October 7, 2020 at 7:42 pm #16503AmandaKeymaster
I’ve been alarmed at learning that many doctors aren’t empathic when telling someone they have ALS. To be honest, some of the stories I’ve heard just blow my mind. What was your experience like? Do you see a difference between someone who is a specialist in ALS and a doctor who is not? What advice should we give to doctors making this diagnoses (if we could)?
October 8, 2020 at 2:12 pm #16507Roxanne KusskeParticipant
Our Neurologist and also the ALS specialist doctor’s were very empathetic when discussing my husband’s ALS diagnosis.
October 8, 2020 at 2:34 pm #16508CateParticipant
My doctors were very empathetic and as kind as could be–but they are ALS specialists. Then again, it took almost two years from the time I first had symptoms to get diagnosed, so I was well-prepared for the final verdict. They had a rep from ALSA there to talk to us after the exam to let me know what services were available, and the admin for the ALS clinic gave me her direct line and email and sincerely told me to call her anytime whenever I needed anything. (She always responds to me ASAP–often within minutes.) I think it’s really important for doc to be kind and to be prepared with info–especially about support–to give to the patient or family, especially if the patient is not expecting the diagnosis. It’s a lot to take in.
October 10, 2020 at 8:46 am #16511AmandaKeymaster
@Cate, I agree with you. I think it is essential for a doctor to be kind and be prepared to provide information especially when caring for a pALS. ALS is rare (although it doesn’t seem that way in our community) and having someone knowledgeable to talk to at the beginning would make all the difference in the world.
October 10, 2020 at 9:12 am #16513CatherineParticipant
The neurologist my husband saw where we live was AWFUL! He painted a doomsday scenario and basically told my husband that the current meds don’t do much and to prepare to get a wheelchair, feeding tube and decide if he wanted to go on a ventilator.
We immediately got an appointment at The Barrow Institute in Phoenix and flew down there. The doctor there, Jeremy Shefner, was WONDERFUL. He, unfortunately, confirmed the diagnosis, but told us it was moving slowly and said to my husband, “If you don’t walk in here on your own two feet a year from now, it’s because you got hit by a truck.” You can imagine what that did for our spirits.
October 13, 2020 at 3:26 pm #16535Victor B. NakkacheParticipant
I was a recently retired neurosurgeon in very good health and despite not been a neurologist I already new too much about ALS(maybe not so good),so my first guess when I got the initial symptoms was ALS which was confirmed about 2 months later by two very known neurologists.
I even saw two more besides going fo r cervical spine surgery (yes ironically),which did not help but I was willing to take a chance and the risks.
To summarize in general I feel that most specialized neurologists have little heart and care about the future treatment,not the present.That’s why they get so involved in research,NOT Treatment,I wish they would be more proactive (like most neurosurgeons)
October 13, 2020 at 3:50 pm #16539Dave DahlParticipant
Is it ok to ask the doctors to be honest and true with us? How do you get the doctors to tell you what they are seeing? Our clinic just took measurements and said see you in three months.
Is it ok to ask people what they are doing to be as well as they can be for as long as they can be?
That is what is frustrating to me, that no one seems to have any answers.
October 13, 2020 at 8:09 pm #16545
Thank you for sharing your thoughts Victor. As a retired neurosurgeon who is now living with ALS, I appreciate your candor.
Yes, it is easy for many neurologists to take the easy (less emotional) route and focus on research. The few neurologists out there who show empathy and take interest in their patients are true gems. Hope we can encourage more like this to enter this field.
October 13, 2020 at 8:16 pm #16546
Dave, I think that the fact that you are asking “if” is OK to confront your doctor – – shows how intimidated patients are when in the presence of their physician.
I was fortunate to have worked alongside physicians for 20+ years, and learned that although some do have ego issues, the majority are open to honest discussions with their patients. They take their cue from the patient – – if you don’t ask, they think you don’t want to know.
Perhaps this article will help 🙂
October 13, 2020 at 8:55 pm #16550Dave DahlParticipant
I wish we would have had that article before our first clinic. We have compiled a number of questions for the next one.
I am hoping to channel the positive attitude and energy I read here into every day.
November 12, 2020 at 1:27 pm #16781Kathy stitzParticipant
When I was diagnosed, the ALS doctor was very nice and told me he knew it was a lot to take in and that it was very overwhelming. He told me to just try to stay positive. This is easier said than done, though! He also said, ” You really don’t have a choice” (about dealing with it). Then he said, “Well, you do have a choice”, I guess implying that people can just commit suicide if they don’t want to deal with the diagnosis. That’s not something that I support , though.
November 12, 2020 at 2:25 pm #16783Wayne ZatarainParticipant
I have a clinic next week and to be honest I really don’t want to go. Lots of effort for no results. I get the same treatment when I bring a car in for service. Check all the boxes and send me home. Last clinic they got online in the middle of the session and gave me a score of 41(?), don’t know what that meant and not really explained. Just seem to be a test subject for statistical analysis. My first indication of any problem was December of 2016 finally declared October 2019. Limited strength in the legs makes mobility some restricted. Told I have slow progression, but no idea what that means for the future since i don’t even get the check sheet at the end of the clinic.
November 12, 2020 at 3:59 pm #16788Suzanne AkermanParticipant
My Mayo Clinic neurologist was wonderful when she told me my diagnosis: “I am so sorry to tell you this. I think you know what I am going to say.” All of the doctors were wonderful, when I was diagnosed. The clinic is 300 miles away from our house.
I saw a wonderful ALS neurologist, located 60 miles from my house, a month ago. After my misdiagnosis by a neurosurgeon in the area, I was skeptical. She was wonderful, I must say again.
Got a direct phone number for her RN assistant. I can call her any time and ask anything. Going to their ALS clinic next month. The neurologist explained how their ALS clinic works. Good to have them in my corner.
I was an RN, and know how to get doctors to listen, if I know what I want to say. Nothing is off limits.
November 12, 2020 at 6:29 pm #16790Christine MorettiParticipant
As with just about all ALS patients, my journey to diagnosis was a long one. It was the day before Thanksgiving 2015 when I finally met with the doctor who would change my life forever with the words “You have PLS”. His name is Dr. Goran Rakocevic, an ALS expert who also worked at NIH for ten years. He was a straight shooter, but at the same time the most empathetic and caring doctor I’ve ever known in my life. Dr. Rakocevic has since moved out of the area but he will always hold a special place in my heart for his warmth and compassion. His new clinic is very lucky to have him. I wish all patients to have the same kind experience.
November 15, 2020 at 3:49 pm #16806
Wayne, the score you received was probably on the ALSFRS-R, which is a series of 12 questions they ask at every visit to determine your current function. I used to “rail” about the 12 questions, wondering how medications, prescriptions and, clinical trials can be determined by these 12 questions – – but they are.
I now use the questions as my personal benchmark. Part of my home exercise routine incorporates these skills: rolling over in bed, breathing deep, speaking, using fork and knife and, handwriting.
For a humorous spin, I wrote this: https://alsnewstoday.com/columns/2017/08/29/i-am-still-functioning/
For an online ALSFRS-S scale: https://www.encals.eu/wp-content/uploads/2016/09/ALS-Functional-Rating-Scale-Revised-fill-in-form.pdf
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