Doctor visit on Friday

[Barbie]

Need some advice on doctors for my Pals. He doesn't' go to the ALS clinic anymore. It is in Tampa and we are in Orlando so that is 1 1/2 hours away. and when we do go, it seems like just a big waste of time. they cant do the breathing test on him because he can't get his mouth closed on the tester and they do not have the mask or any other way of testing him. the speech therapist , ot and pt are old news for us after 7 years. Neuro looks as him and says well, you are doing ok. last time we were there, hubby and neuro have an argument over a peg and bi-pap (husband doesn't think they are necessary yet and doc does). When my husband was constipated badly I called them and they said to call our GP.

So we started just going to the GP. and he really seems like he is too busy to care, and he doesn't' really know anything about ALS. in fact, we went on Friday and he asked my husband when he was diagnosed with MS...(we have been seeing this doc for about 10 years) and he wants us to come in for every little thing which is not easy and will not jus prescribe over the phone or even take phone calls.

Grrr! a month ago we went in to get the script for a new chair. doc insisted on blood work for my husband. I took him to the hospital lab and had it done. then I had to bring him back in Friday to go over the results...which the doc said "all fine" what? no details? nothing but "fine" still don't have the paperwork finished for the chair... said to eat more. really? doc doesn't even know hubby has swallowing issues . prescribes some elder tonic to increase his appetite... which is really just a multivitamin like Geritol but more expensive. I talke to him about husband pee and sleep issues. he didn't even ask if husband was in any pain (he is not). did not address the sleep issue. prescribes flowmax to help with prostate. I give it to husband last nite and this morning he is so dried up. he could not breathe thru his nose it was so dry and clogged. I hope that is just an adjustment to the flowmax.

I think we have to find a new doctor for him.

I don't know where to start. there is a different ALS clinic in Tampa that maybe we could go to. but still that travel would be very difficult for him. and still hard if he is sick or has an immediate issue. our hospice doesn't have palliative care and they kicked us off last year. ( he wasn't dying fast enough they said). a local neuro does not seem to be the way to go, but a GP doesn't either. What is an internist? would that be better? is there anyone out there in my area who has a recommendation?

 

[MaxEidswick]

>I don't know where to start. there is a different ALS clinic in Tampa that maybe we could go to.

https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=tampa als specialists


ALS Clinics and Certified Centers of Excellence - The ALS ...
web.alsa.org/site/PageNavigator/FL_8_Clinics.html
ALS Association
By partnering with some of the best doctors and medical centers in the state, we ... Clinic in Jacksonville, the University of South Florida ALS Clinic in Tampa and ...
Department of Neurology-USF Health-Tampa, FL
health.usf.edu/medicine/neurology/als/
University of South Florida
Mar 26, 2014 - The USF Amyotrophic Lateral Sclerosis (ALS) Clinic in Tampa offers multidisciplinary treatment, supportive care and information to help ...
Neuromuscular Disease - USF Health - University of South ...
health.usf.edu/.../clinicalprograms/neuromusc...
University of South Florida
Feb 5, 2014 - Neuromuscular clinics are available in both South Tampa (at the new USF ... The USF ALS Clinic in Tampa offers multidisciplinary treatment, ...

 

[minnesota]

Barbie,

Pulmonologist would work plus a sniff test! That's who referred us to hospice and helped with everything! You're right--way past ot, pt services etc

Internal medicine docs are great, but be prepared for thorough testing etc and more time

Sorry you guys have been through so much! Smart gal to always seek out the best for your pals! With ya!

 

[Santa joe]

Barbie, after Joe stabilized, we were also kicked off hospice. Home health care was called in to handle a sore on his back. With that came a mobile doctor. What a blessing! There is no way I could get an ambulance and get him to a doctor as many times as we needed one. We have long since given up on the ALS clinic. What can they do? Our mobile doctor is wonderful. Compassionate, caring and amazing man. He comes over monthly, calls in prescriptions and has even ordered a mobile X-Ray to come to the house. He calls me back within 15-30 minutes. The other great benefit is he accepts Medicare and secondary insurance and does not charge anything over and beyond.

Please go online and see if there are any mobile doctors in your area. With ALS, the progression is such that there is a need for these wonderful doctors. Hope you find someone who is familiar with ALS.

Debbie

 

[MaxEidswick]

>We have long since given up on the ALS clinic.

I call it our "Death Watch" :-(

 

[rosec]

I think a Pulmonologist will be a good start too. May be talk to him/her first if s/he is familiar with ALS? Any home health agencies in town? Like Debbie says, the home health agencies have doc who will make house calls.
Good luck in your search, Barbie.

 

[MaxEidswick]

you might try here: http://webfl.alsa.org/site/PageServer/?pagename=FL_8_patient_family_services

 

[Barbie]

Max --we say the same thing! all they do is track the death march! at this point for us.

 

[texastracy]

Barbie
I'm so sorry you are going through this. We had to find a new family doctor when our beloved pediatrician and my GP both died from cancer within two weeks of each other. I got a rec from a nurse friend and we found a new GP. Young, with a small practice at the time - 5 years ago. When I was diagnosed he took the time to read up on my disease. When the order came for a pulmo doc he found me one with ALS experience.

Try another GP, just a few years in practice. Mine is in a clinic group, and they share in on-call duties. When I fell in the kitchen and got taken to the er by ambulance one of the docs met me and got the right people there to help. Our GP saved my husband's life when the GP wouldn't let him leave the office until the blood tests were back.


Got this site. FL_SupportGroups - The ALS Association

I think if you email the Orlando person, she could help you find docs that would be helpful to you.

Tracy

 

[Barbie]

I hate to say it, but I have tried many times over the years to get help from the ALSA and never really have. I have asked for doctor suggestions several times to no avail. they gave me the name of a pulmno once who they said was familiar with ALS, and we visited one time. he never even did a FVC or breathing test. he did an X-ray and told us to come back in a year! I dunno, I feel very frustrated.

Max, that is the clinic that I do not attend--Originally we went to Mayo in Jax, but the trip was too far(3 hrs). so we switched to
Suncoast Tampa. a couple of years later the USF clinic was opened in Tampa as well. We could change to USF, but really don't get much out of it and not local for immediate care.

Honestly, I feel all alone out here except for you guys. I do my best and try to cobble together help. don't feel like the medical community or the ALSA is any help.

Thank goodness for this forum

 

[SMP51]

........a local neuro does not seem to be the way to go,......?

why not? this is what we do. it works out great. I guess ALS is rare enough to be interesting to the guy. we get full attention when we visit and he is all about getting us what ever is needed.
We have a apt this wed but they wanted to reschedule us, we need scripts refilled(see him every 3 months) so Honey agreed to see his assistant, we'll see how that goes

 

[zoohouse]

Barbie, I am so sorry that you have to deal with a crappy doctor on top of this disease. The American system is quite different from the Canadian one, so I am not completely sure what the best way to go is. I was not impressed with Tim's doctor in Texas, found him to be quite lazy and all about the money. In Canada there is no restriction to what clinic you go to, as long as they are accepting new patients. Because I work in Emergency I was able to hand pick his doctor, even though he had a closed practise. He was able to get Tim set up with a neurologist within 1 week, and then a physiatrist the next day. Apparently approached the neurologist at a conference they were both at. Tim has been followed by the physiatrist who actually gave us her cell number so that we could reach her even after hours. When we found out that they did not have the MicKey feeding tube at the VA, or at the hospital I work at, she made a call to a the radiologist that she works a lot with and he did it right away. He also gave us his partners name, so that if there was ever any problems they were to be call and one or the other would come in and deal with it. We have been blessed that Tim has not had any other medical issues since his diagnosis, but I am confident that his GP would manage it well. But I have to admit that I am at an advantage to most because of my work. I and other nurses have often commented among ourselves that we wonder how lay people manage when there are times that we are very frustrated. I try very hard to advocate for my patients, and have stepped on the toes of one or two doctors that I felt weren't doing a very good job. Get a new doctor, and if you can get one to make a house call that would be even better. I wish there was more that I could do for you. If you ever have any questions about any of his complaints I would be happy to tell you what tests I think he should have.

Paulette

 

[vlcare]

Barbie: It's really important that you cement an ongoing relationship with a doctor. ALS Clinics will not help with commonplace issues. We know this for a fact.

My husband is now bed bound. He cannot turn or feed himself. I have a home health care aide (paid for by us) in the mornings. But he is eating well and surprisingly pain free. He is a hospice patient because the oncologist who treated him during a hospital stay ordered the hospice. In our case, hospice consists of (1) supplying pain medications or other medications to treat ailments not related to the diagnosis (such as UTI), (2) weekly nurse visits, (3) twice a week bathing.

However, hospice organizations have specific policies (along with Medicare directives) concerning continued eligibility for hospice. And I suspect it is the hospice doctor who makes the determination--not the doctor who ordered the hospice. So if matters are not progressing quickly enough to support continued care, we too could be kicked out of hospice.

My personal internist has told me in the past that he would help us in any he could--and that includes home visits if necessary. In my case this is very comforting. But he does live in a different city and is approaching retirement age.

The key to all of this is face-to-face on some regular basis with a doctor, so that you have someone when you need him/her. Frankly, if I were in your shoes I would find a pulmonologist and make him/her my new best friend.

By the way, I took my husband to a walk-in clinic when he developed an upper respiratory infection a couple of years ago. The doctor there was extremely kind and interested to help. And he certainly did help. Try showing up at a walk in clinic for the basic stuff. They don't need to treat his ALS. They just need to help with the issue before them.

Later I found a pulmonary group and selected a doctor who was both a pulmonologist and critical care physician. A good and kind man.

Good luck.

 

[affected]

It is so tough Barbie, and our system is so different but I will comment some things we found here.

Our local neurologist would have been HOPELESS and we never went near him. Neurology is a large field and not every neurologist is interested in this disease - one of the rare ones that they can't even do anything about.

Our clinic was 3 hours drive, so we gave that up early.

We found a physician with an interest in MND, and put ourselves under his care and he was so human and real in his dealings with us. He encouraged us on the importance of our GP, the allied health members and palliative care.

Our GP was OK, and we were happy enough with her, but she suddenly moved out of the area just around xmas. We tried the GP that was taking on her patients and immediately did not like her at all. We had to take an appt with a different GP a week before meeting the one taking on our old GP's patients to get scripts filled, and thought he had been OK and went back to him. He took us through the last months and to be honest he was amazing. He was genuinely interested and had a clue to start with. He was thorough, but he was happy to talk to palliative care nurses and to me by phone and make decisions too.

Barbie, could you make a little list of what you need from a new GP and start walking into doctors clinics and asking to talk to a manager there to help you find someone who fits the list? I've never done anything like that myself in Australia, but I would if that GP we found hadn't been any good for us.

 

[Barbie]

Making a list is a good Idea, Tillie. I just noticed that one of the scripts that we got on Friday does not have any refills. our gp has a standing policy that he will not renew any scripts without a visit. so that means we have to go back in a month...oh brother.

I am going to call the ALSA again and talk with them about recommendations. I will keep you guys posted