.
A repeat test reduces the chances of a false negative result.

Regards

[agirltech2]

Hi,  I too was diagnosed with Churg-Strauss.  I lost the feeling in both feet, so I couldn't walk, I also have a paralyzed rt hand.  My feet sometimes feel there are bands around my ankle or real tight socks, especially at night when I am lying down, the neurologist told me that this feeling was normal whenever there is nerve damage.  The nerves can grow back, only it takes a very long time.  I too was taking Prednisone, methotrexate, gabapentin, Oxycodone, you name it for this illness.  The drugs were worse than the disease.  I quit all drugs, of course I slowly tapered off the prednisone and decided to go to a nauropath.  I am beginning to walk a bit now, whereas prior to my stopping all these debilitating drugs I couldn't get out of bed, and when I did, I used a walker and often fell!  Now I can shop a little and my energy and brain are back.  I don't suggest that you stop your meds, but I would suggest you seek a second opinion from a Naturopath,or an M.D. who practices Naturopathic medicine and a nutritionist.  Supplementation is so important.  I just believe there are other ways to approach this illness than by wiping out the immune system or suppressing it with drugs.  I believe our immune system can kick in if we build it up.
Good Luck to you whatever you decide.

[agirltech2]

If you would like, please feel free to email me at ***@****.

[RamblingSeminarian]

Same here...CSS patient...also have issues with neuropathy.