Old 11-17-2015, 12:41 AM #1 (permalink)
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Default So alone, need advice

I was diagnosed with bulbar onset in June,2014. It is slow progression so far, but is getting worse. I still have use of arms, hands and legs, but can't talk and have to use peg tube for 90 percent of nourishment. I've been having more and more choking and breathing problems, especially in the evening. My primary care doctor is great and very carrying, but,admittedly, knows nothing about als. The clinic I attend consistently postpones the appointments.. , never returns phone calls, and the last visit, in August, I never even got to see a doctor.

My breathing is becoming worse. In the evenings my nose feels completely blocked, and almost any odors causes breathing difficulties. Also, what happens when my tongue becomes completely paralyzed?

How do I get help from a doctor who knows how to handle these als problems?
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Old 11-17-2015, 01:02 AM #2 (permalink)
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Default Re: So alone, need advice

What clinic are you using? We have several Floridians.

I think the answer to your question is either a new clinic or a new PCP (who doesn't have to be an expert but willing to read up and contact consultants as needed--and could that describe your doc?). Are you in touch w/ your local ALSA or MDA? They probably know some of the options. I would also ask friends & family about docs who are skilled in caring for the medically complex.

Are you using a BiPAP? Also search the forums on feeding tube choking; several possible solutions have been posted. Reducing acid/air/reflux is certainly part of it. Of course, it also involves body parts north of the tube, which is where BiPAP/possibly suction/the CoughAssist/the Vest come in. Each of those requires a prescription, but it doesn't have to be from an ALS clinic. Sounds a good pulmonologist might be your first move. Can your PCP recommend one?

Even simple things like an herbal inhaler (various scents so hopefully you could find one that doesn't trigger you), steam, saline gels, etc. can help. Consider a humidifier full-time, etc.
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Old 11-17-2015, 08:55 AM #3 (permalink)
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Default Re: So alone, need advice

Hi harlo - I see you're in FLorida. The ALSA Florida Chapter has a list of ALS Certified Centers of Excellence and Recognized Treatment Centers. Definitely check out their website and consider giving some of the treatment centers and clinics on that list a call.
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Old 11-17-2015, 10:19 AM #4 (permalink)
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Default Re: So alone, need advice

Hello Harlo, and welcome. Laurie (lgelb) is one of the most knowledgeable people here--she gives great advice. Please do follow up on her suggestions, as well as cmropen's advice about finding the RIGHT ALS clinic. This is a very complex disease that requires specialization. I've read about doctors telling patients that since there's only one medication for ALS and they can perscribe it that there's no need for a clinic. That just demostrates how little they know about managing this journey.

Let us know how you are doing!

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Old 11-17-2015, 04:38 PM #5 (permalink)
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Default Re: So alone, need advice

Thank you for your suggestions. The clinic I was going to was the one at USF Tampa. Interestingly, two other pals in my local support group had the same problem at that clinic. I am now changing to a Sarsot clinic, but they don't have an opening until mid December. I will ask the ALS coordinator for a pulmonologist recommendation, but getting doctor appointments here is very difficult. I do use a cough assist machine, and at times it does help, but there are times when breathing is quite difficult. I also keep a vaporizer on at night. Do I wait another four weeks to get help? In the evenings when I'm sitting there wheezing away, I do feel alone.
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Old 11-17-2015, 10:18 PM #6 (permalink)
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Default Re: So alone, need advice

Harlo, sounds like you should be using a BiPap beginning yesterday if not sooner.

Laurie, what about Rilutek/Riluzole? Could that help? Please comment. TB
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Old 11-18-2015, 12:23 AM #7 (permalink)
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Default Re: So alone, need advice

It's a bit odd that you'd be given a cough assist but not a bipap. As previously noted you should press that issue. A pulmonologist would be the specialist for that.

Riluzole should be strongly considered by any PALS but it will have little impact on symptoms although a few report it helps with sleep or fasciculations. It is used to slow progression.
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Old 11-18-2015, 03:02 AM #8 (permalink)
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Default Re: So alone, need advice

Harlo, any kind of doc, including one you knew pre-ALS, can write a script for a BiPAP. You can buy them used or new on your own, or go through a DME/insurance.

TB, riluzole is dealer's choice. As Greg said, it's to slow progression, not change symptoms. It has the best chance of doing something early in the disease. But the aggregate data are not compelling, so if someone doesn't want it for any reason, that's not surrender by any means. Some people here are glad they were/are on it. Others stopped it or never started it and do not regret that. Disclosures: I worked for the company that commercialized it. Larry wasn't on it.
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Old 11-18-2015, 08:21 AM #9 (permalink)
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Default Re: So alone, need advice

Harlo,
I understand many of the things you're dealing with,
myself.
Similar type diagnosis, problems w
med institutions, many same symptoms.
I don't have much to be able to tell you rt now,
but I wanted to write u.
Important: Do you live alone?
That is very dangerous for us.
Sincerely
Laura.
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Old 11-18-2015, 11:33 AM #10 (permalink)
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Default Re: So alone, need advice

Fortunately, I do not live alone. I have a loving husband. However, he has some memory problems and some serious health problems, so he does make all the necessary phone calls, but it is completely up to me to keep track and up to date on everything.

I have no trouble driving, shopping, and doing the laundry. In fact, I am still able to do my line dancing, which I'm holding on to as long as I can. I've been taking the Riluzole for about a year. I follow the protocol religiously, so maybe that's helping with my limbs.

My problem is I feel I have no medical person, who is familiar with bulbar onset ALS, in charge of my care. never a mention or explanation of the bipap or trilogy. Even though my husband called Tampa about four weeks ago and explained my situation was getting worse, we never got a call back. My friends who have cancer or heart problems all have doctors helping them. With my ALS, the only useful information I get is here, on this forum. Without all of you, I don't know what I'd do.
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Old 11-18-2015, 03:57 PM #11 (permalink)
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Default Re: So alone, need advice

Harlo, Sarasota Memorial appears to have a full blown ALS/MND program. Have to tried them?
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Old 11-18-2015, 04:18 PM #12 (permalink)
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Default Re: So alone, need advice

Harlo, something I learned quickly in dealing with ALS is don't expect call backs! It is up to you to keep calling till you get what you need, want! This applies to everything from appointments to power wheelchairs to medication. You or your husband have to advocate for what is needed. It does become a time consuming task but----- good luck. Vdonna
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Old 11-18-2015, 11:05 PM #13 (permalink)
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Default Re: So alone, need advice

Totally agree with you Donna. You have to be on top of everything and everyone. Sometimes it means several calls and advocating for what is needed. It can be tiresome and time consuming but must be done. Best of luck Harlo and make sure to come here for advice. Everyone here truly cares.
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Old 11-19-2015, 02:26 PM #14 (permalink)
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Default Re: So alone, need advice

Harlo, do you have natalie and brittany'email address? I have found that is the best way to reach someone. I also have doc katzin. Let me know f you need them.
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Old 11-21-2015, 10:54 PM #15 (permalink)
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Default Re: So alone, need advice

Harlo,
I'm in FL, too. I went to USF for 3rd opinion but have no experience with them.
I would think they would have been better at keeping up since their a teaching Medical School.
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