Dear Family and Friends, Some of you may know that last winter I started experiencing arm and hand weakness issues, especially during cold winter days. For most of this time I had been thinking that it was carpal tunnel. After seeing my primary doctor in late March, we scheduled an appointment with a neurologist, but could not find an opening until July 17th. Starting in early May, my condition worsened and I was able to escalate my neurology appointment to June 4th.
I was able to see Dr Sara Mayer on June 4th, a neurologist at Park Nicollet. After examining me, she had strong suspicions that I was suffering from MS or ALS. Blood tests were done that day and sent to the Mayo Clinic to be analyzed for antibodies and receptor inhibitors. On Thursday June 6th, I had a brain MRI, followed on Monday June 10th with an EMG.
My family and I met with Dr Mayer again on June 19th to go over the test results. The diagnosis was bad. I don't have MS, but Dr Mayer said that after looking at all the data, the signs are indicating that I have ALS. The brain scan was normal, my spinal cord looks healthy and the wear and tear looks very good for someone my age, but the nerves leading outward from my spinal cord are degenerating.
In an effort to be sure of this diagnosis, Dr Mayer scheduled an appointment for me with another neurologist, Dr Gaurav Guliani at the Neuroscience Center in St Paul, to confirm or contradict Dr Mayer’s diagnosis. Dr Guliani was to examine me on July 3rd, however he was unexpectedly ill on that day and my appointment was rescheduled for July 17th.
Last Wednesday, July17th, my step-sister Janet and I were at the Neuroscience Center for nearly 6 hours. In addition to Dr Guliani’s examination, I was seen by much of the staff there – OT, PT, Speech Therapy, Respiratory, Palliative Care, Pulmonary, Nutritionist, etc. Dr Guliani’s diagnosis was in agreement with Dr Mayer and his written evaluation was “possible and probable ALS”. New blood tests are being done and a new EMG on Aug 1. The next appointment for further diagnosis is Aug 21, but the probability is high for ALS. There is no definitive test for ALS, it is derived by the lack of other pathologies.
I've known for a while now that ALS commonly shows itself by simply not being able to be explained by any other diseases and I have largely come to terms with this. I am thankful for the support of family and friends and the quality of care that is available to me. My goal now is to face this with dignity and enjoy the life I have left.
Since June 19th, and while I am still physically able, all my efforts have been on getting my financial, personal assets, and personal life together. My family is helping a great deal with this. My plan is to move out of my two-story home in Eden Prairie and into a single-story accommodation that will be closer to my family and the treatment center and to help facilitate the needs I am told to anticipate.
My current symptoms are muscle fatigue and weakness specifically in my limbs, fasciculations in my limbs and torso, and general fatigue not attributable to any event or physical activity. My form of ALS is called limb onset, but I will eventually experience all symptoms of ALS. I am currently taking a drug called Rilzole to slow the degenerative process. I am also a candidate for an infusion drug called Radicava.
The worsening or the addition of symptoms of ALS over time vary from person to person. The doctors cannot tell me how long I have had ALS or how long it will be before I am disabled enough to need nursing care.
I am sorry to bring such sad news. I have been very blessed to have a caring family and caring friends. Without all of you I wouldn’t be able to face this terrible disease with the strength and dignity I need.
Quick update for everyone. Tim has moved up to the Twin Cities from Rochester. There was a slight stay at one location but he has since moved to Burnsville which is very close to some family members. Please schedule a visit or write to Tim at:
Patients and caregivers love hearing from you; add a comment to show your support.
Help Tim Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Tim's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
