Grace Brame, Ph.D.
Email address - gracebrame@yahoo.com
Thank you for what you are trying to do! My AA friend is now FALLING, over and over, and is really in danger. We do not know if this is part of AA or whether it is from her meds. She can't sleep well at night but is sleepy all day long. She has lost 40 pounds and now has gained 10 pounds back. We are bewildered. She is taking methadone and duladin. (What is the spelling for that last word?) The pain has been reduced from a constant 9 to 8 or 8 1/2, but the falling has appeared. She has knocked out two teeth, and had bleeding bruises. We need better doctors. We have almost given up on Wilmington, Delaware and Philadelphia, Pennsylvania. She is going to the head of the Pain Clinic at the University of Pennsylvania Hospital. Not much hope there. No one is doing any experimental research.
What do you know about Johns Hopkins? Is there someone there? It is an hour and a half away and a great hospital. We have investigated Cleveland Clinic, but they insist on taking patients off all medicine at the beginning. Duke has been very unhelpful. Dr. Aldrete has been lauded and vilified. (Why is he disbarred in two states? Don't they understand him or did he really do something harmful to some people?
I have called Dr. Forrest 2 times. The call is not returned. I have not been able to get to Dr. Burton.
Whatever doctors, medication, or advice you can give us will be so much appreciated. My friend would like to go somewhere where they take people for several weeks and concentrate their abilities on her care.
What do you think>
Much gratitude,
Grace Brame
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I had the same thing......I would just fall like nothing flat. One time I lost 5 teeth and other times I hurt myself pretty bad. It is called Progressive Spastic Paraperisis and I have been given tizanidine which has been shown to help. Baclofen has had very good results too. I no longer have these episodes. They stopped just about as soon as I started the drug. I hope this helps you. I know I can't diagnose your friend, but maybe this is something to try. One more suggestion......for anyone dealing with this. I have had adhesive arach for 4 years and 4 years ago I got a spiral notebook aqnd started learnoing all the doctor speak I could. This has enabled me to read many medical papers on arach that I never could have understood before. In fact I was the one that diagnosed why I was falling and suggested the cure. Empower yourself! God Bless and good luck!
ReplyDeleteTodd
Grace, I went to Aldrete in 2008 for a full Independent Medical Exam, diagnosis and his 80+ page report personalized on my condition and circumstances. The report has been extremely valuable when showing it to new doctors. I do not want to get into what I know about his "problems" online, but if you would like, I will email you and tell you the whole story as I know it.
ReplyDeleteAlso, it sounds as though the Arachnoiditis Boot Camp could be exactly what your friend needs.