Just had Biopsy done could this be ALS?

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nnhood

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In 2018 I had what felt like a viral infection, like something going through my system. Got all kind of virus checks done, HIV, HTLV, Mono, Hep Panel, STD Panel... nothing showed up. Got tested for Lyme, had 3 normal EMG's at different places. That odd feeling of something going through my system subsided and was replaced with what seems to be slow muscle loss in my legs mainly but a little in my arms. I'm functional, but starting to notice some slight balance issues.

Just had the biopsy done and it's attached here. Really didn't say anything other than wait for progression. Which I've been waiting since 2018.
I was worried about Inclusion Body Myositis after Cleveland Clinic just had me walk on my tippy toes basically and said you don't have ALS... I'm like I know not right now, I'm saying could I have it 5 years from now, am I at the beginning stages.

Only thing that has been off and on abnormal in blood work is Sed Rate which goes between 2 and 30. I exercised at different machines in a gym and then was very sore the next day and urinated blood for 4 days, hematuria... then that went away. Excessive sweating/heat intolerance. Exertion makes it worse whatever it is. Normal walking is fine, I can run too... but probably could not do 45 minutes on a treadmill jogging.

Just wondered if anyone had similar symptoms or biopsy results and then found out it was this or that... thank you very much, Matt
 
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Nikki J

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Please block out identifying information before reposting the report
 

nnhood

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Here is the biopsy result with personal info redacted.

Narrative
Addendum
Phosphorylase, phosphofructokinase, and MADA reactivities are present and are
similar to the normal controls. There is no change in diagnosis, and this
report is final.
DL2
_______________________________________________________________
FINAL DIAGNOSIS:
LEFT THIGH MUSCLE, OPEN BIOPSY:
NEUROGENIC CHANGES, MINIMAL (see comment)
NEGATIVE FOR MYOPATHIC FINDINGS
DL2/DL2
COMMENT:
There is mild myofiber atrophy affecting both histochemical fiber types that
is consistent with neurogenic atrophy. The severity is mild and the findings
may not be clinically significant.

_______________________________________________________________
GROSS DESCRIPTION:
Part 1 is received fresh labeled with the patient's name, initials and
"left thigh muscle biopsy". It consists of 2 fragments of red soft tissue
received in prices isometric clamps with damp saline moistened gauze. The
􀀁rst segment measures 1.1cm x 0.3cm x 0.6cm. The second segment measures
1.3cm x 0.3cm x 0.7cm. A segment is submitted in Karnovsky's Fixative and held
in histology for up to one year. The specimen is preserved in a manner to
assure that appropriately processed tissue would be available if needed at a
future date. No embedding or preparation of thick or thin sections for
examination by electron microscopy for ultrastructural diagnostic analysis is
requested at this time. If EM is needed, it must be requested within one year.
2 segments were frozen for enzyme histochemistry. The remaining segment was
submitted for parafin sectioning in a cassette labeled 1 AM.
AE
AXE//AXE/AXE
MICROSCOPIC:
Hematoxylin and eosin stained frozen sections reveal a mildly abnormal
variation in myofiber sizes (10-60 microns) without an excess of internalized
nuclei. There are occasional scattered angulated atrophic fibers. Degenerating
or regenerating fibers or infammatory infiltrates are not seen. Gomori
trichrome does not reveal ragged red fibers or rimmed vacuoles. NADH-TR
reacted sections reveal no cores, targetoid or target fibers. Oil red O and
PAS stained sections contain no abnormal accumulations of lipid or glycogen,
respectively. Esterase reactivity is normal. ATPase reacted sections reveal
mild loss of the normal checkerboard pattern with a Type 1 to Type 2 fiber
ratio of 1:2 and mild myofiber atrophy affecting both fiber types. Succinic

Dehydrogenase reveals no SDH-rich Fibers. Cytochrome oxidase reveals no
COX-negative Fibers. Immunohistochemical reactivity for Major
Histocompatibility Complex 1 (MHC-1) is negative in myofibers.
No additional changes are seen on H&E stained parafin sections. Congo red
is negative for congophilia.
 

Nikki J

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Biopsies are not usually part of the ALS diagnostic process so you may not get PALS/ CALS responding. The report says this may not be clinically significant as the findings were mild. It is of course up to your doctor to interpret this is light of your history and exam but I doubt they will think it leans to ALS especially with three normal emgs and Cleveland Clinic saying no. I imagine they did this to rule out a myopathy
 

wishmobbing

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I wondered about why you would get a biopsy and post about the symptoms you have in an ALS forum. Three normal EMGs basically mean you're cleared for ALS. I interpret the biopsy as your doctor being thorough and wanting to get to the bottom of this. Keep working with your docs and trust them when they clear you of a bad option. A doctor might not be able to tell you (yet) what's causing your problem but he can very well exclude certain causes. Good luck!
 
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