My first clinic visit

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Ryan mc

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Joined
Aug 14, 2013
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12
Reason
PALS
Diagnosis
06/2014
Country
US
State
Wisconsin
City
Saint francis
So today will be my first visit to the ALS clinic since being diagnosed. I'm just kind of wondering what to expect? Will they do tests over like a EMG? Will they do new tests? And also what types of questions should I ask that you guys feel are important but people may not think to ask of forget to ask?

Thanks guys! :)
 
Ryan, if it's a multi discipline clinic, you can expect to see a respiratory tech, a dietician, an ot or pt, a neurologist, probably a rep from MD, and possibly others.
 
>So today will be my first visit to the ALS clinic since being diagnosed. I'm just kind of wondering what to expect? Will they do tests over like a EMG? Will they do new tests? And also what types of questions should I ask that you guys feel are important but people may not think to ask of forget to ask?

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Dalvin's right -- if it is where you get 'em all together, they will measure your progression -- I call it 'my death watch' because mine is really a research clinic, so we are their live rats :).

If they redid emg's they would never see me again!
 
Ryan, i havd my first ALS clinic follow up appt last month. 4 months aftwr my diagnosis. I seen my neurologist who asked me how i was doing and if i had noticed any major changes. She did the strength tests and wrote me a perscription for riluzole. Then i seen a physiotherapist to asses my walking (i only have weakness in my legs right now) and we tried different walking assist devices to see which one worked the best for me. She also had the ALS society send me a teansfer chair for long distances. I then seen a social worker who helped me figure out disability income options and went over what was offered through our local ALS society. I think your first appt is to further asses where you are at and what is needed to help you, it seem that way here in canada anyways.
 
Expect a long day...Dalvin is right. They shouldn't repeat your EMG, because you have been diagnosed already.
They may take a blood sample for the MDA research. You will also be examined by one of the neurologists in the ALS clinic rotation.
Expect a visit from a pharmacist and a social worker as well.
The only part of the clinic that I disliked was the cognitive testing, it involved reading a page out loud and timing you, as well as repeating several numbers and letter combinations backwards...a bunch of short term memory tests and sensory coordination testing. This was very difficult for me because I had lost most of my ability to speak by the time I had my first clinic...it SUCKED!
Write down every question that pops in your head prior to the clinic date....if you are like me you will be nervous and forget everything day of.
 
Tom will be going to a new clinic in FL this August. We used to go to one in NC that was very thorough. It will be interesting to see the difference. In NC he saw a respiratory therapist to test his breathing, diaphragm, FVC, etc.; speech therapist who did some speech and swallow tests and talked about communication devices; physical therapist to monitor his movement; occupational therapist to determine if he was still capable of driving or if he needed any adaptive equipment; nutritionist to talk about measures for keeping his weight up; social worker who answered questions regarding Medicare, SS disability, etc., an ALS representative from the Catfish Hunter foundation, and lastly the doc! It was always a long day but well worth it!
 
Interesting comments. It looks like you guys have long appointments. My husbands first appointment is scheduled for 20 minutes next month at the ALS clinic in Tampa.
 
>It looks like you guys have long appointments.

-our quarterly clinics are a very loonnnggg full day ...
 
Gooseberry, that sounds more like a regular visit to see a neuro. A muti-discipline clinic will take several hours.
 
Dalvin it is our first clinic visit and it is with the neurologist. He originally had an appointment scheduled for this past Wednesday but a doctor retired and they decided to redo how they run the clinic. They sen tus a postcard to call for a new appointment and we were told it would be November at the earliest. I lost it on the schedular and she sent a note to the doctor. Apparently several other people being rescheduled were unhappy too because if you really complained, you were allowed to see the neuro on 8/11. Otherwise you are waiting til late November or early December for an appointment....kind of crazy when we called initially in May.
 
Oh, one other thing....it sounded like this was going to be an intake/triage type appointment to basically get my husband in the system. He is showing a fair amount of weakness in his right hand and arm and some tremors so I hope that coupled with his breathing issues they can help us understand where he is with his disease.
 
Our first visit with the ALS Clinic ran for about 4 hours. We met with PT, OT, a nurse for a pulmonary test, a rep from MDA, had blood drawn for Riluzole kidney check and met with the Clinic's director. They assessed my PALS current progression, asked questions and offered insight on how to do some things better. And we gave them some insight on how we were doing some things better than they suggested. We found it valuable for what we learned and for learning how well we were tackling the challenges of ALS. Our next visit, 5 months later, will be in October...

Jim
 
We have clinics here too in Australia. But for us it was over 3 hours drive away and in another state... This meant just a meat market to see a neurologist only as we accessed all the PT, OT, Speechie etc locally. Being in another state we couldn't even access those other needed services from up there.

We went twice, saw a different neurologist both times, so the second one had no idea really of what progression had happened except for 'measuring' and well we knew what had happened anyway, so only data for them, nothing for us.

We did not go back, but found a wonderful physician locally who has a great interest in ALS and is seeing nearly all the PALS in the area. He was better able to coordinate the other health professionals we needed, and most of them came to our home to see us which was even better.

With Chris being rapid progression too, 3 months apart for visits was useless. He was changing every week. But if there had been a very local clinic we would have certainly used it.

gooseberry that is shocking, being left so long before you will even get evaluated properly :(
 
Tilloe, The local neuro that diagnosed and referred my husband has continued to see him. If it were me, I dont think you could find a more caring, helpful doctor than her. But, my husband really wants to try the clinic at least once. For me, it brings back bad memories of the cancer centers when my parents and sister got treatment. It really makes me feel physically ill thinking about going with him but I know he needs me to be there with him. I will find a way I guess. Stephanie
 
Gooseberry which clinic are you going to? we use to go to Suncoast and really liked Dr. Didio, but if I was going for the first time I would go to The USF clinic. I think you are going to just see a neuro-- not a clinic. the clinic is definitely long and drawn out...every different discipline under one roof--that is why it is a clinic!
 
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