Old 08-19-2015, 12:08 PM #1 (permalink)
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Default Anyone had opposing opinions from Centers of Excellence?

Without going in to which doctors said what, I've gone to Mayo Clinic (Jacksonville), UF Shands ALS Clinic (Jacksonville) and University of South Florida ALS Clinic, along with my local neuro who has known me for 15 years.

I got one "doubtful you have MND" one "you have ALS" and one "we'll just have to follow you clinically before we can make the diagnosis.

This has been ongoing since December and I'm losing muscle mass, legs are getting tired, fasciculations are systematically spreading (started in bottom of left foot, now they are entire left leg, left butt left hand and face. Now they are starting right foot.

The latest is that I'm hoarse and my voice is weaker. This was pointed out by friends and relatives.

Has anyone had such difference in opinions? It's getting harder to walk and much more exhausting. They've done so many other tests to rule out everything possible (most were done at Mayo Clinic.)

I've had to get ADA accommodations to teach one semester at home because I have to make the financial decision of either taking a monthly pension or getting the lump sum. It would be an easy decision if I knew for absolute sure one way or another. My local neuro is agreeing with the one who said ALS because he has seen the changes.
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Old 08-19-2015, 01:34 PM #2 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

This must be so frustrating. Do you know and understand the reasoning behind each opinion. They are presumably basing these opinions on your history, your clinical exam and your tests especially the EMG. Is it that they have different findings? Or is it that they are interpreting things differently?
If you have all your notes and tests you can at least figure that out. Then the questions may be clearer. Some neuros are extremely strict about El Escariol others if they are pretty clear where things are going may make the call a little sooner. Why does one seem to think it is not going to be ALS?
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Old 08-19-2015, 01:54 PM #3 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

A few thoughts:

In the question of ALS versus not ALS, a diagnosis is important for two reasons:

First, if the diagnosis is "probable" ALS, then Social Security and Medicare are expedited. I wonder if "possible ALS" gets that expedited treatment, too.

Second, if the diagnosis is a curable disease, then having a named diagnosis leads to the cure.

Finally, in any case, you would be treating symptoms anyway, so your university healthcare insurance should pick up that tab.

It's frustrating not knowing a diagnosis. I'm thinking that Dr Boylan or some of the others would be willing to write a letter, to whom it may concern, stating that you have suspected, possible or probable ALS, or whatever. We used such a letter for all our benefits.

I also wonder how the docs are coding your visits. How are they getting paid? They have to code some sort of diagnosis on the charge sheets.
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Old 08-19-2015, 01:58 PM #4 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

We went to Mayo Jacksonville and it was a waste for us. We went too early in the journey. Pals was still able to walk unassisted (relatively) and because he had been such a strong, muscular man - they couldn't definitely document muscle atrophy at the time although it was noticeable to us. His breathing was fine as well as swallowing. His reflexes were hyper and his EMG was abnormal, but not enough for them to make a determination. That was 15 months ago. Now Pals is in a permobile wheelchair although he can still stand and transfer. His voice is hoarse although speech is not slurred. He chokes on saliva only - does better when paying attention to swallowing food. And he is on a trilogy ventilator whenever lying down. Vital capacity is now in the 40s

It will be what it will be. We wanted answers soon. They just were not to be found. Some are able to get them much sooner than others.
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Old 08-19-2015, 07:09 PM #5 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

I'll try to answer all your questions. Some of the Codes from both Mayo and Shands were ALS because I was assigned an RN caseworker by Florida Blue to help me through the process, if necessary. She said in her first phone call that she only worked with MS and ALS patients and I knew they had ruled out MS with the brain MRI even before I went to Mayo. I'll be covered under Florida Blue and when I go on Medicare, it will convert to a Florida Blue medigap insurance. This is one of our good benefits at the college. At this point I'm not concerned over health insurance because it's a good policy. When I separate from the college, I remain eligible to stay on their coverage for my lifetime but I'll have to pay the premium (less than $500 per month as of now and that is within my budget). They pay all but $30 a month while I'm actively employed.

The ONLY reason I'm pushing for definitive answers is that I can elect to get $600,000 in a lump sum (in six months after switching from pension to lump sum.) That money would cover home health care workers around the clock, when necessary as well as special devices insurance won't cover and a remodel or new home to accommodate whatever time I have left. In order to the the lump sum, I have to make an election. In order to make an election, I must be ACTIVELY working. I planned on retiring in June due to other disabilities (Meniere's disease, for one) and take my monthly pension. Now I'm stuck, getting worse, wasting precious time working when I'm feeling sick and getting weaker and more stressed out.

Drewsmom, I also went to Mayo Jacksonville early on (when my local neuro detected hyper reflexes, then had an abnormal EMG) Mayo repeated the EMG and said it was possibly ALS and should "reveal itself within 9 months to a year. At that point I went to Shands for a second opinion and got in late January. Pretty much same thing. My local neuro noticed atrophy back in December (I had fallen twice.) Mayo didn't "see" the atrophy. I had been very athletic and extremely strong for a small woman. Mayo did refer me to their ALS clinic nurse for "counseling" and she did her own exam/questions. When Dr. Boylan found this out he wasn't pleased and said it was too early to tell. I had the pulmonary function test and was only at 65% but it said my diaphragm strength was in the normal range. That test was done at Mayo in December and took over 2 hours.

Shands saw atrophy and left arm weakness on the first visit. Their EMG was dirty as well but inconclusive. I had a clean MRI of full spine to rule out anything else CNS.

I gained about 10 pounds since December on a high protein, high carb self-imposed diet. All of it went to my waist, stomach and hips. My thighs did not gain muscle and the left one actually lost 1/2 inch.

Back to Mayo twice more. Back to Shands twice more. Finally, with opposing opinions, I went to USF ALS clinic in Tampa. They did not do EMG and their neuromuscular specialist said she couldn't be sure. She said what was throwing her off was my strength. She did say the voice was suspect and recommended an immediate appointment with an ENT to rule out anything else.

Now my Mayo primary care has referred me to ENT on Monday to check out my voice. She told me to do weight-bearing exercises to try to build muscles. I tried to explain to her my legs were tired from simple walking and she said break it up into multiple sets throughout the day......it won't hurt. I kept my mouth shut.

Nikki, I wish I knew the reasoning behind every opinion. The notes are as confounding as anyone could write. They contradict themselves over and over. It's like there were different patients at each visit. I've published textbooks and do technical reading and writing all the time. I'm very familiar with medical terminology and what I don't know I can find out through research. Through the college I have access to any medical journal and publication I need. I have friends who are medical doctors and they are as confounded as I. My neurologist is at a loss what to say to me, especially since reading all the conflicting reports. He reviewed everything and said everything else has been ruled out.

Thanks for letting me vent, here. I'm really running out of steam with work, taking care of myself, the condo, my dog. No family.

I do want you all to know you're in my prayers.

Kim
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Old 08-19-2015, 07:38 PM #6 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

It is frustrating being in diagnosis limbo.
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Old 08-19-2015, 08:46 PM #7 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

That is horrible. They each owe you an explanation of their decision process.
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Old 08-20-2015, 06:53 AM #8 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

It sounds like the confusion is in the EMG. I am not sure what "dirty" EMG means.

In my case they found active denervation in the EMG immediately and at Shands made the call right away. Even though prior to that due to my strength, very slight Upper Motor Neuron signs, and no visible muscle wasting, he was telling me he did not think it was ALS - then the EMG. The EMG clearly told the tale. I have since had it re-confirmed at Emory and Hershey, in both cases the EMG was clear. Since then upper motor signs have become more pronounced as has weakness and muscle wasting.

The Doc at Shands, after seeing the EMG, commented that it was very difficult on the first visit to determine muscle strength as he did not know what I was like before the problems began. He stated that given my past athletic history maybe I would have kicked him across the room in the past instead of just lifting him up. I know with the breathing this is true. My very first ever FVC done a year before diagnosis was over 150%. At diagnosis 130% now 60% and it feel like I cannot get the damn elephant off of my chest. So whats not to say the same is not true for our arm or leg muscles?

Press to better understand the EMG results.
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Old 08-20-2015, 07:33 PM #9 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

This is quite interesting. Steve showed mostly lmn symptons at diagnosis but presented with a paralyzed diaphragm.His first neuro did.the emg did not test his throat or diaphragm even though voice changes and breathing issues were present. Instead she went for muscles with fasciculations. Diagnosis was anterior horn disease probably als. Second neuro agreed and said als. First neuro then said als. Referral tousf als clinic gave steve a bulbar onset diagnosis but they said they use that for respiratory and bulbar onset. Then we go to the va....respiratory onset after review of tests, exam, and history. By the time steve reached usf he had umn symptons. 5 months later they were extensive
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Old 08-22-2015, 12:55 AM #10 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

Kim,
If you can post the EMG/NCV reports and any unresolved differentials in anyone's notes, it would be helpful. The rest of what I am typing presumes active and chronic denervation in multiple regions is seen on at least one, as well as lack of evidence for demyelination, myopathy, etc. In the absence of active lung dz (did you have a chest X-ray/CT to rule out neoplasms since these can connect w/ neuropathy?), there are few explanations for the validated features you report, including the 65% FVC.

There is quite a difference between "doubtful about MND" [which implies a differential, which is what?] and "waiting for full manifestation" as you know. This isn't a question of formal criteria any more, since you've had one formal "yes," but reality as to progression and prognosis. But atrophy or lack thereof esp. for someone athletic shouldn't be the key. I certainly wouldn't do any kind of repetitive exercise that tires you. Frankly, I'd find a new PCP 'cause it's important to have a good one with your comorbidities.

But meanwhile, you have an important financial decision to make and you are postponing retirement to make it.

If you have had a full spine + brain MRI as you mention, and both were clean (double-checking that all the pro/con neuros saw both sets), if you have no family hx of systemic dz or neuro d/o that has not been r/o in the differential and if you are satisfied with the systemic part of the differential (bloods to r/o toxins, endocrine myopathy, nutritional deficiencies and things like that -- I'd recheck the full boat on emed), I would strongly consider the lump sum option election, and retiring "on disability" thereafter.

I am also presuming that this weakness does not wax and wane, has never improved from baseline and that progression has been continuous. I presume also that MG and other mimics have been ruleouts, and that no differentials are pending specific testing.

Then I would start the SSDI/Medicare process using the doc(s) that coded ALS during this process, and carry on with dealing with ALS.

Without family with you, you have a lot to carry just for yourself. Yet it's as if you're carrying someone else's process instead. You have articulated clearly your plan to make use of the 600k and it's a good one. But you need lead time to make it happen and time is not on your side.

I'm very sorry that your time has been misused and for all that you face. I'm sure someone will suggest you go out of state for a 5th opinion, but I would spend the time with your dog, and doing things that need doing, which are more likely to add value for you.

Best,
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Old 08-22-2015, 08:36 AM #11 (permalink)
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Default Re: Anyone had opposing opinions from Centers of Excellence?

Since Kim sadly received a confirmed diagnosis yesterday I am going to close this thread
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