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Sunshine

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Hello. I writing to see if anyone can give me some information about EMGs and muscle biopsy. My husband is still in the process of being diagnosed. In different stages of MND, can different parts of the body be abnormal and others ok? My husbands previous doctor's EMG showed anterior horn disease on the left arm, and possible on tongue and paraspinal muscle. His new doctor didn't do an EMG on these body parts. He just did them on legs and right arm. Those came back ok except for right arm that he had previous problems with his ulnar nerve. His doctor was very busy that day and we were unable to ask questions after the test. We put a call into his office but are still waiting for a return phone call.

His physical exams are showing mainly lower motor neuron disease. The doctor started noticing upper motor neuron disease. His cat scans, mris, and blood work are ok. We are waiting for spinal tap results. He now has to get a muscle biopsy done. Has anyone had that done? Is it very painful? How long did it take to heal?

Thank you for any help anyone can give. It will help with some of our concerns. His doctor's office seems to be so busy it takes a few days to get call backs. It can be frustrating. Thanks. Sunshine
 

Al

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Hi Sunshine. Mind if I ask where you are located and is your husband going to a Neurologist or one who specializes in Motor Neuron Diseases. I haven't had a muscle biopsy. My Neuro didn't think it would show much so thought it wasn't worth the aggravation to me. I took that to mean that it wasn't a fun experience. Some of the others on the forum have had them. I think Mtpockets aka Big Al said once that he had one. I'll try to get you a link about EMG's AL.
 

Sunshine

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Al,

Thank you for the website. My husband is seeing a neurologist who specializes in motor neuron disease at Pennsylvania Hospital. His neurologist from Jefferson Hospital referred him there. His doctor is very good. We just felt rushed during our last visit. Sometimes we forget to ask something during a visit and we remember when we get home. The next appointment is usually a couple months away. That is one of the reasons I like this forum. It helps to get some information in between. Thanks again.

Sunshine
 

MtPockets

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Hi Sunshine

Sorry to hear of the problems your husband is having.

I went through the muscle biopsy and they took a sample from my upper right leg thigh muscle about 16 inches above the knee. I don't know if this is the normal place they use, I guess it depends on the symptoms. They sent my sample to 2 different labs and took about a month before the neurologist would definitely say I had ALS.

As far as how it went, it took awhile to heal and left a pretty good scar as it seems they took about a 1 1/2 inch sample of the muscle tissue. There was quite a bit of pain involved for a week or two afterwards, due to every time the muscle would move it would irritate the site.

The reason they said they did the biopsy on me was because all of my muscles were firing on the EMG test. The screen would go crazy no matter where they stuck me during the test, yet because I have nerve damage to my lower back due to a previous injury 18 years ago, they said they had to rule out all other options by doing the biopsy.

Good luck and God Bless, I hope this helps some.

God Bless
Big AL
 

Sunshine

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Big Al,

Hi. Thank you for your reply. It was helpful. It is kinda creepy thinking about having a piece of your muscle removed. We are still waiting to have it scheduled so I don't know yet what area it will be removed from. My husband is still working a physical job. It is a struggle for him but that is how he makes a living. I don't know how much longer he will be able to though. Do you think he should take a day or two off from work after the procedure? Thanks for your help. It can be hard staying positive. But all we can really do is keep praying! Take care.

Sunshine
 

slkfocus

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Sunshine:
I too am going to go to Pennsylvania Hospital. I had gone to Hahnamen and although the Dr. was good, I felt she did have the time to answer my questions. I have had several people tell me Pennsylvania was the best place to go.
So good luck
slkfocus
 

Sunshine

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slkfocus,

Hi. I hoping it was just a very busy day for them. The other visits with the doctor were very informative. This was the first emg there. I find that the secretaries for the doctor are not always consistent about returning phone calls. When it is not an emergency, I give them a few days to call back. I usually have to call again though. It is good to hear they do have a good reputation. The ALS clinic is there, so I am sure it should be a good place to go. His doctor talked with us about scheduling an appointment with the clinic after we get the results of these test. Everything we need is supposed to be in that one spot. Thank you for the info. Take care and God Bless. Sunshine
 

MtPockets

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Sunshine

Yes I would recommend your husband take a couple days off after the biopsy. I had to sit real still with ice on mine until it began to heal some. Every time the muscle moved it hurt, so I just sat and watched tv for a couple of days. Then again, I'm like a big baby when it comes to pain, haha... It may not bother your husband as much.

They had some deep stitches on the muscle that they warned me to be careful not to stretch the wrong way and pull them loose, and then of course the stitches on the skin, which were no big deal. Best of luck with the procedure.

God Bless
Big AL
:)
 

Sunshine

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Big Al,

Thanks so much for the information! I am sure you handled it well! This gives my husband a chance to discuss it with his work. It is a small company so any advance warning helps them. Thanks. Take care.

Sunhine
 

Beebe

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Hi Sunshine, My son-in-law Jack was diagnosed at Jefferson Hospital The spinal tap was the the determing diagnosed. Hopefully your husband's spinal tap will tell you what is going on. Why do you have to wait for the results? Jack knew right away. A day we will never forget! We joined the support group at Hahnaman the one associated with Jefferson was Doom and Gloom... Dr. Patterson is a lovely person request her. Have you checked out their site ALS Hope Foundation. We live in New Jersey . Ten minutes south of Toms River. Who was your Dr. at Jefferson? Jack was diagnosed April of 2006. He just turned 42. More later My Best to you , Beebe
 

Sunshine

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Beebe,

Hi! His doctor didn't have the results in my husband's chart for the spinal tap. He was supposed to check with his secretary. That was on 9/12. He was in for an EMG. The first one with this doctor. The nurse did the EMG on his right arm and legs. The doctor did the needle test on his legs and right arm. He said his legs looked normal. I started to ask him about his left arm and he told the nurse to do an emg on that side. He said he wanted to order the muscle biopsy and left the room. He didn't come back. The nurse thought he was going to come back in the room so we waited about 20 minutes. She said she couldn't find him so to go home and she would have him call us. He didn't call. I left a message on his secretary voice mail. She never called. I called yesterday morning and asked if she got my message. She said she did but the doctor hasn't gotten back to her. No explanation or anything. I waited around all yesterday for a call but no one called. So I am hoping someone will call today. I have a few questions and need to set up the muscle biopsy for my husband. I am trying to have it done down here in Delaware.

My husband saw Dr. Mintzer at Jefferson. I really liked him. He wasn't positive it was MND so he referred my husband to Pennsylvania Hospital. The emg from Jefferson showed anterior horn disease on his left arm and possibly on his tongue and thoracic paraspinal muscles. I need to find out why his new doctor didn't do the emg and nerve test on those areas. I also don't know if his legs can be ok at this point and have abnormal studies on other areas and still have MND or not. He does have weakness and cramps in his legs too. So I don't know. I just want to get a few questions answered. My husband is frustrated and hates going to the doctor. I will check out the ALS Hope Foundation site. Thank you. Sorry this is so long. Take care and God Bless, Sunshine
 

Beebe

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Hi Sunshine

Hi there, I was telling my daughter your experience with the Dr. at Jefferson. She said to ask you what kind of blood work they did they should see something. Heavy Metal testing,glucose levels were they high?We had an experience there as good as Drs. were no bedside manner She went right to the administrator of the hospital. You should have been told something right away and the Dr. should have finished the testing himself. As she said the Doctor works for you Do what is necessary to make them aware of this. She works in the medical field and is very up to date on what is going on especially with ALS. She would be more than glad to talk to you and help you with direction. This is a hard road to travel and we are all in this together. Hope we can help you along . My best to you , Beebe
 

Sunshine

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Hi, Beebe. We didn't have any problems at Jefferson. We are having problems with Pennsylvania Hospital where Jefferson referred us. I called today and asked for them to just give us an appointment, if the doctor is so busy that he can't call us or if she can't get the information from him. They can only get us in at the end of October. I asked her to at least find out if he can have the muscle biopsy at Christiana Hospital in Delaware or not. I don't know how long that will take.

All the blood work came back ok except his creatine was somewhat higher. I will send you my email address through private message so if your daughter wants to contact me she can. I would appreciate any advice she could give us. Thanks so much. Sunshine
 

Beebe

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Hi Sunshine

Hi there I sent you an Email message and my daughter's email address. Sorry the way I read your message didn't realize it was Penn. Hospital. Just what you need is more stress. More later. My Best to you, Beebe
 
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