Anyone had a muscle biopsy before?

Belbyr

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My GP mentioned getting one done to see if there is any autoimmune damage going on or a mito issue. My second worse symptom is muscle pain throughout my body coupled with elevated lactic acid levels and consistent (non-cancerous) protein in urine. Worst symptom is GI which is also a muscle... haha.

I heard Dr Systrom, who is new on the block of CFS and POTS research, is starting to do muscle biopsies on patients thinking there is a muscle/mito issue behind a large fraction of patients with CFS/POTS.
 
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I heard Dr Systrom, who is new on the block of CFS and POTS research, is starting to do muscle biopsies on patients thinking there is a muscle/mito issue behind a large fraction of patients with CFS/POTS.
I'm a patient of Dr. Systrom's. When I first started seeing him he had me get a skin biopsy to test for nerve damage. As for a muscle biopsy, a month or two ago got a phone call from a team at Baylor bringing people to Texas to do muscle biopsies--apparently Dr. Systrom had given them my information because my test results had markers indicating mitochondrial dysfunction. However, I don't think that Dr. Systrom is currently having muscle biopsies done in Boston by his colleagues at the Brigham or MGH. But I could be wrong--I last saw him six months ago and he might have started something new since then.
 

Belbyr

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Could you fill me in more on the muscle biopsy test with specifics?

I see my doctor in about 7 days to follow up on possibly scheduling one of these.

Was your skin biopsy for nerve damage normal?


My skin biopsies were normal in my leg from 3 years ago.

Any treatment recommendations made to you after your abnormal biopsy result?
 

Learner1

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I have done a muscle biopsy. It was painful for quote a while afterwards. Also had SFN biopsy and nerve conduction test.

A MitoSwab test is cheaper, less invasive/risk of infection, and can highlight where your mitos are having problems. The other tests just show damage - like the contrail of a jet airplane, doesn't tell whats going on in the engine.

I have had phosphatidyl choline IVs, NT Factor, and peroxynitrite lowering nutrients, which improved mito function.

I also have autoimmunity which is a separate project... I'm not sure it's one vs the other...

Have you had your B1 or amino acid levels checked?
 

Belbyr

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I have done a muscle biopsy. It was painful for quote a while afterwards. Also had SFN biopsy and nerve conduction test.

A MitoSwab test is cheaper, less invasive/risk of infection, and can highlight where your mitos are having problems. The other tests just show damage - like the contrail of a jet airplane, doesn't tell whats going on in the engine.

I have had phosphatidyl choline IVs, NT Factor, and peroxynitrite lowering nutrients, which improved mito function.

I also have autoimmunity which is a separate project... I'm not sure it's one vs the other...

Have you had your B1 or amino acid levels checked?

My B levels were ok, actually my B6 and B12 were very elevated so I backed off the B vitamin supplementation.

What specific test did you do for your mito, is it something I can do on my own or do I have to see a specialist?
 
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I’ve had two muscle biopsies on my leg done.

They were positive for small fiber neuropathy.

I haven’t been tested for mitochondrial issues.
 

Belbyr

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I’ve had two muscle biopsies on my leg done.

They were positive for small fiber neuropathy.

I haven’t been tested for mitochondrial issues.
I could be wrong but I thought all they needed was skin biopsies to diagnose neuropathy and not muscle, unless they were looking for something different?
 

belize44

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I recently had a cheek swab for suspected mitochondrial issues, and it came back positive for them. It seems that while I have sufficient mitochondria, they are not operating well or are poorly formed, if I understand correctly.
 

junkcrap50

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Are you going to get viral or infectious testing of your muscle biopsy?

Has anyone had viral testing of their muscle biopsies? What is the best test to do? At which lab is best to do these? (I imagine different labs for different viruses, no?)
 
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I could be wrong but I thought all they needed was skin biopsies to diagnose neuropathy and not muscle, unless they were looking for something different?
I’m so sorry, you’re absolutely right! I had a skin and not a muscle biopsy. My foggy brain confuses words so often.

I was mixing up the skin punch biopsy for the SFN with the time years ago when I asked for a muscle biopsy for mitochondrial testing.

I never got the muscle biopsy test I wanted and I’d forgotten/ given up on it, but I’m about to see a dysautonomia specialist at Stanford next month so I’ll try asking him about it.
 
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Hello again @Belbyr!
I had an open muscle biopsy of my right quadricep.
I am happy to share anything you want to know about my experience.
Why don't you send me a list of guiding questions?
I have my own medical appointment tomorrow. After I've recovered, I'll check this thread to see how you respond.
I hope that you are not in terrible pain today.
Zebra
 

Learner1

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My B levels were ok, actually my B6 and B12 were very elevated so I backed off the B vitamin supplementation.
The "gold standard" test for B12 is methylmalonic acid (MMA). If that is high, you are deficient in B12. Serum B12, the more commonly used test will be high if you are supplementing. I've had MMA be high, showing deficiency with serum B12 being 2000. MCV might be high with deficient folate or B12. Homocysteine can be high with either B12, folate or B6 deficiency.

Each of these nutriebts is important. If B6 is high, if it were me, I'd look into what you are short of that its not being used as its used in numerous important tasks.
What specific test did you do for your mito, is it something I can do on my own or do I have to see a specialist?
Any doctor cam order a MitoSwab. It's cheaper and less invasive than a muscle biopsy, anf csn tell you which mito complexes are misbehaving. For me, it was far more helpful than the biopsy.
 

Belbyr

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Hello again @Belbyr!
I had an open muscle biopsy of my right quadricep.
I am happy to share anything you want to know about my experience.
Why don't you send me a list of guiding questions?
I have my own medical appointment tomorrow. After I've recovered, I'll check this thread to see how you respond.
I hope that you are not in terrible pain today.
Zebra
I'm not too worried about the procedure itself, after all... I just had a bone marrow biopsy done, haha! I'm just looking to rule out a nerve, muscle, or mito disease. I know my small fibers are ok (from skin punches) but not sure about my gut where a lot of my issues lye.

I want to be as informed as possible before heading to these specialists that might do these types of tests, don't want to miss anything.
 
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Hi @Belbyr.

MUSCLE BIOPSY

The muscle tissue pathology report will be able to tell you a lot, depending on the skill of the pathologist. If you have the biopsy done at a local hospital, it is possible for the surgeon to send the tissue elsewhere for analysis. I would request that your tissue be analyzed by a dedicated NEUROpathologist.

I had my biopsy and analysis done at Stanford, simply because I am lucky enough to live within driving distance. I have heard that the Neuromuscular Disease Center at Washington University (St. Louis), is also top notch, and they also accept muscle tissue for in-house analysis, from out-of-house surgeons. There's a lot of muscle biopsy info at: https://neuromuscular.wustl.edu/lab/mbiopsy.htm

When you have a consultation with your neurosurgeon, he or she may already have a good working relationship with a particular pathologist or institution. Just something to think about beforehand.

Based on my own experience, the muscle analysis will rule in, or out, neuromuscular disease and mitochondrial disease. I do not believe that muscle analysis could point to a primary neurological disease, but I could be mistaken. I think that would require a sural nerve biopsy.

UNSOLICITED IDEA;)

I was thinking about some of your posts from a while back, and I hope you don't mind if I go ahead and share what's been on my mind. If I recall correctly, you and your rheumatologist had sat down together and decided that the bulk of your symptoms were muscular in nature.

Did he or she run a Myositis Antibody Panel for you?

Forgive me if you already know this: Myositis is an inflammatory muscle disease, and it is usually treated by rheumatologists. It can cause a great deal of muscle pain, which you have, and it can also affect the muscles of your GI tract, and you have proven GI dysmotility. It is also autoimmune, which you have mentioned that you strongly suspect given your Immunoglobulin and B cell test results.

It might be worth asking your Rheumatologist to run this blood test before a muscle biopsy, as it will take a while to set up your surgery anyway. My blood was shipped to the Mayo Clinic. I see that ARUP also offers a Myositis Antibody Panel. Honestly, with so much at stake for you, I would not recommend leaving such sensitive testing up to the local hospital, LabCorp, or Quest.

I hope you don't mind that I included an unsolicited opinion in my response. If you do, you can tell me so! :oops:

I wish you THE BEST of luck.

Zebra
 
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I had an open muscle biopsy on my thigh, ordered by my rheumatologist. Had pepared myself for a painful recovery but was pleasantly surprised by a completely painless recovery. Which made a nice chance to how I feel on a daily basis. Like you Pain is a major problem for me.

Happy to share the findings.....

A single COX-deficient fibre is present

Cd3, cd20, cd68 : confirms scattered small collection of T cells

MHC 1: patchy sarcolemmal up regulation

Conclusion: mild interstitial myositis

Interstitial myositis can be seen in association with various collagen vascular diseases, autoimmune thyroid diseases, recent viral illness, myasthenia gravis, and early in motor neuron disease


Due to other, more recent, findings I am now taking this and other test results to a geneticist with a view to a EDS diagnosis.
 

pogoman

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My GP mentioned getting one done to see if there is any autoimmune damage going on or a mito issue. My second worse symptom is muscle pain throughout my body coupled with elevated lactic acid levels and consistent (non-cancerous) protein in urine. Worst symptom is GI which is also a muscle... haha.
I had a biopsy done on my right thigh muscle almost 6 years ago because I had high CPK.
The doctor used local anesthesia as the electrical paddles normally used just caused me to get shocked.
Was sore for two or three weeks but didn't miss work except the friday day of surgery.

Mine was sent to UCLA for interpretation, their conclusion was a non-inflammatory necrotizing myopathy suspected to be a toxic myopathy.
Currently on rituximab off label treatment for necrotizing autoimmune myopathy.