I wanted to let everyone know that my Mom is starting to improve. Her breathing got stronger after just one plasma exchange. She has now had three treatments(she is getting 7 total every other day)and she can already move her left hand up to touch her face and wiggle her toes a little. We are extremely happy and encouraged. We are now making plans to put her into Brooks rehabilitation hospital once she gets released from Mayo. The doctors at Mayo say that there is no medical reason why she should not make a full recovery. Again, and again, thanks to everyone for their help and support.
My Mom got her first Plasma Exchange yesterday. They said if it is going to help, she should feel some improvement(even very small) within the next 10 days)She is still undiagnosed so they are treating the symptoms. They have run a lot of tests this week to rule out cancer(colonoscopy, mamagram, lund biopsy and pet scan) everything but the lung biopsy has come back normal. The results for the biopsy are still outstanding. I was interested to read the doctors comments as I know some of the tests he/she mentions have not been done. I will bring these up to the doctor today. As fyi I am spending most of my time at the hospital with my mom and do not have access to the internet. I will post updates as I can. Again, thanks so much to everyone who posted to this questions. Your help is greatly appreciated.
Thanks for keeping us informed. I keep checking back to see how things are going. You should know that plasma exchange doesn't work as well in some people as intravenous immunoglobulin (IVIg), and works better than IVIg in others. See how this goes and suggest the other if needed. Also, visit www.lizajane.org for lists of possible tests to run--check the lists for motor symptoms.
So glad to hear your Mom is safe at the hospital being cared for. Yes, I thought what the MD on here said was interesting too. And it sounds like your mother's doctors are following the same line of thinking.
I hope you will continue to let us know how things are progressing and how you are feeling. A mother is "precious cargo " to her children.
I cannot give you a formal clinical opinion as this forum is purely educational
Your mother obviously has a serious and progressive condition involving the peripheral nerves (as noted by the loss of reflexes)
B12 deficiency occurs very slowly over time, so it would be unusual to evolve so fast. It can cause pretty severe disability if untreated but the presentation with multifocal motor weakness is atypical. With B12 treatment some of the deficits may be reversible, depending on the severity and duration of nerve damage
Other things that come to mind are CIDP (chronic inflammatory demyelinating polyneuropathy, the chronic form of GBS) which causes predominantly motor weakness, is diagnosed by EMG/NCS, spinal fluid analysis and/or nerve biopsy.
Also, mononeuritis multiplex can rapidly affect one then multple nerves and has a variety of causes including vasculitis, diabetes, Lyme among others. Tests include various blood tests and/or a muscle or nerve biopsy.
Treatment is available for both conditions and consists of various forms of immunosuppression (ie steroids, cytoxan) as the dmaage is thought to be caused by the bodys own immune system.
One might also consider a paraneoplastic syndrome (as she is older and a smoker there may be an underlying cancer) or polymyositis (absent reflexes go against this but could occur in profound muscle weakness) or a rapid onset ALS type disease (caused by ALS itself or sometimes viruses like West Nile).
Ask your doctors whether these diagnosis have been considered.
Good luck
How are things going for your mom? Has she improved with the treatments she has been receiving? I'm so glad she is where she needs to be. Good luck to you and your family. I think many of us were quite worried for you! I'm still very interested in seeing what the Cleveland Clinic Neurologist has to say about all of this. Let us know about your mom's progress, ok????