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kevinw

Distinguished member
Joined
Apr 15, 2008
Messages
203
Reason
DX UMND/PLS
Diagnosis
01/2008
Country
US
State
PA
City
Poconos
After going to a MDA clinic for 8 years I have been thinking about changing. My ALS Neurologist is top-notch, it's everything else that seems generic. Has anyone pulled off a change of clinics after so long? What did it entail? Would they accept my existing records (two 3 to 4 inch folders) or would I have to start from the beginning with all the imagining, lumbar puncture, and stuff? Does the ALSA recognize PLS as a form of ALS for disability reasons and paperwork?
 
When you say generic what do you mean? I've been going to the MDA Clinic at UTSW for nearly 14 years and the neurologists and staff are great. I've participated in PLS studies. They go out of their way to make sure I have everything I need. MDA covers any additional clinic visit costs and provides $500/yr equipment allowance which I rarely use. I go on ALS Mondays which can be a little busy but I can see many different people regarding other services. My neuro is doing ALS research so he keeps me up to date on what is going on.
 
billbell52...I will "attempt" to put it into words...lol. My neurologist is great, she has her own ALS foundation & research group also. The problem is "her" foundation is 2 1/2 to 3 hours away and into center Philadelphia (I am from the country & my wife can't handle driving in the city). So I guess she is "hired?" by the MDA to come to a MDA clinic that is only 45 minutes from me and drivable for my wife. So seeing her is great. The rest of the clinic has lately kinda fallen flat in the overall process. They don't mention any trials (although I could enter them at the neuro's clinic in Philly, but that's not MDA). The PT & OT people that come in are just passing through within minutes. And this is my fault, but I don't get into any kind of long conversation with them because they will bill me separate, even if it's just common sense stuff. Most of the time there is not an MDA Rep there to stop in. Also, there is not always someone there to do the FRS. The speech therapist is always changing and there is a young girl now that didn't know anything about voice banking or software like Model Talker. So she wrote prescription for me to make an appointment at the Assistive Technology Department, which I did. When I went they also were not familiar with voice banking to put into a device someday, and they didn't know anything about Model Talker. On a final note...don't get me wrong, overall the MDA has been great. I have a stairlift from their loaner closet and they helped with the cost of replacing the battery's in my power chair. It has just been the clinic that has been for lack of better words "disorganized or unhelpful" as a whole.
 
Ahhh..this just came to me. It has become un-personal and un-informative...like it's just a training session for the intern doctor that comes in before my neurologist. Then they talk to each other and compare their findings from the exam.
 
Yes, they would accept your records.
PLS is within the ALSA's scope.

But no 2 clinics are alike, be they MDA or ALSA. It is only an affiliation. The ALSA and MDA don't run them -- the institutions/universities do. Your neuro isn't paid by the MDA. She is paid by whoever owns/operates the clinic, often based at least in part on patient billings.

The impersonality you speak of is common. After the major DME is purchased, ALS patients are often considered uninteresting revenue units, since there is no cure and little excitement unless you like to watch progressive fatal diseases (or help those who have them).

The only way to find out if the clinic(s) you might switch to are better is to experience them or get feedback in places like here.

Best,
Laurie
 
Thanks lgelb...great reply. I can understand how things are "not exciting" and I guess there is more conversation to be done between the doctor & the intern. I guess I just started to feel like the third wheel in the room, although I guess there is not much great information to share with me (maybe no news is good news?). My main reason and/or thought for the post was wondering if an ALSA clinic would be more focused being as it is disease specific. Or I could just be thinking the grass is greener on the other side and I'm chasing rainbows thinking I would get more information. Don't know...just venting, ranting, frustrated with this PLS, and thinking out loud. Just sick of hearing about all this breaking news in research and it doesn't seem to go any further than reading the article. I'll shut-up now...lol
 
Well, this is one venue where we can all empathize with you. I feel sort of the same way-I go to the clinic, spend hours and hours, have a few folks pop in, do the breath volume test, have the neuro basically say, see you in 6 months. Get a handful of brochures about resources, and out the door. Keeping up with any possible trials and research seems to be up to us as individuals. The NIH has a PLS study group, Dr Floeter's project. But it's just tracking people over time. You're probably in the same spot whether you change clinics or not. I am fortunate that the regional ALS clinic is about a mile from my house. Lucky me.
 
Seattle MDA is terrible! They come in exam room after dr has left and ask if u need any equipment then say they will call and never do. This happens every three month when I go in. Ive told my neuro to save me the frustration and keep them out of my room. I deal with alsa only. I doesn't make any difference if u go to mda or alsa clinic u can still use both alsa and mda.
 
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