Andy's Swallowing & Pulmonary Function test

[L4dybugg]

~Update~

Called the Neuro today, and just so happened they were already on the phone to Nashville faxing his info in.

They finally got Andy's muscle biopsy slides in, also the swallowing test back. We are finally getting somewhere. Now I have to get my hands on all of his tests, films ect.

The nurse (at neuro) said, that they had faxed his info to them twice, and had not heard back from them yet. The way it works there, the dr. can't call them, it is just a fax number, they send in the info, the dr. at the ALS center has to accept it, and then they call the neuro back. (That is what the nurse said).

Called the ALS Center in Nashville, and talked to them, and they got all of Andy's info. And said that they have just received it and have accepted it. They said that most likely since they are the only ALS center around close, that the insurance usually will pay more than what they said they would. Which is what our insurance company told us. We also already have the money for our first visit. The lady there at the ALS center said we may not need to pay anything upfront. But we are still going to be prepared to do so just in case.

The appointment is set for May the 7th. She said she would call if there was a cancellation. (But I will be calling to see if there are any sooner cancellations). She said that they are so covered up, and it is hard to get in.

Andy is now following his diet. All we can do now is wait, and pray. ;-)

Lori

 

[rose]

Lori, did you mean to write "May" 7th?

 

[L4dybugg]

Yes that is his appointment date, May 7th 2009 to the ALS Center. That is the soonest they can get him in. I'm just praying we can get in sooner. I will be a calling. I know it is a shame he has to wait that long.

 

[KANSASTOM]

May 7th is really unaccepatable. What about talking to your family Dr and see if he can persuade someone in the local MDA clinic to look at Andy. I did not have a diagnosed of ALS but I still was accepted at the MDA ALS clinic, with the help of my family Dr.

 

[lovelily]

Hi Lori....So sorry that you have to wait soooo long to get an answer for your husband. Prayers for a quicker appointment! :smile:

 

[L4dybugg]

He has been accepted there, but look how long it is going to take. I would think the Neuro would pull for us to get there sooner. I can try and talk to the family dr. but I know them, they will tell me it is up to the Neuro to do it. I will still call.

It seems every turn, we are up against a brick wall. That is way to looooong. I'm worried about his swallowing, and how fast he has been progressing with it. I don't know what else to do, but call, call & call. and pray, pray, pray for a cancellation. :sad:

Please help us pray for a cancellation.

Thanks Lori

 

[planningguy]

I really do hope you get a cancellation. Six months seems so crazy given the situation.

Best of luck,

Robert

 

[rose]

Lori, Re: Andy's swallowing.... Even though its important for Andy to get in to the ALS clinic, the clinic is probably not going to be able to help him any differently than the speech pathologists that you've already seen. I'm sure the clinic has their own sp's on staff, but you've got the ones that tested him to help him right now. Please make sure you keep in contact with them as they will be able to continue helping with him. Usually one sees the speech pathologists about every 3-4 months for re-eval unless new problems crop up. Then they should see him sooner. They might also like him to have some swallow therapy sessions in the interim.

Let his GP or neuro - whoever it was that set him up with the speech pathologists - know that if its going to be that kind of wait for him to be seen in Nashville, that he's going to need another referral to the speech pathologists for either swallow therapy or re-evaluation, so that this can be pre-arranged, and something else you won't have to be fighting for when its a need to be seen right away.

The problem with him not getting in to the clinic any sooner has more of a direct effect on a delay of diagnosis, and hence his ability to apply for SS disability. Also, of course, him being able to start with Rilutek if he desires, and/or participate in trials and studies. Another benefit will be any financial help the MDA will be able to offer, that I think comes after diagnosis. I'm not 100% certain about that though, they may help now. (but I don't think so)

This is all going on the assumption that he does have a form of MND. If its not that, and is treatable, then that is even more of a reason to get him in as soon as you can so treatment could start.

Looking at his health and how to keep him as good as possible while you wait, there are still ways to go about it.

You'd said you were most worried about his swallowing, but then, there's his breathing - which if he's not getting in soon should be addressed by a pulmonary doctor that has some understanding of the ramifications of possible MND. I think you said he's already on CPAP. He probably needs BiPAP, and this is something else that maybe can be accomplished by your local doctor instead of waiting on an ALS clinic visit. I can tell you from my perspective with using the CPAP on trial long enough to be allowed to go on to BiPAP, that I'm really hating this machine! and its not all just because i need to become more accustomed to it. I have always had more difficulty breathing out than in, and so I'm fighting that constant force of wind, regardless of whether or not its keeping my soft palate open. It sounds to me like your Andy has considerably more advanced problems than I do, so I can only imagine how much better he would be feeling all the way around if he could go ahead and be put on the BiPAP. The least he can tire himself with this, the better.

So, these are things that can be done while you're waiting, and even if the MDA can't offer you financial support yet, maybe they can help with recommending a pulmonary specialist for him to see around where you live (even if its the one that is already his doctor) and working with that physician to get him the respiratory support he needs. Also, depending on how much his limb weakness is limiting him, they should be able to steer you to a physical theapist and occupational therapist that is in your insurance network. If the MDA does not handle communicating directly with his primary care doctor, (or neuro) about getting him set up to be seen by these therapists, perhaps they can give you the names they know are good in your area, and you can approach the doctor asking for referrals.

One of the benefits to attending a Multidisciplinary ALS clinic is that they've got all of these specialists there in one place, and its just a matter of sitting in an exam room and having the various people come in and meet with him, rather than trying to do it all independently of each other. Plus, of course he needs the expertise of a neurologist who's focus and experience is MND. But, if you can't get this in a timely enough fashion, there's more than one way to skin a cat.

I know you've got to feel overwhelmed at times, just know there's always someone here to listen. (hugs!)

 

[KANSASTOM]

The MDA clinic is picking up the cost for everything my insurance won't pay for. It is also important for Andy to have a baseline now. Is the ALS center you want to go to part of the MDA organization or is part of a university?

 

[brooksea]

Lori,

Y'all are smack dab in the middle of 3 ALS certified centers: Charlotte, Lexington and Atlanta. Looks like Lexington is closer.

ALS Association Certified CentersSM
University of Kentucky ALS Multidisciplinary Clinic
Lexington, KY
The ALS Center at Emory University
Atlanta, GA
Carolinas Neuromuscular/ALS Clinic
Charlotte, NC

Got to the ALSA website -

http://www.alsa.org/community/defau...e019042bf-68F29262-188B-2E62-800B6110E3F9AD75

I would call these centers before I would wait til 05/09. Your husband cannot afford to wait that long to get the multidisciplinary help he needs. You will have nothing but red tape it sounds like in dealing with your insurance. SSDI/Medicare has it's problems, but with ALS, they usually are understanding with the knowledgeable doc in the picture. I don't think your PCP gets the big picture of what could be wrong with your hubby and I find it appalling that an ALS center would make your husband wait that long, with the possibility of ALS.

I would independently call all of the centers to see what their policy is for some with a diagnosed of possible ALS and whether they would require such a wait.

I can't think of what else you could do, unless your husband was to exaggerate his symptoms, ie, breathe less enthusiastically on the FVC test.

You may want to try to enlist the help of the ALSA in your area or MDA.

 

[rose]

Lori, do you and Andy have family or close friends to help you wade through this? I was just reading CJ's advise to you, which is excellent, and I realized that we're all giving you things to do - which really need to be done, and we have no way of knowing if someone is helping you with this.

I hope the MDA can help you. I read Tom's post where he said they picked up what his insurance didn't cover for his ALS Clinic visit, but I don't know if that is because he (I think) had an ALS diagnosis, which then was rescinded. Regardless of official diagnosis of Andy's illness, it is neuromuscular and the MDA is bound to be more proactive than his local doctors have been (so far at least) in getting him the help he needs.

I echo CJ that he can't afford to wait 6 months, and even though, like I'd suggested earlier, you could try to get him seen by the various specialties local to your area, that is going to take a lot of time away from him if he is still working. If he can get into a clinic, not only would he see practitioners that are familiar with his type of disease, but it can be done in a more concentrated time span - one day of appointments instead of one here and there.

Keep us posted :smile:

 

[L4dybugg]

Got better news

Talked to the nurse at the neuro today, and they said that is the norm to set the appointment out that far. But she said that 95% of the time paitents do not have to wait that long, She said most likely he will get in either this Dec or Jan. They send people there all the time, and there is always cancellations. I will still be calling. Also the neuro has a patient right now that is needing to go to the MDA/ALS Center, but is not wanting to go. And the neuro is going to put Andy in her place. This will get him in alot faster.

She also said she (Neuro) wanted him to go there because the drs there was the best in the area of all those around in my area. I trust her word, she was really concerned about Andy.

The dr is getting me all of his tests, mri, ect. and is putting them on a disk for me, and this will be put in my hands. I will be getting this any day now.

Kansatom- no it is not part of the MDA assoication, but there is one up there. There is also one closer to my area. But I think he has to be diagnosed before they will help us. But I will check into this.

Rose- yes we do have family and friends to help out. I am working on getting all of this done as fast as I can. I agree this does not need to wait.