April 2017 Diagnosed

[Nikki J]

I am so happy to hear this. Good luck with your road from here

Thank you so much for returning and sharing your diagnosis. It will help others in the future and we love great news here!

Wishing you a long and happy life!

 

[WeirdTim]

Thought all this was over but received a letter last night stating the neurologist will not remove the ALS diagnoses without a muscle biopsy now. He said my EMG didn't show ALS but it wasn't clean either so he cannot rule out anything until the muscle biopsy results. Just another wave of anxiety is setting in no matter how much I try to control it.

Remember him saying ALS/nerve issues sound like popping noises on an EMG where mine sounded like crinkling paper. Have no idea what that means. He said something about it sounding like a muscle fiber issue not a nerve issue but who knows.

We will see.

 

[Lkaibel]

My husband's EMG was so loud. Pop, pop POP.

I bet whatever you hear confirms the good news of no ALS.

 

[Chrismarie]

Tim, this is such great news! Let's hope phrenic nerve damage will heal! My husband continues here with exercises and nutrition. Thanks for your suggestions. He has no bulbar symptoms and walks with falls, but is mostly limited because his breathing is very labored. He can hit 2000 on his spirometer and his oxygen stays at 96 unless he exerts. As for you, bipap is a godsend. We also attend als clinic where all doctors and services are centralized and easy to get to. They sent a physical therapist, but they had no experience with als and just gave exercises he was already doing. Plus they were positive to the point of irritation, saying they would have him hiking in mountains soon. No als patients prior, and clearly had not done research. We labor on ourselves and go back to neuro and pulmonologist in a month. Thanks for support. Chrismarie

 

[WeirdTim]

Well it's Sunday night and I received an automated message about my muscle biopsy results and I'm terrified. Expecting a call from my doc tomorrow but I won't be sleeping tonight. From what the below states, it's a very good indication of ALS . Can't believe they allowed this to be Sent out without the doc talking to me first.

Here it is:

Final Diagnosis

Skeletal muscle, right vastus lateralis, needle biopsy:

1. Denervation atrophy, active and chronic.







Comment

There is evidence of a neurogenic process. There is no evidence of inflammatory myopathy or any other morphologically distinct myopathic process.

Light Microscopic Description

The specimen is adequate in size and preparation. Two slides each of fourteen stains are reviewed. H&E and Trichrome stains reveal that the muscle fibers range from approximately 6 to 85 microns in diameter, with a few fibers as small as 4 microns. Some highly atrophic fibers occur as clusters of nuclei surrounded by barely perceptible rim of cytoplast. Most atrophic fibers are angulated. Fibers smaller than 25 microns in diameter are seen in groups with up to 7 to 8 fibers per group. There is one larger group of atrophic fibers which consists of approximately 15 fibers. Necrotic or regenerating fibers are not identified. Inflammatory changes are not observed. The connective tissue elements are unremarkable. There are no ragged red fibers.



In NADH-dehydrogenase reacted sections many atrophic fibers are over-reactive. In some fibers there are focal decreases of enzymatic activity which are patchy or central. Classic target formations are not identified. In ATPase reacted sections with preincubation at pH 4.6, 4.3 and 9.4 the atrophic fibers are of either histochemical type. There is some tendency for grouping of type 1 fibers.





Acid phosphatase reacted sections show some increases, mostly in the subsarcolemmal lipofuscin granules. The nonspecific esterase reacted sections show that multiple atrophic fibers are over-reactive. The muscle fiber glycogen content is normal in the PAS stained sections. The Oil Red O stained sections shows normal lipid content. The myophosphorylase reactivity is preserved. Cytochrome C-Oxidase (CCO) reacted sections show similar changes as NADH reacted sections. Unequivocally CCO negative fibers are not identified. The SDH and combined CCO/SDH reacted sections do not reveal any SDH over-reactive fibers.



The Congo Red stained sections show no evidence of amyloid deposits when reviewed with both light microscope and rhodamine optics.

 

[lgelb]

ALS is not the only neurogenic cause of denervation atrophy in adults. Chronic neuropathy is another such cause. So is polymyalgia rheumatica.

 

[Bestfriends14]

Sheesh, you've really been mucked around these last few months. Do post as soon as you speak to your doc. Hoping your automated message is something less sinister, such as what Laurie said.

 

[WeirdTim]

Thank you yet again Laurie. My symptoms have not changed for well over a year now. My breathing is terrible but is has been for well over a year. Breathing is what's keeping me from doing most things. But, the dirty EMG by two different docs and now results from the muscle biopsy without explanation is stressful. I get neck pain since the accident October od 2015 but my chiropractor or my TENS device works well to get rid of that pain. Lost forty pounds since October 2015. Also a weaker since 15 but I belive that's from just not doing anything because lack of breath. Still replaced the battery in my tractor the other day and was able to lift it.

Awaiting a call this morning from my neuroligist.

Thank you all again, have no idea how much it's appreciated.

 

[WeirdTim]

Doc just called. Said the biopsy showed a muscle nerve issue with some muscle wasting. He wants me to come and be examined again. He said if anything there are some signs of a lower neuron issue but he won't make a diagnoses of that.

The fact that I can walk, squat, raise my arms, get out of chair, sit up straight, stand up, speak, swallow all without issue but can't breathe well is odd to them.

Do I feel weaker than I did before the accident in 2015? Yes but I had breathing issues within a few weeks and my activity level went to almost zero, doesn't help i work at a desk all day on a computer. I went with 60% oxygen at night for 14 months, stopping breathing 124 times a hour.

Sorry for the book, just so so so frustrated. Why can't I just have heart problems like normal people?

 

[Atsugi]

Hey, Weird, I'm sorry to see you're being stressed out. But frankly, I don't see any clear evidence of ALS. I'm not so sure this second doctor is doing you any favors. They don't go around issuing terminal diagnoses unless it's really solid.

EMGs can be "dirty" for many things. The biopsy didn't say ALS. Your posts do not describe ALS.

My advice is to put ALS out of your mind and stay open to other possibilities. And unless your PCP directly prescribes some manipulation, lose the chiropractor. They tend to overstep their area of competency.

 

[WeirdTim]

Hey, Weird, I'm sorry to see you're being stressed out. But frankly, I don't see any clear evidence of ALS. I'm not so sure this second doctor is doing you any favors. They don't go around issuing terminal diagnoses unless it's really solid.

EMGs can be "dirty" for many things. The biopsy didn't say ALS. Your posts do not describe ALS.

My advice is to put ALS out of your mind and stay open to other possibilities. And unless your PCP directly prescribes some manipulation, lose the chiropractor. They tend to overstep their area of competency.

Just figured the Denervation atrophy, active and chronic findings were good indicators of ALS . Appreciate your advice, will do my best. Go in on Friday to see the doc. Just need to figure out how to convince myself to stop thinking about it.

 

[Chrismarie]

So sorry Tim to hear of continued uncertainty. Feels like you are in a battle and don't know the enemy. My husband has same symptoms as you. Only difficulty breathing with some tremors in limbs but nothing bulbar. He can walk until his breath fails, which is pretty quick. Bipap is his best friend for 8 hours at night/nap. He got final als diagnosis in July, even though his breathing issues began in April 2016, when his co2 levels shot up. Wish we had gotten bipap sooner but the diagnosis road is long and frustrating, especially for respiratory onset. We got the feeling clinicians didn't believe it. He does breathing exercises, weights for upper body, and is now started on riluzole. He did gammagard early on, to no benefit. Also did high dose antibiotic to rule out lyme. No stone unturned. We journey on! Thanks Tim for sharing. Chrismarie

 

[WeirdTim]

So sorry Tim to hear of continued uncertainty. Feels like you are in a battle and don't know the enemy. My husband has same symptoms as you. Only difficulty breathing with some tremors in limbs but nothing bulbar. He can walk until his breath fails, which is pretty quick. Bipap is his best friend for 8 hours at night/nap. He got final als diagnosis in July, even though his breathing issues began in April 2016, when his co2 levels shot up. Wish we had gotten bipap sooner but the diagnosis road is long and frustrating, especially for respiratory onset. We got the feeling clinicians didn't believe it. He does breathing exercises, weights for upper body, and is now started on riluzole. He did gammagard early on, to no benefit. Also did high dose antibiotic to rule out lyme. No stone unturned. We journey on! Thanks Tim for sharing. Chrismarie

Hello Chrismarie, as erie as it may sound there is some relief to hear your husband has what appeared to be the same symptoms. The neurologist seems to be having issues because my major symptoms so far are breathing and some tremors. I've had bipa p since January and it's great at night and naps. Thank you again....take care.

 

[WeirdTim]

My last post meant no disrespect or lack of emotion. Although no one wants this mess, it is helpful to know others have the same symptoms after you've doubted yourself when the docs have doubts.

 

[Atsugi]

Tim, please don't quote when you reply. Some of our community have difficulty reading with all those lengthy quotes.