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awieleba

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Hello,

I have a question to anyone who has this test done. Or has info they can share.

1~will it hurt?
2~my doc did not indicate where they will take it from. I know my weak area's best, should I Let her know where to go. ie.,my lower left calf/ankle along w/ left thigh. and my left hand/forearm.
3~will they take from more than one area and should they? does it not matter where they take from?
4~can this rule in or out als for sure? what about other diseases? how assured can you be by this test? along with clean emg, the emg was done within 1 month of notable twitching and thigh weakness.
5~I also have 3 month repeat emg in september, will the spots they take interfere with the emg results?(damaging/cutting muscle in area's)

I know we are not doc's but I know there are alot of people who have been through this and researched it greater than me. I like my doc but she can be hard to get a hold of and not always forthcoming with info.

I really appreciate eveyones willing and openness to share! this site has been a real blessing to me during this very scary time! I have learned more here than on google, and I only come here now to share info.

thanks again:-D

April
ps. sorry for typing errors, I am usually holding a sleeping baby while typing.
 

bluebottle

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April,

Purely based on my own experience. I had an open biopsy although there is a needle biopsy also. The skin is numbed so that bit doesn't hurt, however the muscle itself is not numbed as it interfers with the biopsy. You do feel a cutting sensation but it is over very quick and I can honestly say I was comfortable afterwards and went back to work the next day. The doc will decide where to take the sample from and will more than likely already be decided. I had only one area but they did take quite a lump of muscle!. Not sure about whether it can rule out ALS for sure, but I suspect so. It can also detect muscle disorders and I am not totally certain but maybe inflamatory problems also. I know an emg will interfer with a biopsy, not sure about the other way round.
Don't be scared it really is no big deal with a good doctor performing. Yes it was uncomfortable but not excruciating. They tell you about possible bleeding afterwards and no driving fo 24 hours or running for 5 days, other than that it's fine. I had desolvable stitches underneath and steri-strips on the top. With a waterproof dressing I was able to shower and go to hydrotherapy etc.
 

wright

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Hello April

1) It depends on a lot of things: where they take it . . . how big the biopsy is . . . the technique of the doc . . . etc.

2) It's always good to tell your doc about your symptoms so they know how to treat you. Let them know where you are feeling weakness and make sure they know where your atrophy is. Those are the places that the biopsy should be taken.

3) They can certainly do a biopsy on more than one area. That is something that they will decided when assessing you. It certainly can matter where they take the biopsy . . . so again . . . make sure you and your doc are on the same page with your symptoms.

4) A muscle biopsy is only part of the total picture. However, if they don't find fiber type grouping, then that is a very good sign the atrophy and weakness are not due to ALS. I believe your symptoms have been going on for some time (greater than 6 months) so fiber type grouping would most likely be evident. Having said that, fiber type grouping can occur for any type of chronic denervating condition, so it doesn't necessarily indicate ALS. There are also other things evident with a denervated muscle that I have written about in other posts.

5) It will not interfere with the EMG at all and the previous EMG you had will not affect the results of your muscle biopsy in the least.

A muscle biopsy can indicate many different things, including denervation conditions, myopathy, etc. As I said before, it is only part of the diagnostic process.
 

awieleba

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thanks for posting,

I am scheduled to have it on wednsday. So, I guess I should call the doc on monday and talk about where my main concerns are. (incase she forgot)

1) can you have a muscle biopsy to soon? This has been going on since about december with breathing issue's and fatugue. BUT, the main symptoms (leg issue, twitching, etc) only since march~that I noticed. I was real sick with other issues and I thought everything was that, so never took notice of anything untill twitching at end of feb. But my thigh weakness since Jan. I would hate to have to have one again. I guess my doc would tell me if she thought it was too soon.

anyone one else have this test for thier diagnosed? I am very nervous about the results.

Thanks!

april
 

elliekusa

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Hello April

1) It depends on a lot of things: where they take it . . . how big the biopsy is . . . the technique of the doc . . . etc.

2) It's always good to tell your doc about your symptoms so they know how to treat you. Let them know where you are feeling weakness and make sure they know where your atrophy is. Those are the places that the biopsy should be taken.

3) They can certainly do a biopsy on more than one area. That is something that they will decided when assessing you. It certainly can matter where they take the biopsy . . . so again . . . make sure you and your doc are on the same page with your symptoms.

4) A muscle biopsy is only part of the total picture. However, if they don't find fiber type grouping, then that is a very good sign the atrophy and weakness are not due to ALS. I believe your symptoms have been going on for some time (greater than 6 months) so fiber type grouping would most likely be evident. Having said that, fiber type grouping can occur for any type of chronic denervating condition, so it doesn't necessarily indicate ALS. There are also other things evident with a denervated muscle that I have written about in other posts.

5) It will not interfere with the EMG at all and the previous EMG you had will not affect the results of your muscle biopsy in the least.

A muscle biopsy can indicate many different things, including denervation conditions, myopathy, etc. As I said before, it is only part of the diagnostic process.
Melas and muscle biopsy......

My doctor wants to rule out Melas (which is a mitochondrial disorder) with a muscle biopsy. ALS is also listed on my paperwork as one of several possibilities for my symptoms(since I have both lower and upper motor neuron signs). Can they look at "everything" with one muscle biopsy? I've been told it depends on how they prepare the specimen once they get the muscle.

I honestly do not think I have Melas, but I know they are in the process of ruling things out and trying to find answers.

I have also been diagnosed with Hemiplegic Migraine with ataxia which they think is NOT causing many of the symptoms I have. They think I probably have two different neurological things going on at the same time. According to them I am an "interesting case". I am a Gulf War vet (first one) and I have had lots of neurological issues for many years. The symptoms have been MUCH WORSE over the past 3 months.

I will be getting more EMG's in about three weeks and genetic testing for some other disorders. I understand that for those of us that are "interesting", it will take some time to get things figured out. I am sure everyone here knows the drill.

Have a great day everyone.

Ellie
 

lovelily

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Hi April....First, the best to you with the muscle biopsy! My first biopsy was in my upper arm and I was awake. I felt nothing. Afterwards it felt like a mega tetanus shot. The doctor talked to me while he was doing the procedure. He kept me calm.

The second was in my lower thigh...I was put to sleep. That one was more painful. I hobbled for about a week. My incisions are almost 2 inches, but you can hardly see them now.


Ellie....If they are looking for MELAS they will be looking for 'red ragged fibers' typical of mitochondrial disease. Have you had any stroke like episodes or severe headaches throughout your life?

I believe they can look for more than one thing, if the doctor orders it. The best to you, as well!

I will put you both in my prayers! God bless you both as you search for your diagnoses.

take care
lovelily
 

elliekusa

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Lovelily,

Yes, I get Hemiplegic Migraines which leave me paralyzed and/or weak on one side but often without the headaches and NO EVIDENCE of stroke on the CAT SCANS. I was in a skilled nursing facility after the last two episodes in June due to the weakness and SEVERE coordination problems...basically I looked drunk when I walked.

However, I also have muscle cramping, fasiculations, spasticity, babinski and some muscle atrophy along with exercise intolerance and SEVERE fatigue. Up until April I was working out intensely in the gym and began to notice that I just could not sustain anything more than for 10-15 minutes. I LOVE to Exercise so it has been very frustrating. I use a wheelchair now for long distances...longer than a few blocks. So, we will just have to wait and see. I am not suppose to exercise except for basic ADL's and Range of motion type stuff.

Like I said, they think there is more than one thing going on here. I will get all my tests done in August (2oth-22nd) and then we will go on vacation. We will get the results when we return around the 18th of September.

Anyway, good luck to all you muscle biopsy "specimens"! :)

Thanks for all the wonderful feedback.

Ellie
 

lovelily

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Ellie...there is also genetic testing that can be done for 'MELAS'. I believe the mutation is 'A3243G'. You can ask your doctor about that, if doesn't show on biopsy. I wish you the best outcome!

take care
lovelily
 
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