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How do you want your doctors to talk to you?
Does your medical team/doctor talk in terms of ALS stages?
7 stages of ALS?
- Symptom onset.
- Diagnosis.
- Independence.
- Assisted independence.
- Moderate loss of function.
- Advanced loss of function.
- Death.
How do you discuss your case with your medical professionals? Do you refer to specific tests or the ALFSR score?
What information do you want at each appointment?
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9 Replies
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My ALS clinic team and neurologist know that I have read “almost everything” about ALS – – so when I come in, I expect them to help me maintain the level where I am. I expect improvements in the areas that I can control. After 14 yrs. there’s not much new they can tell me.
BTW – I don’t consider death as a stage of ALS. It’s a stage of life.
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Mute is fine. Just kidding. I wish that they would share their thoughts on what may happen next. I would also like to be included in the interdisciplinary meeting.
In reference to the ALSFRS, it is subjective as is neuroscience.
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The worst thing 3 different health care providers have said to me is “Don’t use Google.” This is a red flag for me that I might be dealing with someone who should not be working with pALS. Alternatively, the helpful health care provider can point to trusted sites like NIH, John Hopkins, Mayo,…which can be found via Google Search.
Also, for me, more is more! I do not need a doctor hiding stuff because I might get scared or I might “get confused”. I appreciate honesty and as much technical information as I can get.
In a perfect world…refer the person with an yet-to-be-diagnosed neurological condition to the best hospital available.
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I wish they would read my chart. For hours during clinic I am asked to answer the same questions. Ask me once how I am and what my questions are then record and read my answers. My PFT scores differ widely, mostly because by the time I’m tested I’m so worn out from all the talking. I’ve brought numerous friends and family to clinic; they’ve all observed this. As such there has never been accurate testing of my lungs
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The best care I got was with a study I did in Florida at Gainesville University Hospital. I’m in Chicagoland but like others the Dr I see asks the same questions every time. I do like the ALS team members that assist in equipment etc. I wish the Dr would at least remember me!
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I’ve never had a physician talk to me in the terms of stages or what to expect. For years (2010-2022) I participated in pre-familial ALS research. That usually included one to two days of testing. An EMG, neuro exam, MRI, blood work, urine, Q-motor test, and cognitive testing. Each visit usually included other types of nerve conduction tests along with other tests. At the end of those appointments Dr. Benatar would take some time and tell me what the test revealed and how the results compared with previous years. We also looked at the trends. He was always very direct about the test and what was happening. After I was diagnosed, I continued to participate in research studies at the University of Miami. I honestly don’t know how many studies or what each one is specifically looking at. If they offer or invite me to participate I sign the consent. I know they are following the symptoms, they collect blood, urine, and spinal fluid every month. They continue to do all the same ALS tests. This last time I saw one of the doctor’s I had not been examined by. Doctor Granit, and he was amazing! As he did the EMG, he showed me the screen, and explained what each thing (visual and sounds) meant. He also explained how the physical neuro exam was scored.
I realize my experiences may be very different than other pALS. Partially because the team at the ALS Clinic and research facility are amazing. Dr. Benatar has made a point of recruiting doctors and other staff members that are like minded, and compassionate. The other part, which greatly impacts my experience, is that I have known a couple of these doctors for over a decade through the research.
I wish everyone felt as confident in their medical staff as I do. It makes a difference to me.
Amanda
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I think (I hope) that nowadays more patients feel empowered enough to recognize when a doctor is not a good fit for them… and seek another opinion. In the past, we used to “grin and bear it” – – but now there is so much information that’s available about ALS – – we should expect our doctors to know what ALS is and how best to treat it. Their personality or bedside manner should also be compatible with ours.
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I would like my Dr to have more curiosity regarding my medical history etc. Given the fact that virtually everyone is affected differently by the disease I do not understand why Drs seem to have a very singular view of the disease. A cancer specialist would not view skin cancer and pancreatic cancer in the same way. Putting trials together without creating groupings of patients based on similar symptoms can only challenge the validity of the science. It is not enough to look at familial and sporadic separately … I understand a lot of research is being done to identify more bio markers. A side by side approach might be having more Drs interested in their patients.
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I agree with you Amanda UA Miami is outstanding. I have been in a study of Dr Benatar for the last 4 years. Although now at clinic I don’t see him.I was seen by Dr Granit for a long time. He was always so kind.
I now have Dr Brown and his team. I can text him anytime and get a reply fast. I have to say honesty is what I want no sugar coating and that’s what I always get.
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