Multiple Diagnosis’s

[DesperateFamily]

On 2/15/2006 I posted a message on this site which is archived under Neuromuscular titled Tingling and Numbness with Rapid Paralysis.  In Oct of 2005 my mom started feeling a tingling, numbness and burning sensation in her right hand and left foot and by February 2006 she was completely paralyzed from the neck down.  During this time, she was under the care of Mayo Clinic.  Finally in April 2006 after many tests they diagnosed her with ALS.  We brought my mom to Emory University to see an ALS specialist(by this point she was almost dead.  She could not speak, or swallow anything but yogurt and could not even hold her own head up).  Through a physical exam Emory diagnosed mom with PNS vasculitis.  They immediately started her on Cytoxin treatments(that day) and intravenous steroids.  My mother has recovered since that day.  She now has most of the use of her upper body back and can stand with a walker as long as you help her up.  My parents are back in Florida and mom is under the care of a Physiatrist there.  For some reason he has decided that mom is still misdiagnosed .  He does not think she has PNS vasculitis and agrees with Mayo’s original diagnosis that she has ALS.   He is basing this on a nerve and muscle biopsy that Emory did about 4 days after my mom was diagnosed which came back negative and an EMG he did recently(he said her nerves tested normal).  So my questions are this; could my mother have ALS and recover to the point that she has?  Is the nerve and muscle biopsy always conclusive when diagnosing PNS vasculitis?(meaning does it ever come back normal when the person does have PNS vasculitis?).  Also could the fact that my mother received 7 rounds of plasma exchange(at Mayo), 8 rounds of IvIg(at Mayo) 2 rounds of IvIg(at Emory), 1 Cytoxin treatment and 4 days of intravenous steroids have effected the test results?  This DR. recently took her of Nuerotin which is a medication she has been taking since being diagnosed by Emory.  Within a day of discontinuing this medication her feet were burning like they were on fire.  She went back on the nuerotin and the burning was gone by the next morning.  Also, the DR. has mentioned that my mother might have Steroid Myopothy.  Could the Myopothy be the real reason her legs are not coming back as fast as her arms?  Her lower legs seem pretty strong but her upper leg muscles and hips don’t seem to be working.

[patsy10]

This is the patient to patient forum.  The doctor question forum is the other one "neurology and neurosurgery forum".  I would try to get a post in there.  From my understanding ALS does NOT go away, only gets worse rapidly.

[larajake]

I agree with Billsdaughter.  I just e-mailed a minute ago and much of this is all too familiar....Guillain Barre Syndrome.  Did she have the flu not too long before the onset of her condition. Many elderly people get Guillain Barre after experiencing the flu.  My husband has roomed with many elderly or people when he was down with one of his many set backs with Guillain Barre.

[DesperateFamily]

Does anyone know if all of these posts get addressed by an actual nuerologist from Cleveland clinc?

[Billsdaughter]

I have seen some people with ALS and they don't get better from what I have studied of that. Have you considered Guillain Barre Syndrome? some people become quite paralyzed, even on a ventilator then often recover. No real treatment but that plasma exchange is done to try to help as it may be autoimmune. Pacific Medical Center, San Francisco, has the Forbes Norris ALS center for resource.Good luck, glad there is improvment!