jb63
Distinguished member
- Joined
- Dec 13, 2011
- Messages
- 164
- Diagnosis
- 12/2011
- Country
- US
- State
- NY
- City
- Long Island
I saw my primary neuromuscular doctor today for an eval and a really long discussion of where I am at. Basically she said I can't be called PMA until 2+ years of LMN symptoms from when they first started. I will be 2 yrs in Sept. I do have a mild hyperreflexia that I've had from my first eval April 10, but it is not certain if this is UMN or the fact I have cervical and thoracic cord pressure. It has not increased. This clouds the picture.
I agreed to be followed by the ALS clinic at the University Hospital at Stonybrook NY and to start Rilutek. I know we will need help at home, equipment, PT. This is the best move for me.
My next step is a nerve biopsy to check for inflamation as I as showing signs of lupus: joint swelling, butterfly rash, raynauds, and hypercoagulation. If inflamation is there I will be treated aggressively. She will work with my onc/hematologist to set this up. I get the results of my hypercoag workup on the 16th. She wants to know them.
My weakness has progressed in my legs, but she does say some is from just being inactive, in the left leg. She said my shoulders are slighly weak, but I just tore my rotocuff a few days ago. I sometimes get nervous or distracted during the exam and do not use all my strength, esp when hubbie is talking to me.
I found out why she isn't going to use IVIG on me now because my coagulation problems would become life threateneing, stroke or heart attack. We will have to see what, if anything shows in the blood.
She told me to enjoy my life and not focus on my disease, as it is basically unpredictable. Iive in the day, something I learned from my 2 cancer diagnoses. My atrophy and weakness increase she does not consider a rapid progression, thank the Lord. My weakness has been the same for the last 2 months.
She has been encouraging. She has many long term surviving patients. I have decided to put off the doc at columbia for the moment. Will see how the biopsy goes. I am sad, relieved, still hopeful for something treatable, but realistic. Sorry for the rant, I am trying to keep myself sane.
I agreed to be followed by the ALS clinic at the University Hospital at Stonybrook NY and to start Rilutek. I know we will need help at home, equipment, PT. This is the best move for me.
My next step is a nerve biopsy to check for inflamation as I as showing signs of lupus: joint swelling, butterfly rash, raynauds, and hypercoagulation. If inflamation is there I will be treated aggressively. She will work with my onc/hematologist to set this up. I get the results of my hypercoag workup on the 16th. She wants to know them.
My weakness has progressed in my legs, but she does say some is from just being inactive, in the left leg. She said my shoulders are slighly weak, but I just tore my rotocuff a few days ago. I sometimes get nervous or distracted during the exam and do not use all my strength, esp when hubbie is talking to me.
I found out why she isn't going to use IVIG on me now because my coagulation problems would become life threateneing, stroke or heart attack. We will have to see what, if anything shows in the blood.
She told me to enjoy my life and not focus on my disease, as it is basically unpredictable. Iive in the day, something I learned from my 2 cancer diagnoses. My atrophy and weakness increase she does not consider a rapid progression, thank the Lord. My weakness has been the same for the last 2 months.
She has been encouraging. She has many long term surviving patients. I have decided to put off the doc at columbia for the moment. Will see how the biopsy goes. I am sad, relieved, still hopeful for something treatable, but realistic. Sorry for the rant, I am trying to keep myself sane.
