IslandChelle
New member
- Joined
- Dec 24, 2021
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 11/2021
- Country
- US
- State
- WA
- City
- Oak Harbor
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.
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.