Old 10-10-2008, 03:54 PM #16 (permalink)
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Unhappy Trip to regular Neuro

Thanks MtPockets
I am doing my best. Yes I agree about the support, more so now than ever before. I know he is carrying a heavy load, and is scared. I am doing my very best to understand.

Andy had a real bad night, he was up all night long cramping so bad, he had alot of jerking or twitching going on with it. And he says his legs feels like weights now. It hurts to see this happening to him, and I can't take his pain away. I wish I could.

We went to the neuro today, but we did not get very far, it is getting very frustrating, still no diagnosed. She is one of those drs that will not hardly tell you anything, no matter how hard you try to get it out of them. She did alot of writing though. lol. I understand they have to do that, but hey we'd like some feed back here. lol. She did say that his oxygen was a little low. We still do not have the appointment made yet to the ALS Center in Nashville. They are working on it, they are trying to get his biopsy slides from New york. I understand that it takes time, and there is a process. But my husband is on the verge of not being able to work, and we still don't know what is going on. We gave her the disk from the chest x-rays, nothing much was said about that.

My heart just about broke in the office today watching my husband's face, as she said "we have to do more testing", and still no answers. He just about broke down and cried there. He told her about the depression starting in, all she said was, "that is understandable". And that was it, nothing more.

She wants him to go to a pulmonologist to do some pulmonary testing. And he has to go and do a swallowing test. I understand this takes time, but sometimes I think she don't even know what he has, she will not say anything much to us. I do understand she has to be sure before making a diagnosed. But I'm like this, if you don't know, then send him where someone does. It's like everytime we go back, we get conflicting info. We got more out of the neurosurgeon and the ER drs than her.

Now we have another concern, This ALS center is not on our insurance plan, it is out of network, and if they beat around the bush and get his appointment the first of the year, It's going to cost us a whole lot more, out of our own pocket. And Andy said if they wait that long, he might not even go at all. So he told her to get it before the first of the year.

So we have done all we know to do. And he keeps getting worse, and can't go much longer. With no answers.

All we can do now is just wait it out!

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Old 10-10-2008, 04:48 PM #17 (permalink)
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L4dybugg, based on his symptoms alone, his regular doctor should put him on a short term disability, and he cannot be layed off while on it (at least that's my understanding). Then you can take your time looking for the diagnosis.

If your local neuro cannot make a diagnosed on her own, and needs to send him to somebody else, it is her responsibility to find a neuro within your network.
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Old 10-10-2008, 05:04 PM #18 (permalink)
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Well my husband said they can where he works. Because they have done it a few times before.

The local neuro wants to send him to a ALS Center (Vanderbilt University Medical Center) in Nashville. It is the closest one, and just our luck it is not on our plan. It only pays 60%. for out of network.
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Old 10-10-2008, 05:34 PM #19 (permalink)
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At least he will not lose his insurance if he is let go while on Short Term Disability (again, that's my understanding). And I think you can request the neuro to send him to a facility within the network of your plan. If he goes on disability, the ball will be pretty much in their court to figure out what's wrong.
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Old 10-10-2008, 05:37 PM #20 (permalink)
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Well my husband said they can where he works. Because they have done it a few times before.

The local neuro wants to send him to a ALS Center (Vanderbilt University Medical Center) in Nashville. It is the closest one, and just our luck it is not on our plan. It only pays 60%. for out of network.
L4dybugg, the MDA will help with the cost of your husband going to an ALS clinic. Don't let the cost of it put you off from going there. Even though there are many costs involved with having this type of illness, generally speaking, the clinic appointments don't have to be one of them. If you've not contacted the local Muscular Distrophy Association in your area, this would be one more thing (of so many, I know) that you could do now, so that you're not worrying about expenses.

I'd also urge you to do what you can to go ahead with other needed diagnostic tests in the meanwhile, especially the modified barium swallow. Do make sure when trying to set this up that it is for the correct test, and not just a barium swallow. Even if its the doctor's office that sets this test up for him, I'd double check to make sure its for the correct one. There is a vast difference between the two. The modified swallow will be done in conjunction with a speech pathologist (not therapist) . It sounds (to me) like his thoracic muscles are involved too, so a video flouroscopy will probably be part of the test. (where the barium is tracked as it moves down the esophagus.) During the swallow study he will have to swallow tiny amounts with varying thicknesses and textures of liquids and solids. Some people also have to "take a pill". I had to eat some graham cracker with barium laced yogurt sandwiched in.

Perhaps you can see if he is willing to take some time off from work. The Family Medical Leave Act would cover him as far as any potential discipline from his employer over the absence. (so long as his employer has more than 10 employees) The human recourse department can supply him with the necessary forms to apply for FMLA. If you're employed outside the home, you too would be eligible for FMLA as his primary caregiver. If his employer pays into state disability, he could go the short term disability route, but that usually isn't available until all paid sick time is used up, where as FMLA uses sick time to pay the employee, and he would be able to to miss work as needed, and go in on days that he is feeling better. That is one of the big advantages to FMLA is the ability to work sporadically. I guess it can technically be done with short term disability, but its difficult because it involves separate paperwork for each group of absences.

Good luck to you both!

Last edited by rose : 10-10-2008 at 05:40 PM Reason: added more about FMLA
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Old 10-10-2008, 05:40 PM #21 (permalink)
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Boy, my heart goes out to you guys dealing with this. We pay lots more tax than you guys and may have to wait longer but it doesn't cost us anything. I've been seen by 5 neuro's since my first diagnosed by the first guy 5 years ago. Some things just suck.

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Old 10-10-2008, 05:46 PM #22 (permalink)
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Boy, my heart goes out to you guys dealing with this. We pay lots more tax than you guys and may have to wait longer but it doesn't cost us anything. I've been seen by 5 neuro's since my first diagnosed by the first guy 5 years ago. Some things just suck.

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Tell me about it! my neuro down at Hopkins is not "in network" for me, and my insurance company tries to bill it through the neuromuscular department, as other doctors that practice with her are in network. The insurance company told me its all in the coding! Then I keep getting notices from them (the insurance) saying that I may receive a bill from Dr Sumner for X amount of dollars, but a bill never arrives....
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Old 10-10-2008, 05:51 PM #23 (permalink)
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Thanks Rose,

Here is the test that he is going to have done: Rehab Swallow Study and she did mention there would be a speech pathologist there.
and a Pulmonary Function test.

And about contacting the MDA, does it matter that he has not been diagnosed yet?
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Old 10-10-2008, 05:52 PM #24 (permalink)
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One more thing about FMLA versus disability. If your husband has cause for concern that he could be laid off for taking the disability, he can still go the FMLA route, even if he doesn't have paid sick time coming to him, as it would be illegal for his company to discipline him i.e. lay him off due to absence. The trouble with taking FMLA unpaid, even if you can make it financially for a while without a paycheck, is if he has purchased long term disability with his benefits package. Long terms is usually pays out based on what one earned for a set period of time before missing work.
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Old 10-10-2008, 05:57 PM #25 (permalink)
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(our messages were crossing each other just now)

That does sound like the correct test for the swallow and also pulmonary. The pulmonary is going to be a lot harder on him than the swallow. (its easy even if you choke and aspirate like I do LOL)

I'd call the MDA, I'm not certain if you need a written iron clad diagnosis for their services , but I doubt it. I think you have the history to back up your needs and they should be very helpful to you, not only with concerns over cost, but other resources available to him....

Honestly, when I read posts like yours, I'm so glad that I'm the person with the illness, rather than the one that loves someone with these problems. My heart really goes out to you. take care, and big ((hugs))!
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Old 10-10-2008, 06:00 PM #26 (permalink)
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Thanks Rose we will check into it
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Old 10-10-2008, 06:28 PM #27 (permalink)
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L4dybugg ... You said We went to the neuro today, but we did not get very far, it is getting very frustrating, still no diagnosed. She is one of those drs that will not hardly tell you anything, no matter how hard you try to get it out of them. She did alot of writing though. lol. I understand they have to do that, but hey we'd like some feed back here. lol. We still do not have the appointment made yet to the ALS Center in Nashville.

I believe your neuro will have to write a report in order to refer you to the ALS Center. See if you can get a copy of that report. When I was trying to get an appointment at the UCLA neuro center, the paperwork was so screwed up you couldn't believe it. UCLA kept saying they didn't have the report, or they'd had it and lost it, etc. Fortunately I had a copy of the referral and faxed it to them, and then the ALS Assoc. rep called them and got the ball rolling. Your neuro should at least be able to give you copies of all the tests she's done.

I don't think MDA will pay until you get a diagnosed, but they will once your husband is accepted at the clinic.

My best advice: be determined not to let the bast***s get you down. It's your husband's life and health that is at stake. You will have to be his advocate, but once you get over this paperwork hurdle, he will get the treatment he needs, and there are organizations that will help you. Tell your husband not to give up.

We should all just move to Canada!

Good luck.
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Old 10-10-2008, 07:19 PM #28 (permalink)
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Bring warm clothes and snow boots for Ontario but you might not need them in lower B.C. LOL.

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Old 10-10-2008, 07:53 PM #29 (permalink)
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Rose- He has short term disability at work for 6 months only, but it don't pay but $100 a week. Don't that stink.
But, we do have our own personal disability insurance that will kick in after 90 days of being disabled, it only pays up to two 2yrs.

Al- lol. My husband said that they have a sales rep at his work that gets business from auto plants up in your neck of the woods. He said it was beautiful up there, and that there was good hunting and fishing.
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Old 10-10-2008, 09:31 PM #30 (permalink)
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L4dybugg,

Will add you to my prayer list. Jumping through hoops is the worst~!~! Especially with a neuro who won't make a defintive Dx. ( I'm there right now)

Hope your appt. gets bumped up in ahurry.

Cindy
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