接患者家属求助Email,涉及血液、肿瘤、康复、中医等学科,敬请杏林高手会诊支招

(请直接回复: reneemoore@wowway.com),多谢！

Dear Mr. Fan,

I came across your study while searching for ‘hope’ for my brother.  He currently does not have a lot of upper body strength but is working very hard at it. I am wondering if there could be a misdiagnosis of my brother.  I am grasping at straws here because nobody can figure out how my brother could walk into a hospital & become paralyzed in a matter of weeks.  I’m asking you because my grandfather had ALS.  Can you please make any suggestions or refer this to someone who may be able to give me some information related to my brother’s condition????  He seems to have a lot of RARE things going on. 

BACKGROUND INFORMATION ON MY BROTHER BOB….

Long story short…he was diagnosed with AML (Leukemia) in 10/2004.  It reoccurred 10/ 2005 & he had a Bone Marrow Transplant 1/ 2006.  My oldest sister was a near exact match and the BMT went very well with little complications………………………………..

THEN 10/2006 Dr’s discovered his AML was in his CSF (Central Spinal Fluid) which is rare.  They never once gave him a spinal tap during his entire treatment to confirm it was not anywhere else so we have no way of knowing if he had it all along.

They treated the CSF and put Bob back into remission.  He was due for a 2^nd BMT 12/4/2006 but he ended up in the hospital with a sudden fever which developed into some type of severe pneumonia & we nearly lost him.  Within 72 hours he was put on a ventilator hoping it would be for 4-5 days until the antibiotics kicked in but nothing was working.  He ended up being on the ventilator for 13 days.  During that time we noticed he developed drop foot & begged drs to do some type of physical therapy while he was there.  They did nothing.  My family & I did everything we could by moving his feet & rotating them to keep the muscles from tightening more.  When he got out of ICU we noticed his legs were badly atrophied & got worse as the days went on.  We continued to push the PT but half the time they didn’t show for their appts with Bob.  Once again, we worked my brother’s legs as much as we could and began giving him A LOT of protein.  He was without food for nearly 3 weeks…another issue….we begged them to put a feeding tube in him for nutrition and they never did.  We kept telling drs he can’t move or feel his legs, feet, toes, etc.  It took them over 3 weeks to take us seriously and finally send a neurologist in and they did an MRI.  They noticed something in the lower back region  but didn’t know what it was.  After all this time, they have ruled out everything and are now assuming it must be a rare but not uncommon Transverse Myelitis.  My brother walked into the hospital 11/3/2006 and may never walk again.  We do not understand what happened etc….

My brother is NOT getting enough Physical Therapy where he is at (a Subacute Rehab).  Do you have any information that could help my brother in his recovery?  He has been on his back for nearly 2 months and we have no way of moving him off his back.  The paralysis moved upward approx. 2-3 weeks ago and he is now experiencing weakness of the upper body, specifically effecting the ‘grip’ and strength in his hands.  He MUST get stronger so he can hold himself up.  It is critical for him now because they cannot do the 2^nd BMT right now.  He is too weak and would never pull through.  If you do not know yourself but think someone your affiliated with knows about this Transverse Myelitis with extreme muscle atrophy occurring after treatment for cancer please forward this information to as many as you know.

We are desperate now & in a race for time.  His cancer could come back any day so we need to get his body good & strong to be able to deal with it or get the 2^nd BMT before it comes back.  The 2^nd BMT is the only guarantee we have of saving his life for long term.

Sincerely,

Renee Moore

Cell:  440-570-0624