Father-in-law possible ALS - clinic question

[Adennis0421]

Hi everyone. First, thank you so much for this forum! I've been reading a lot in the last several days and now feel ready to ask some questions. Forgive the lengthy backstory, but I feel like it might be important.

My 72 yo father-in-law began having difficulty swallowing followed by significant weight loss approximately 4 years ago. He was also experiencing a lot of mucus and coughing up. We had him seen by just about every type of Doctor and they did a whole host of tests. But none of the doctors could ever give him any answers. No stroke, no cancer, no Parkinson's. I know they did a test for MG at some point and even ruled that out. I know none of the doctors ever said anything about ALS at that time. Four years later we still had no answers and it was getting worse. He has a hard time swallowing, coughing (if you can call it a cough, it's so light) up mucus, and he is very hoarse most of the time. I even started noticing that his speech has become very slurred and sort of choppy. He weighs about 120 lbs and we are very concerned.

I recently took a new job and moved from our small rural southern Arkansas town to northwest Arkansas. They relocated with us because we didn't want to leave them alone with no caregivers. We got him into a great PCP who quickly got him in to a speech pathologist for a swallow test. She said he is aspirating almost everything and was surprised he hasn't gotten pneumonia yet. She recommended a feeding tube and for him to be seen by a neurologist. He saw a neurologist last Friday who said he needed to rule out MG but he suspects it's ALS. He set a follow up appt for three months but also said something about him going to an ALS clinic in Kansas City.

So my questions are does anyone have any experience with UMKC and their clinic? What about anything in Tulsa? Those are our closest major cities. But we have the means to go anywhere if necessary. Also, are there any recommendations of things we can do to help him in the interim for his excess mucus and other symptoms? He has agreed to a feeding tube as suggested but won't do anything until after our vacation the first week of December (which is another worry for me but he won't give up seeing the grandkids enjoy Disney and I don't blame him!) Lastly, I don't feel good about waiting 3 months before trying to get him into an ALS clinic, so I'm suggesting that he ask the neuro here to go ahead and refer to clinic. Typically how long does it take to get in to one? What about Johns Hopkins? Do you need a referral and how long does it take to get in?

Sorry for the lengthy post but my husband and I have so many questions and are so hopeful that it's something else all together. But we are seeing thing go from bad to worse pretty quickly. Thank you in advance for any comments or suggestions!

 

[lgelb]

Hi, A, and welcome.

I would not wait for the neuro followup to be referred to an ALS clinic, esp. given his swallowing issues and weight loss. His insurance permitting, pick one and call the neuro for a referral. There will be a delay even in the best case. You might read the stickies on getting a diagnosis and second opinions and get his records together for the years that he has been ill. With the history you describe, which is exclusively bulbar, I suspect the final diagnosis will be another motor neuron disease (not ALS per se) or another neurological condition that causes bulbar dysfunction.

I am fairly sure we have members with experience at both Tulsa and UKMC who will hopefully weigh in. I think KC came up fairly recently. Meanwhile, you can try the search box up top. That can also guide you to a lot of suggestions for mucus, such as pineapple/papaya juice, hot drinks, cough drops, Alka-Seltzer, humidification, a nasal steroid, a baby aspirator, etc. (As usual when I type from memory, I am leaving out several.)

I would recommend trying to get him on BiPAP if he has significant respiratory compromise, before getting the feeding tube, and either way, getting it placed in radiology (called a RIG) where he can be on the machine (if applicable) during the procedure. But he's going to need a diagnosis first -- Medicare is kind of strict on that. One consideration for the choice of clinic since you are playing catch-up is what is really easier to get to and deal with.

Best,
Laurie

 

[soonerwife]

Sorry to hear about your father in-law having trouble.

My husband has ALS. We see Dr Todd Dunaway in the new Tulsa MDA Clinic. Dr Edgar is in the same office as well and he is the one that started the new clinic this last February. They are wonderful. We also saw Dr Beason in Oklahoma City for his second opinion.

I had a coworker that loved the Kansas City Clinic. Her was visiting there quarterly but is now being seen in Tulsa as well. He had his feeding tube put in in Kansas City.

We asked to be put on the cancelation list for our first appointment and we were able to get an appointmnent with Dr Dunaway in just a few days instead of two months which is what was originally scheduled.

Good luck with everything. I would get in as soon as possible since he is having problems with weight loss and aspiration.

 

[Adennis0421]

Laurie,

Thank you so much for your reply. Your posts have been so informative and helpful. We are calling the neuro tomorrow to get a referral to Kansas City. In the interim, I will search and read as suggested. Hoping for the best!

Thanks!

 

[Adennis0421]

Sooner wife,

Thank you for the info on doctors in OK. We will for sure keep them on the list to look in to should we get ALS as a diagnosis and need a second opinion!