Back From Duke w/ new Questions

[asmileaday]

Went to Duke and we actually feel a little better now.

When the doctor did the exam he found a few things that we hadn't even noticed. The right side of my husband's chest was sunk in - we knew there were other areas that had lost muscle but didn't see that on his chest so it shocked us. After the exam we were told there were upper motor neuron and lower motor neuron problems. At this point the doctor didn't say ALS he sent us for a EMG. It came back clean. This of course thrilled us.

The doctor actually said that before the EMG he would have had a different diagnosed. We asked if there was a possiblity to have a clean EMG and later have a bad one. He said that it does happen rarely if you catch ALS in the early stages. Also, the arm pain my husband has is from something completely different. They believe he has "frozen shoulder" so he will get PT for that. He also said that we can't rule out ALS at this point but there are many other possiblities.

We are going to redo all the MRI, blood work, CT scans and then in a few months have another EMG.

Now for the questions
1) Have any of you had a clean EMG and later a dirty EMG and have an ALS DX?

2) What kind of DX do they give with UMN and LMN problems but a clean EMG?


Thanks for all of the support. I think before yesterday we just wanted to know what was going on. Today we are grateful that we don't have ALS DX so we are really going to live with a positive mindset and enjoy everyday.

 

[wright]

Glad to hear that you had some good news. We're all hopeful that the news will continue to be good.

I have had two clean EMG's, although the first one was only done on one limb and I had no atrophy at the time (just a little weakness). My second EMG was done on three limbs and in muscles of my arm that were atrophied. The only thing they found was slight fibs (+/-) in my right deltoid (I actually expected there to be more in other muscles considering they were atrophied) and a depressed SNAP in my ulnar nerve (a good sign, since the sensory portion of the NCS is clean with ALS). Other than that, my EMG was clean. I was told that a clean EMG in atrophied muscle is a good sign. I have been diagnosed with a peripheral neuropathy syndrome (most likely autoimmune in nature), relegated to the nerves that innervate my arms and upper torso. My symptoms (weakness followed by atrophy in multiple muscles) came-on very fast, too (in less than 6 weeks). Let's hope you can dodge the "ALS bullet" as well.

A couple of questions for you:

1) Does your husband have atrophy, other than in his chest? If so, did they do the EMG in atrophied muscle?

2) How many limbs did they do and did they do his tongue?

2) Was the NCS clean too?

 

[asmileaday]

I have been diagnosed with a peripheral neuropathy syndrome (most likely autoimmune in nature), relegated to the nerves that innervate my arms and upper torso. My symptoms (weakness followed by atrophy in multiple muscles) came-on very fast, too (in less than 6 weeks). Let's hope you can dodge the "ALS bullet" as well.




My husband was initially diagnosed with peripheral neuropathy. At Duke they pretty much ruled that out.
A couple of questions for you:

1) Does your husband have atrophy, other than in his chest? If so, did they do the EMG in atrophied muscle?

He said they did not do the EMG in the atrophied muscles. But they did it all over his body.
2) How many limbs did they do and did they do his tongue?

They did legs, arms, back and neck. They did not do his tongue.

2) Was the NCS clean too?
The first NCS was not clean but the last one was.




wright, I want to say I have read alot of your old posts and they have been very helpful. It is obvious you have spent a lot of time researching. Thanks

 

[Sammantha]

Emg

My fist EMG was like a map of exactly where i had muscle wasting and weakness. I had PSW's, FIB's and Facic's... The nerve conduction was normal. My next EMG was inconclusive but told not to worry and my third EMG was considered normal. Then i was sent to have my second brain and cervical MRI along with an evoked potential test. Even though i had these MRI's done recently. The doc was looking hard... Everything i read says that in ALS there is no such thing as a clean EMG after the onset of symptoms. So i wonder if it is not ALS what is it, i also wonder why my docs wants to continue seeing me and my progression if my last EMG was normal........ Confusing, isnt it. My internal local doc made the comment that some diagnosis are hard to give.

 

[ptich]

I read recently that EMG is just a highly sensitive way to detect subclinical (symptomless) denervation. Wich seems to mean that if you have atrophy with normal EMG, this atrophy is not caused by denervation, which is good news.

On the other hand EMG may not be not 100% reliable, I guess. I had 2 EMGs, one in 01/2007 (small fibs in 1 or 2 points, small Increased Insertion Activity in 5 points), the other one in 12/2007 (normal). It is still hard for me to beleive that I don't have ALS, considering a firework of symptoms I had at the end of 2006 (difficulties swallowing with some regorgitation, followed by long tremor with hand weekness, followed by leg cramps, followed by fasciculations).

 

[asmileaday]

My husband and I were talking last night and I was trying to reassure him that since the EMG was clean that was very good. Somehow I thought the EMG was done on all four limbs but they only did the right side and back.

This makes no sense to me. If there are issues will all four limbs at this point why wouldn't they do the EMG in all four?

I actually had convinced myself that this was definitely not ALS now who knows.

Sorry I sound a little frustrated this morning.

 

[CindyM]

It IS very frustrating! We know exactly how you feel. All this would be a lot easier if there was a test for MND's of all kinds. I guess that explains why there is no cure yet. How can they cure what they cannot even test right now?

Anyway, this is the place to ask and vent. We've all been there at one time or another. :-D

 

[wright]

Hello smilelady

So sorry to hear that you're not as calm as you were. These ups and downs will inevitably occur during the diagnosis phase, but we are all still hopeful that you will soon have some good news to share.

I do have a couple of more questions and then when you answer, I will reply:

Are you sure they didn't EMG his atrophied muscles and are you sure they didn't do a more extensive EMG? Like you, it seems quite odd to me, but there could be a rationale to it.

Take care of yourself and your husband.

 

[asmileaday]

Wright,

After the EMG I just assumed that they did all limbs. He had never said specifically. Then when we were talking last night he said they only did the right side and his back. Again today I asked specifically where they did the EMG. He said right foot (foot with the foot drop), right leg, right arm, and neck. He said they didn't do any on the left side and none in the area of his chest muscle that has atrophied (right side).

Thanks

 

[puzzled36]

I need to respond here because I feel bad information is being given and causing unnecessary fear. The paraspinous muscles of your back are the best site to test to rule out bulbar ALS. The tongue has baseline fibrillation and is too hard to stabilize to ensure an accurate recording. If you have an EMG of your paraspinous muscles (upper back cervical/thoracic spine area) that was negative - you DO NOT have bulbar ALS. Secondly, EMG's are not to be preformed on obviously atrophied muscles due to low CMP from prolonged denervation. The EMG needle should be inserted in clinically or subjectively weak but not obviously atrophied muscles to detect ongoing denervation/ reinnervative changes and or myopathic changes.

Smilelady - if they checked the muscles in his back I'm sure they were looking for abnormalities of the cranial nerves and ruling out Bulbar. I think you need to feel very reasssured that all though its obvious something is going on, it doesnt appear to be ALS.

Gina

 

[wright]

Hello again smilelady

Puzzled36, you more or less took the words right out of my mouth. If muscles are very atrophied, they more than likely won't EMG them. Your husband's muscles must be more atrophied than you stated. If they did the EMG in the other clinically weak muscles and it was clean, that is still a good sign. I'm sure they were thinking they would see some denervation. Good for you.
I'm going to have to disagree with you about paraspinous muscles and bulbar symptoms, though. Even the cervical paraspinous muscles won't have a thing to do with the bulbar muscles . . . those are all cranial nerves. The paraspinous muscles were once thought to be "slam dunks" so to speak with ALS diagnosis, but that has since been disproven. More often than not, the paraspinous muscles are checked for radiculopathy.
Bottom line smilelady: you should still be hopeful about a good diagnosis.

 

[asmileaday]

Thanks to all of you. I am feeling better. DH went to visit his parents and I will share this information with him when he gets home.

I really appreciate all of the information.