Old 09-23-2018, 12:21 PM #1
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Default Progression over a year

I have a closed thread about atrophy in my gastrocnemius.

Here is my story until now.

May of 2017, tore gastroc. At PT they thought it seemed neurologic and their hypothesis was that the tear was secondary to existing atrophy that I had not noticed. My toe taps on the affected leg were very slow and hard to do. Ortho said there was nothing they could do. Neuro did EMG that was mostly normal, just showing damage in the single muscle, brain and spine MRI were good as was blood work. I carried on that I was just weird and wasn't healing.

Carry on to this summer. I can't go up stairs at all. My handwriting is barely legible and it is very hard to write at all. Typing is ok though. The right leg cant raise straight up even in a chair. I can go to the side but not up. PCM sent me back to neuro after an MRI on my leg showing more atrophy and that it continued up my leg to the thigh.

Neuro sends me for a muscle biopsy. It comes back definitive for nerve disease/damage but was not done in the atrophied muscle but a muscle that externally looked to be unaffected. The report reads "definite if mild changes of denervation induced muscle disease, with some small angulated atrophic fibers, a few hypertrophic fibers, and definite small groups of myofibers of the same type... Such myofiber type grouping is the hallmark of early denervation/reinnervation...The presence of some scattered small myofibers indicates that this is an active process."

Now neuro is different. Does a more thorough physical exam that before the biopsy was ordered. She tells me I had hyperreflexia last year but she dismissed it as some people just are like that but there is more muscle wasting now and the reflexes are more brisk now. She also tells me I am weaker on exam than last year. Orders 16 more blood tests, all are back and good. Brain and spine MRI are the 6th with EMG on the 8th. After that she wants a spinal tap and then to Mayo.

I had extreme shortness of breath after being intubated from the biopsy. After 2 weeks of it not improving I was sent for a lung function test Friday. I was only told it looks to be restricted not obstructed like with my asthma. It feels like my lungs are unable to inflate all of the way, like they hit a wall around them.

My questions are, can the biopsy show MND and does their use of disease mean that it is. Second, is the spinal tap crucial?
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Old 09-23-2018, 01:50 PM #2
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Default Re: Progression over a year

Mod note- past posts here: http://www.alsforums.com/forum/do-i-...f-atrophy.html

Hello- I'm sure someone more knowledgeable than I can help you with your questions. Sunday can be a slow day, so it might be a bit.
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Old 09-23-2018, 02:12 PM #3
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Default Re: Progression over a year

Since muscle biopsies are not usually done in an ALS work up I don’t think we have lots of members who have had one. Off hand I can think of 2 with similar results to yours. One was subsequently diagnosed with ALS, the other was not and , as I recall, another cause was found I am sure there are more people who have had them but these are results I remember and they illustrate that, like all tests even emg, it is part of the picture.

It sounds like your neuro has a good plan. The necessity of a spinal tap depends on the individual situation but can be very helpful in narrowing the differential. You have every rght to ask what information she might get from any test or procedure that will help make your diagnosis

Please let us know how things go. Good luck
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Old 09-23-2018, 02:25 PM #4
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Default Re: Progression over a year

Do you have the full biopsy report?

It cannot confirm MND on its own, no.

Asthma is a restrictive disease, so I am a little confused...I am surprised that you needed intubation for a bx -- do you have the PFT results? Did anyone discuss strategies for improving your breathing?

I would reconvene w/ the neuro after getting the MRI and EMG results, as to whether a tap is going to aid diagnosis. Normally, it won't.
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Old 09-23-2018, 05:49 PM #5
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Default Re: Progression over a year

Laurie, asthma is obstructive, not restrictive. Asthma is sometimes referred to as reversible airways obstruction.

There are many conditions that cause restrictive lung changes including autoimmune disorders, chronic emphysema (causes mixed obstruction/ restriction), chest wall deformities, scar tissue in lungs from previous infections, malignancies.

Muscle biopsy is not a routine part of the diagnostic evaluation of ALS but may be performed to rule out myopathy.

Findings on muscle biopsy in ALS are chronic denervation with reinnervation, but this is not specific for ALS. EMG is easier to do, less invasive, and can reveal abnormalities in many more areas.

Remember that for an ALS diagnosis, one needs to demonstrate weakness in at least 3 of 4 spinal segments (bulbar, cervical, thoracic, lumbar), and characteristic EMG abnormalities can substitute for findings of clinical weakness. Thus EMG covers a lot more ground than muscle biopsy.

So further workup including EMG is definitely indicated, but it’s premature to start worrying about ALS. There are other more common possibilities.
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Old 09-23-2018, 08:18 PM #6
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Default Re: Progression over a year

Sorry, I fell asleep at the wheel, Karen. Sometimes asthma does manifest with a restrictive pattern in obesity, scoliosis, etc. but that was not the point.

We should add "neuromuscular disease" for the record, to the list of possible reasons for restrictive disease. But as you say, a much less frequent cause than some of the others.

For lmk, I would ask for the PFT results because inadequately treated respiratory impairment from whatever cause could cause other issues (not to mention your discomfort).
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Old 09-24-2018, 01:48 AM #7
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Default Re: Progression over a year

I do not have more information from the rest yet. The ordering Dr. has to give me the actual results. It was not like this at all with breathing a month ago. I've had well controlled asthma for a long time but have never smoked and it's never been like this. In the test they gave me a breathing treatment which made no diference as the RT noted.

The only other oddity is that the incision from the biopsy has been painfully slow to heal. It came open and had to be resewn. At 4 weeks it's just now looking to be closing. I'm not diabetic.

My husband remembers the Dr. saying motor neuron disease as what she's looking for but that she can't diagnose it. I didn't know if that was from the biopsy or the biopsy and her examination as we can't remember if she said it before she did the exam or after. She did say that the blood and mri were to rule things out then Mayo would be necessary for an actual diagnosis. I think this is what is most concerning. I do have the full report from the biopsy if that helps and I understand it is not a typical tool.

I came here before because my pt was mentioning neurological issues as her thought when I wasn't progessing and was slow on some tests with them.

Thank you all for your answers so far.
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Old 09-24-2018, 01:51 AM #8
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Default Re: Progression over a year

I needed intubation for the biopsy as it was open. It's about a 2-3 inch incision down the center of my calf in the back.
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Old 09-26-2018, 07:54 PM #9
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Default Re: Progression over a year

I sort of feel unwelcome but wanted to post an update in case anyone had suggestions to share about how to navigate these processes. I saw my PCM for the the PFT results today. My lung volume whatever test was 82%. No evidence of copd or that it's from asthma. His words were that he sees it as progression of whatever neurological disease I have but that we have to figure out which one.
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Old 09-26-2018, 08:08 PM #10
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Default Re: Progression over a year

I don’t mean to be unkind but we need much more specific information if you wish us to comment. Was there only one measurement taken? I thought you had pfts which measure several different parameters. Have you had previous studies to compare? What is a pcm?

Is “lung volume whatever” FVC? 82% is considered normal if so
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Old 09-26-2018, 08:13 PM #11
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Default Re: Progression over a year

You’re certainly welcome here. It’s just that you’re still in the process of being evaluated. We look forward to hearing back from you after you get your EMG results and follow up from your neurologist.
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Old 09-26-2018, 08:24 PM #12
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Default Re: Progression over a year

I was only told 82% for whatever he was concerned with he read through lots of stuff. I'll figure this out on my own. Please delete this. I'm sorry I bothered you all.
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Old 09-26-2018, 08:57 PM #13
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Default Re: Progression over a year

I'm just getting this off my chest. It's messed up to pick apart someone going though this and practically make them prove by posting their records what their Dr. is telling them. I came back here for help because as the neuro said and I confirmed with pcm today that from previous tests(emg included), biopsy, and physical exam that I have some motor neuron disease. It's progressing. It's in my chart with both people I'm seeing as of now but I don't have copies to post to prove it to get support from here and that is what it is. Just because you are going through something terrible, you shouldn't take pleasure in being rude to others.
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Old 09-26-2018, 09:22 PM #14
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Default Re: Progression over a year

No one is making you feel unwelcome, at all. You're being asked to post results so that you can have a more thorough response so you that can feel more informed. I'm sorry if you feel otherwise.

Nikki, Karen and Laurie are all very knowledgeable members and have a good idea of what to look for, hence asking to look at your full results from the docs. It's for your benefit, not to be rude and unwelcoming.
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Old 09-27-2018, 07:20 AM #15
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Default Re: Progression over a year

I am sorry I misread your post as asking for input specifically about the pulmonary testing. Your doctor seems to have a good plan and is ordering the right tests. It is hard waiting to get full answers but hopefully they will be coming soon

Good luck
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