Day 1 of 2 first clinic visit

Status
Not open for further replies.

Iscah1

Member
Forum Supporter
Joined
Nov 6, 2022
Messages
14
Reason
CALS
Diagnosis
11/2022
Country
US
State
TX
City
Sugar Land
We went to clinic for the first time today. Lots of tests but nothing different from was done before. My husband was a little frustrated about that. We thought there would be a bunch of different tests like a muscle biopsy or something like that. He also wanted to know how long he has. Dr said he doesn’t make predictions like that (not his exact words but something like it). Personally was thankful because I don’t want to lose hope as we get close to a death date set by the doctor.

There were a lot of figures and terms tossed around when the doctors were in the room. I caught that his als fsr (?) was 33. Is that really bad to start? My husband was dx in Nov 2022 after having various issues for 2 years, and he now seems to be losing function quickly. I couldn’t catch the breathing measures but overall his breathing was a concern but he didn’t qualify for a bipap yet. Based on what I read on Dr Google breathing problems are the “beginning of the end” but the doctor said that wasn’t necessarily true. The Dr was very positive and told my husband that he appeared down, so I’m not sure if the Dr made the statement about breathing to keep our spirits up. Tomorrow we speak with the team again to answer our questions so hopefully we get more info then, but I’m just so overwhelmed with it all. On a positive note, the staff was very friendly, which made the day go by quicker.
 
Iscah1: Glad the visit went okay and that the staff was very friendly. My PALS was limb onset and has been on 24 hour a day bi-pap for two years as of this coming late April. My husband had been on an anti-depressant for two years. He just weaned off because of a med conflict. I take an anti-depressant as well. They are helpful.
 
My husband was diagnosed August 2022 after speech and choking symptoms starting in March 2022. He has bulbar onset ALS. We learned that all ALS people progress differently. There are general stages of ALS , but how long PALS is in each stage is unique to that person.
Try to live in the present and enjoy each other.
 
Great you are half way through!
Would you mind putting 11/2022 in the diagnosis date in your profile, then it's easy for us to see at time goes by.

OK I'll address a couple of things for you.
Muscle biopsy is not usually done unless still doing exclusion testing. So unless this is for a second opinion and they are thinking it may still not be ALS, I would not expect the clinic to do this.

ALS is totally unpredictable, so not only can the doctor not predict how long he has, but we won't try either. Even someone who is rapid progression can suddenly plateau for no apparent reason. They could stay there for weeks, months even longer. Or just slowly decline.
Someone slow progression can have sudden periods of fast progression.

The ALS FRS is not really a true indication of as much as the doctors like to make it sound.
Don't get too caught up with numbers. Clinical trials use them a lot, but they have to use something to measure.

Finally breathing. It is true that you can live without your legs functioning all your life. But you need your breathing muscles. However, if your husband has elected for invasive ventilation, even losing this function is not the end.
Bipap started early in decline can keep a PALS in a good QOL place for years, even when their numbers on testing are very low. Again numbers are useful clinically as they need some way to measure, but are not as important for you and your husband as is how is he feeling with the supports he has. If he feels he needs more support breathing, that means more than any hospital test.

I hope that tomorrow you are going to get documented details on all that happened with tests today so you can review - or maybe you will be able to access them through his portal?

Try and relax tonight, the hard bit is done by the sounds of things.
Tomorrow, be prepared to ask all the questions you can think of and take a list.
Make them stop if you want to make a note of any reply.
They are there to help you and your PALS after all!
 
To clarify, CALS need not list a diagnosis date as any kind of policy. It's a matter of preference; I, for one, did/do not. We do ask PALS to do so, however.

Feel free to post the PFT (breathing test) results if you would like feedback. You should be able to get the report and all other results via the clinic portal (Baylor? Methodist?) Not to hijack or anticipate the results, but if it turns out that your husband is on the bubble for BiPAP reimbursement (the criteria lag published studies), it might be worth it to buy a BiPAP on your own (any doc can write the rx) and use it as a backup when you get the reimbursed portable one later.

It is definitely overwhelming, the first clinic experience. Record with your phone, take notes, snap pics of the white board, -- you are entitled to any prompts you would like.

This sticky may help for tomorrow.

Best,
Laurie
 
Last edited:
OK I never say that a CALS must state a date of diagnosis.
But it sure saves having to say it over and again in posts they make, or be asked over and again. The OP has now written this in 2 posts, so I was simply offering a way to make it easier than stating or being asked again.

I hope I didn't come across as anything but suggesting it will be helpful in the future. Apologies in advance if so.
 
Thanks for the information, especially about the breathing. No worries about the diagnosis date. I tried to change it in my profile. I cannot figure out how to do it, so I just keep listing it in my posts. I’ll try again to change it in my profile.

I feel a little better today. I have my list of questions, my cup of coffee and a good night’s sleep so I’m ready.
 
I put in the dx date for you. Good luck today
 
Nikki thanks, you are the best 💚

Thinking of you today - so glad you slept and are starting the day prepared. We will try and help you make sense of anything you are still not sure of afterwards too.
 
Nobody should give you a prognosis. I know a guy who was told by his neurologist that he was fast progressing and he is at about the same place he was two years ago. I'm sure the reverse is quite true. Both Mayo and Johns Hopkins refused to even guess if I would be fast, slow or average. As you can see, I'm very slow. In the beginning Mayo was very worried that my FVC was only 69 but my inspiratory and expiratory strength were both way over 100% so they just wrote that and my total lung capacity (60%) were not indicative of my ability to breathe. As Mayo said, "you need more than one or two numbers to get the full picture of what's going on." In the meantime, my pulmonologist ordered a sleep study and prescribed BiPap. I ended up turning it in but my ALS doctor said when he thinks I need it he would prescribe it.

I've been around with this disease for quite awhile and there are vast differences in progression, breathing, and function. Progression rates can change and even stop for a period of time. They can speed up for no apparent reason and slow down for no apparent reason.

The only advice I can give you is try to stay ahead of the disease in planning for equipment, home modifications, and care. Also, take some time to do the things you love while it's still possible.
 
Iscah, someone in one of my virtual support groups mentioned his pulmonologist, so I asked, and various people recommended that I start working with one. My first attempt was a dud (didn't know how to order any DME!). Second was great. She said that I would need a bipap sooner or later so she proposed ordering one. I agreed, because I watched a webinar about breathing in ALS and the doctor mentioned that if one wakes up feeling tired (as I did), that would be an indication that a bipap would be helpful.

She warned me that I might need to do a sleep study, but as it turned out, insurance approved immediately without that, based on the ALS dx.

I noticed that people here recommended Astral. I called the DME places and chose to work with one that provides the Astral. Apparently not all do.

Regards.
 
Status
Not open for further replies.
Back
Top