About Multidisciplinary ALS Clinics

[Alex123]

I have been attending every 3 months an ALS clinic. I can see some advantages but also some problems. I understand that this is the modality of attention most recommended, but I wonder if it is the most beneficial for all or just some of the patients. While it is convenient seeing several specialists on the same day, that would be beneficial if most of the specialists are relevant for the particular stage the patient is in. One thing I have notice that I was not expecting is that while the neurologist is the same every time, other specialists are rotated and as they haven't seen me before they don't know much about my condition except for what they read on my record. The most troubling part is the pulmonologist, as respiratory problems are a very important part of this disease. I wonder if it would not be better to have a pulmonologist outside the clinic so that I can see the same one every time.
I would like to hear your opinions.
Thanks,
Alex

 

[gooseberry]

The difficulty with your idwa, Alex, is so few pulmos "know" als. Perhaps you could see one from the group that rotates thru clinic?

 

[lgelb]

ALS isn't even close to being common enough to feed a pulmo.There's also a limit to how much impact they can have on the course of the dz. In some clinics, a pulmo isn't even around on clinic day -- an RT does testing. If you see a pulmo at clinic whom you like, as Steph says, ask for a number where you can set up an outside-clinic visit. Same for anyone else you like and want to see more of. You can also ask not to see anyone who's useless.

As for the q3m clinic, that's a completely arbitrary interval and you should feel free to deviate from it if/as your needs dictate.

 

[Alex123]

Thanks Steph and Laurie for your advice. Although the pulmonologist issue motivated me to start this thread, I was also wondering wondering what other peoples opinion about ALS clinics in general were. At the support meetings I attend, I have heard some good opinions and some not so good.

 

[gooseberry]

Alex, I think it just depends. I thought clinic was great in the beginning, so did Steve. As time went on I fou d it much less useful but Steve wanted to go. He felt like if he was checking in at clinic things were ok. Once he had all the equipment he needed, It was pretty useless for us. Because he was also being seen at the VA, the clinic spent very little time with him. Last 4 hr clinic we attended was done in about 2 hrs and 1000 dollars.

 

[Dawood]

The main advantage of the clinic is the practitioners understand the disease, which is often not the case for non-clinic practitioners.

Not all clinics are ALSA certified. If yours is not ALSA certified, you might want to ask ALSA why not.

The RT at our ALS clinic has been far more helpful than any pulmonologist we have met. Most pulmonologists spend their time treating patients with lung diseases, not people with healthy lungs and weak breathing muscles, so not only are they unlikely to be able to do a good assessment, but they might even prescribe the wrong treatment. If you can find a pulmonologist with substantial experience with ALS or post-polio syndrome, then you would have a better expert than most PALS are able to find.

Similarly, the clinic OT has been far, far better than other OTs at assessing for equipment needs and knowing how to write up a bulletproof DME prescription.

Also, at the clinic they should be charting the progression of your Functional Rating Scale, which can be a useful tool for predicting which functions might be lost next and how fast. As upsetting as learning that information may be, it actually helps a lot to be prepared.

Finally, it benefits all ALS patients when people utilize the clinics, because they provide the basis for many of the trials that are being done.

 

[Nuts]

The RTs at our Clinic are incredibly helpful. My husband has been sent over to the VA to be followed by a pulmonologist only because he indicated that he will have a trach and vent and that is most likely where it will be done. The pulmonologist, a very knowledgeable man, refers to the RT's notes to determine Matt's progress.

As others have said, finding practioners who understand ALS is difficult. At the same time, if you don't need the services of a specialty, you should not waste their time or yours with a long meeting. Our clinic sends out a questionnaire before the appointment and schedules specialists based on PALS responses. They are also flexible on the day of Clinic and will send in anyone we ask to see.

 

[Nikki J]

There are also MDA ALS clinics, not just ALSA. My clinic is MDA at Mass General. I agree having practitioners that understand ALS is vital. You will see the difference if you require services out in the community and get regular PT etc

 

[KimT]

One of the issues I've had at ALSA Clinics is that I have other health issues that are not related to ALS. Although these issues are not related, they cause problems. For example, I have a heart arrhythmia that cannot be ablated and reacts to any stimulant, including caffeine. I have very bad GERD and migraine and that limit some of the food I can eat. Depending on the clinic, they may or may not support taking supplements, especially B-12 in high IM doses. I have a local neuro who is much more open to try new things and to understand that there are some drugs that I just can't tolerate.

I agree 100% with the pulmonary part. My neuro admits he knows nothing about the breathing end of the disease and my pulmo (highly regarded in this area) had no clue on the settings of the BiPAP. At least he agreed that I needed a BiPAP but left it up to the RT (who also knew nothing about the disease OR the model of the BiPAP. I've since seen a RT who works with three ALSA clinics in Florida so we'll see how that goes.