Satisfied with your care?

[Dagmar]

I am very satisfied with the care I receive from my neurologist and her ALS Clinic team. They have been seeing me for 10 years – – for about 8 years I went every 3 months, then every 4, for the past year I am on an every 6 months schedule. That’s because my progression has plateaued with minimal change… and I don’t have questions for them.

I’ve found that we pALS need to be assertive in our health care and expectations. Don’t assume that when you first show up everyone will be focused on “recovery & rehabilitation.” They have been programmed by many patients prior to you who are passive, depressed and, want to give up – – so they tabulate and ease your decline.

Instead, let your team know you want their help in maintaining and improving your function. And, that you are willing to put in the work at home to do just that. Become educated on the cause of ALS and basic physiology & health.

ALS Clinic: The One Thing to Always Bring with You

If you are inclined or interested in joining clinical studies, do your own research (there are plenty of good resources: https://iamals.org/alssignal/) and bring the information in with you to discuss together.

Overall, I have had excellent care and discussions with my clinic team.

pRex – – your last sentence in your Topic question seems loaded and biased, so I won’t address it.

 

[Deleted User]

I’d like to hear the experience of others because, regarding the above and other time-sensitive issues, my clinical care has been dismal to the point of abandonment. Post-peak COVID “regrouping” and form-letter assurances have not been borne out. As a fastidiously informed, researched, trial-aware, physio-disciplined, “assertive” patient, I’m aghast at lack of response, let alone “discussion.” Simply asked, what accessibility do others have to discuss such topics with their providers? I sincerely hope mine is the exception.

 

[Dagmar]

It sounds like your clinic is unfortunately not meeting your needs.

What suggestions do our members have for pRex? Has anyone had similar experiences?

[Amanda]

I wonder if there is a difference if a pALS is seeing a doctor that is not involved in clinical research. Since my family has had so many cases of ALS, we have been part of several studies, one being long term.  Because I have the mutated SOD1 gene and a abnormalities on all my testing (but no diagnoses) I go to the clinic every 6 months for testing.  This is part of a research study and the Doctor always discusses what trials and treatments are out there. I also go in well prepared often times with articles in hand and a list of questions.

[marianne-opilla]

I am followed by a ALS team at a large University Hospital.  My neurologist calls me about research opportunities, video evaluation, even during COVID.  I feel I am informed and up to date. I am also a “pest” and read everything, so take questions and potential opportunities to my team.  Dr. is very approachable and realistic.

[citaliano]

I was with a team from early symptoms through diagnosis and the about 15 more months. In general they took the passive approach and only addressed things I brought up. Not patient pro-active is an understatement. I switched clinics and am pretty satisfied with my care. Still I need to be pro active but the team is better at responding, investigating my inquiries and getting back to me. In ALS as in any disease or conditions it is incumbent on the patient to advocate for oneself. The squeaky wheel gets the grease.

[Dagmar]

Good for you Cindy! …in being aware of what was lacking at the first clinic and switching to a better group.

You and Marianne are so right – – we need to be self-advocates for our healthcare, and not a passive patient assuming our needs will met.

 

 

[jerry-manning]

We’ve had little collaboration with our very well known ALS clinic. As a former nurse, I’ve found navigating the system so disheartening. We’ve asked questions, we’ve researched trials and supplements, we’ve asked about them, we’ve even asked for an appt outside of a clinic. Absolutely frustrating.

[citaliano]

Jerry I can only hope you will explore more options. I actually came upon my new neurologist/clinic through an inquiry by my sister whose daughter was seeing a neurologist for a different issue. They live in a neighboring state. That neurologist merely suggested that I should make an appointment with my current doctor. I did that and within a week I switched my care. No looking back.

[maw]

I was diagnosed in Dec 2019 and my experience with my Dr and ALS Clinic has been dismal at best. I don’t hear from them unless I call them.  I have never been contacted to see how I am doing, so far during Covid no one has checked in on me. I am seen at one of the biggest Research hospitals in the United States in the mid Atlantic region and I have not once been contacted about clinical trials in spite of the fact that I have inquired several times. Any clinical trials I have applied to I have found and applied to in my own, although I have yet to get into one.  Every time I ask about a new treatment they blow it off and just say it hasn’t been proven yet. When I ask about seeking treatment in another country because there isn’t much here they say don’t waist your money and go live your best life. If I had options to be seen somewhere else I would. They only seem to be interested in their own research and in those patients enrolled in their trials. Horrible way to treat patients and run a clinic. I feel they are to caught up in research and have forgotten that we are patients.

[maw]

If anyone can tell me of a Doctor/clinic in the Maryland area that they love I would appreciate the information. As, like I stated above , I’m not really being treated, just seen/observed, at the one I am currently  at.