Features Of Cidp

[Victoria]

I found one of my electrodiagnostic tests from 2007 and the conclusion is I have an asymetric peripheral polyneuropathy. Features appear for a mixed neuropathy of both axonal and demyelinative type.

On the nerve conduction test I have absent right and slow left sural sensory nerve conduction velocities, reduced peroneal CMAPs and reduced left peroneal distal motor conduction velocity.

I'm going to try to find someone to help me. It seems I may have Chronic Inflammatory Demyelinating Polyneuropathy. In the meantime I'll continue taking the Alpha Lipoic Acid.

[arizona girl]

And no body told you and put you on a treatment plan? My doctor here in arizona treats a lot of people with it. Some are on oral remittant meds with or without plasmapheresis or IVIG. They have a web site. Google phoenix neurological associates. They have medical info on the site. If you call or e-mail then they may be able to refer you to some one in your area.

See your not crazy, stressed by the situation yes, but not crazy. Does that internist know about this medical report? The right kind of neurologist should be able to treat you. As far as your pain meds until then, do you have any pain doctors on your plan. Many regular doctors are moving away from treating pain and sending their patients to doctors who specialize in pain management.

I've met a few cipd patients, during my treatments, that is why I sort of recognized the symptoms you posted. I only reply to post that are within my circle of personal knowledge and experience.

Good luck to you now, you are empowered with the knowledge you need to get the right treatment. Your son can only benefit and get treated sooner then you did, if this is genetic.

I pray the path to the right doctor goes smoothly and the door opens quickly for you and the long journey to treatment is at hand.

[Victoria]

And no body told you and put you on a treatment plan? My neuro at the time (2 hours away) thought I had Myasthenia Gravis and she prescribed Mestinon. Some time later I ended up being hospitalized in CCU at the UIHC with respiratory insufficiency and some muscle paralysis. They started me on prednisone and sent me home. I ended up back in CCU with the same problems and they prescribed prednisone. While I was there they ruled out MG with a repetitive nerve stimulation but didn't do any other electrodiagnostic studies. Heck, they didn't ever use a hammer on me to test my reflexes. If they had, they'd have discovered my deep tendon reflexes are nil. They discharged me to home after four days. Four days after I got home I received a psych appt. in the mail.

My doctor here in arizona treats a lot of people with it. Some are on oral remittant meds with or without plasmapheresis or IVIG. I Googled your doctor's office, got their email addy and asked if they could refer me to someone competent in Iowa. I'm waiting to see if I hear back from them.

See your not crazy, stressed by the situation yes, but not crazy. Does that internist know about this medical report? He has a bunch of my records in his possession, but I don't think he read them. I will make SURE I hand it to him at my next appt. I always knew I wasn't crazy. Mistreated, mishandled, harmed and stressed? Absolutely!

I've met a few cipd patients, during my treatments, that is why I sort of recognized the symptoms you posted. I would still be lost if you hadn't posted that info to me. Thank you from the bottom of my heart! You have empowered me with knowledge and hope. Thank you thank you thank you!

[arizona girl]

Oh your so welcome, but you already had the knowledge you needed and were starting to put the pieces together. You would have figured it out on your own, happy to have helped you find the path quicker.

I don't know how on top of their online e-mail they are, so, if you don't hear from them in a week or so, give them a call. If they don't know any one to recommend in your area and your insurance will let you see them, I would trust how they test and diagnosis there. Then hopefully you could get treatment closer to home following their treatment plan for you.

A lot of us here have had problems with ER visits, were they try to blame anxiety or pschy. The last time I went, I had a WBC (infection) in the 19,000 and I had the lab work showing I was immune deficient and needed to get on iv antibiotics. Not something you can get done a doctors office. He tried to tell me that sometimes wbc just go up for no reason, what a joke! I should report him. I did get what I needed, but still!

Good luck, hope the doors open quickly for you now!