ALS Clinic - disappointed

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IslandChelle

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We had our first appointment at an ALS Clinic in Seattle yesterday and quite frankly, I was really disappointed. We came out of there with more questions than answers. The doctor was very nice but between her very soft voice, a mask and a full plastic face visor, we had a difficult time understanding her. My husband could barely hear her and had to keep asking her to repeat which tired him out quickly. They had no medical records from any of the places my husband has been to. I called this clinic nearly every day for the past two weeks to make sure they had these records but could never get through the phone lines. I waited on hold for over an hour each time I called. I explained this to the nurse - I guess Covid is the answer. She said they normally have 30-40 phone operators and right now, they have only 5-10. Yikes. I’m glad I printed out and brought in what I could so they had at least the test results from the past year.

The doctor kind of took his history, really concentrating on his Cerebral Palsy - she couldn’t understand why it wasn’t diagnosed until he was a toddler. She kept pressing me for details about it which I found strange. I’m not his mother! I couldn’t tell her. Even my husband didn’t know. Then she talked about this and that but wasn’t really clear about what we were to do. She wanted my husband to have more MRIs - of his brain and also his spine. Which my husband is totally against. The one MRI he had upset him so much that you even say MRI and he freaks out.

She just kept saying she could ‘get him into our clinic’. But never really explained what that meant! I thought that was what we were there for yesterday! To attend the clinic. I kept asking her to explain what all it entails and what they would do but she just brushed off my questions. Then she said the next clinic is in February. I told her I didn’t think my husband could wait until February. His diagnosing neurologist has already suggested a feeding tube and a Trilogy. She looked startled at that and turned to my husband and asked him “Do you think you’ve lost weight?” Um. Yes! He now weighs 140 pounds down from 185! She didn’t seem to know what to do. She left for a few moments and came back saying she wasn’t sure but she might be able to get us into that day’s clinic but it wouldn’t be until much later. It was already 1pm and we had left home at 7am to get there. My husband said he was exhausted and had had enough. We decided to leave but it was with a bad feeling and absolutely no info. Usually doctors give you print outs of what you discussed and treatment plans, etc. We didn‘t receive any of that. No link to a patient portal. No contact info or what to do next. Very confusing and upsetting.

So, what’s my next step? We do have a referral for a different ALS clinic in Seattle. I’m going to call them and see when I can get my husband in. And also contact his neurologist and get started on the feeding tube and Trilogy. They had kept putting us off because we were going to the ALS clinic. That seems to be what everyone wants you to do. But so far, I’m not impressed.

Do all of you use these clinics? Did we just have a bad day at one? And normally they’re really good? Or am I just expecting too much? This is such a hard battle to fight and I’d just like to have a bit of help from professionals along the way but I feel like no one is really wanting to do much.
 

Nikki J

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I am sorry. It sounds like you were booked as a second opinion consult and that is a different thing there than clinic and for whatever logistical reasons you couldn’t just see the various people that one sees in clinic. Your husband for reasons you already explained was diagnosed very late and arrived with more needs than the average second opinion. That is no excuse for her not pivoting and assessing his urgent needs.

Laurie knows the area you are in and can advise what to do next.

generally a clinic should be helpful for getting the things you need like feeding tube, respiratory support and power chair etc. whether this clinic can redeem themselves and whether you can ever trust them I don’t know
 

GreenCat

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I have had a similar experience with clinics. We drive 3 hours to get to them. We wait in small rooms and the respiration, nutrition and technology people either come in or we are shuffled up and down halls to see them. People lean in from time to time to say, "Are you waiting for the nutritionist?" and we say, "We don't know exactly." It's tiring. There's always a sum-up at the end when the doctor comes in. Very jolly and a tie with leering green Grinch faces, he said, "Well! What are your plans for the new year?" and we said, "We'd like to manage to get to the Black Sea, before...you know..." and he said, "Liz, you don't know how sick you are." And that's true. Pretty sick, I'd say. But, really, I don't know what clinics are for.

Plus, we were reeeally disappointed and confused when, on the brink of being accepted into an experimental trail, the doctors read my medication list that they've had since last spring, and determined I needed to stop taking TUDCA and have a wash-out period. By the time that wash-out period was over, my respiration was 50% - too low to participate in the trial. Sigh.
 

lgelb

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I too am sorry you had that disappointment. We used the VM clinic strictly for logistical reasons and stopped going nearly 2y before Larry died (after we had all the equipment). Other than equipment orders that I basically walked them through, they just didn't add value for us. VM does have a standard Cerner portal but I never saw the ALS clinic use it.

But we did not have the same doc that you saw. Dr. Elliott was the director at that time. He is now at Swedish. He isn't all that but we got what orders we needed from OT/PT.

My guess is that you would find more understanding of this dual diagnosis at UW. Is that where your referral is for? They probably have a long wait, so I would emphasize the extent of weight loss and respiratory deficit to the scheduler.

One possible advantage of getting the feeding tube at VM is that they were ready to do it in radiology, as is generally best practice in ALS, especially when breathing is affected, whereas UW seemed determined to go the gastro/surgery route; however, this policy may have changed. As it turns out, Larry did not get a tube but your husband is obviously in a different situation. Still, at this point, the tube you can get is probably the best. It also may be worth checking the wait at Swedish if UW isn't practical.

Certainly, weight loss is one of the first things they should have asked about, and, as Nikki said, pivoted to that, and yes, clinics are supposed to assess and support the most urgent needs, even if your visit was positioned as a second opinion. But the reality is, some are better at that than others, even before Covid-related staffing shortfalls, which are nationwide, come into play.

If needed, your neuro can certainly write for a Trilogy with pulmonary testing results as documentation, and refer to any institution's interventional radiology department for a feeding tube. Not everyone has access to an ALS clinic, so not all orders are written by them. Let me know how I can help.
 

rmt

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We have seen Dr. Weiss at UW and he was excellent. My husband gets most of his care from the VA, so we don't go to the UW clinic, but I would think that would be the place to go for a complicated situation like you have. I would call them directly (there is a phone number online) and see if they can help move things along (especially for the feeding tube).
 

IslandChelle

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Thank you for all of your replies and support. Looking at it now, I agree - I think the doctor did think it was a second opinion consult. Which we hadn’t asked for and had never been consulted about. I think Steve is so far progressed that there’s really no doubt in our minds. Actually, we weren’t given much info about these clinics. Just that we had to go to one. What info I did learn was from reading this forum!

I did contact the UW clinic, calling the number they left on my voicemail. But for some reason, I must be calling the wrong number, though I checked it twice. The operator I spoke with had no idea what an ALS Clinic was and when looking up my husband’s referral on their system, she said I needed to be calling a clinic at the Harborview center. Which I don’t understand because the info on the UW’s website says the clinic is held at Montlake by the school. When I explained my confusion, the operator got mad at me and hung up. I can’t make this stuff up! I think everyone is so overworked right now because of Covid, everyone has a very short fuse. And I’ll admit it - including me!

But his neurologist responded to my email within an hour. He’s getting Steve set up for a feeding tube (which will be done in radiology) and the Trilogy along with a consult with the pulmonary dept about whatever else he might need. He agreed with me that we can’t wait much longer and let’s not depend on the clinics right now.

I am so grateful for these forums! At times, it can be quite overwhelming to read them and seeing what our future will be. But on the other hand, it’s good to know what to expect and that there is advice from people going through it too! Again, thank you.
 

Nikki J

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That sounds mostly good news. He is getting the feeding tube and breathing support which is what he needs urgently.

I am sorry for theexperience with the operator. If you were calling the appointment number on the UW neurology webpage I can only guess you got some covid temp who was not fully prepared. But maybe the person who called was giving an inside number and transposed digits? Anyway I hope you give UW a try Until Robin said the name I had forgotten Dr Weiss but I know someone who sees him and likes him

good luck
 

affected

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I'm so sorry you had this awful set of experiences! As if ALS isn't enough.
I am however really glad you found the resources here and were supported through this and have the urgent needs being sorted.
Sorry we are welcoming you here, you will find amazing support and solid information here.
 

John Prestridge

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My wife who just recently lost her life to ALS thought the clinics for the most part were worthless.

Her doctor's favorite reply was "I don't know".
 

Carlam

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I hear the same thing. I was diagnosed in Sept 2021. I’m getting ready to go back to do clinic,. I just don’t understand the purpose. It’s to get benchmarks of how I’m doing. I don’t want to hear how I’m getting worse. There is nothing they can do for me. Sure, help me get care, but that’s it. Dr. said ”You’re going to do fine”. WTH?
 

IslandChelle

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Thank you again for your replies. I also get tired of the “He’s doing great!” from all the caregivers. Um. I don’t feel like he’s doing great. He was able to shower and dress himself as short of time ago as late October. Now he can barely lift his arms high enough for me to put deodorant on. He can still stand but walking is no longer a possibility, even the short shuffle he was doing just a week before Christmas.

But we do have an appointment next week, with the pulmonologist to get the Trilogy. The receptionist has said she’s keeping one back for us because there are so many Covid patients using them that she’s scared there won’t be one left for him. She got us the earliest appointment she could. I did call UW and am waiting for a call back about an appointment with the clinic. The receptionist said it could be March before there is an opening but the doctor will review his records and let me know if it can be earlier. I’m not sure if it’s worth it but I hate to not go and then find out it could have been some help.
 

Mary2

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The receptionist at the pulmonologist's office sounds as if she is on top of things. Good of her to make sure there is a Trilogy for you. I think the clinic might be helpful if they have a dietician you can speak with, but I am not sure I would wait until March to speak with a dietician or a professional about PALS diet. Hopefully the weight loss will slow down once the Trilogy is in use. My PALS gained weight once he had the Trilogy.
 

lgelb

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There are many high-but not empty-calorie foods you can blend into smoothies, soft dishes, and puddings that are easier to eat, like eggs, nut butters, veg broth, ice cream, cornstarch, juices, canned fruit, tender meat, mashed potatoes, oat milk, etc.
 

ReginaS

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Hi all, reading this thread and trying to remember what our clinic was good for: Tom had a great neurologist. Just a fine human being. Tom liked talking with him. Mainly, they helped us stay on track, answer practical questions about swelling of legs, order the wheel chair, and get the medical equipment. They encouraged Tom to use an AFO foot brace, a cane, then walker, then wheelchair, bipap, speech assistive devices, suction machine and cough assist. We got to know some wonderful therapists. It would have been much harder to find/visit these therapists in different clinics and it helped that they knew about ALS. Many people don't and you can get bad advice, also from nurses and therapists. One strange thing was that they always talked about 3-5 years for Tom. And Tom knew by the speed of decline that that would not be the case - he lived 16 mo. after diagnosis. We never knew if they wanted to be encouraging but it seemed unrealistic and weird. He would have appreciated a more realistic assessment and conversations that felt more real.

Once the clinic visits turned out to be too strenuous and kind of useless - only a documentation of his physical decline - he switched over to palliative care and then pretty quickly to hospice as well. The advantage of hospice was that we knew we had medication in the fridge in case of a breathing/swallowing emergency. Tom had questions about dying and the physicians/therapists in the ALS clinic were more trained to fix people or help them get better - even though it was an ALS clinic. They shied-away from questions about death and dying. Some clinics have palliative care as part of their clinic but ours did not. Once he went to palliative care he got better answers for his questions and was relieved - i.e. what happens to the body when the end is near. What kind of meds are available and how to administer....

Tom did not do any clinical trials, even though the clinic encouraged him to do so. His progression was so fast that he did not want to lose quality of life by scheduling more clinic visits. I guess when patients are on clinical trials there might be more reason to continue going to the clinic.
 

Gail Brewer

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My impression is that clinic staff are in denial and selling false hope!
 
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