I get that a clean EMG = No ALS, but can it be another neuromuscular disease?

[ALSFighter777]

Has anyone had any knowledge of a clean EMG (given due to suspicious of ALS or something else) occurring despite the presence of a neuromuscular disease? If ALS can be crossed out, can the others, muscular dystrophy in particular, be crossed out too?

 

[trfogey]

Sounds like an excellent question for you to ask your neurologist. Please let us know what the answer is.

 

[ALSFighter777]

I had no intentions of asking my neurologist anything. I was just going to self-diagnose from this forum and hope for the best.

You see, I've got a brain disease (in addition to all this other junk going on) where I don't realize the importance of talking to a medical professional so I need people to remind me of it constantly. Thank you for doing that! Really.

I just realized I never cared to know what other knowledge people had so I could lead an informed conversation with my neurologist. I was just subconsciously trying to set myself to be reminded of what my disease makes me not realize.

 

[trfogey]

I had no intentions of asking my neurologist anything. I was just going to self-diagnose from this forum and hope for the best.

Not a good idea. Most folks that try that end up with a lot more anxiety and fear than if they had just taken their questions to their doctor to start with. Too much information, when you are dealing with the neurological diagnostic process, is usually a bad thing. Then they come here filled with panic and expect a group of well-meaning amateurs to answer their questions when they don't even know which questions they should be asking.

You see, I've got a brain disease (in addition to all this other junk going on) where I don't realize the importance of talking to a medical professional so I need people to remind me of it constantly. Thank you for doing that! Really.

You're welcome.

I just realized I never cared to know what other knowledge people had so I could lead an informed conversation with my neurologist. I was just subconsciously trying to set myself to be reminded of what my disease makes me not realize.

First of all, if you want help, lose the attitude. Nobody here owes you anything, and a snotty answer might just get you banned.

Second, you paid your neurologist for his medical advice and, apparently, you're not thrilled with what you got. It happens to a lot of people in the early stages of the neuro diagnostic process. Then they go on the Internet and read a bunch of stuff that is irrelevant to their case and scare themselves to death.

That appears to be the state you are currently in. Otherwise, why the attitude? Your doctors have all the information from your tests and the training to interpret them. We don't. All we know about you is that you appear to have a clean EMG, a non-elevated CPK, and there's a question whether you have muscle atrophy. Not giving us much to work with there, champ.

Third, you've asked two very narrow technical questions here and in in your other thread that address things that we don't see here much. When that happens, the usual advice is to tell the person asking the question to go to their doctor. To my knowledge, we don't have any neurologists posting here, and this an ALS/MND oriented board and not an "All neurological diseases" board. Your questions are for experts, not amateurs. If you want our help, you might try getting in the same ball park.

Care to drop the Twenty Questions approach and get to what's really bothering you?

 

[olly]

ok seouless,i'll answer your question.
besides als an emg can help in diognosing other neuromuscular deseases.
in particular............mythesia gravis ,dystrophy and myopathies.
in this link at the bottom it gives a whole list.
hope it helps.
Electromyography - Wikipedia, the free encyclopedia

 

[rose]

Caroline,

That was a very helpful link.

Souless,

There are neuromuscular diseases which don't show up on EMG. Some conditions people have may not even have names put to them. The good thing about a clean EMG, is that it gives a better prognosis. MNDs have been found to be always progressive, although there is a great variance in what the speed is from person to person.

I don't know specifically if Muscular Dystrophy is ruled out too, but the article Olly linked you to might say.

I see you're in Baltimore. I don't know if you're going to Johns Hopkins or not. They're awesome. I used to drive about 3.5 hours just to be seen there, and it was well worth it. (I live closer now)

Good luck to you.

 

[ALSFighter777]

Hey Rose,

Thanks for the reply! I actually have an appointment at Hopkins on June 4th. Hopefully I can get in sooner somehow.

I am seeing my neurologist on Thursday.

I am wondering if it could perhaps be something autoimmune. My guess is there are a lot of people on here who are far better researched than me and could point me in the right direction. This could be especially helpful if I have something very rare, something that even a great doctor could overlook.

 

[Madison1943]

Gee whiz, Seouless, if I had a clean EMG done by a neurologist, I'd be giddy with delight and stay away from these dreadful ALS forums. You couldn"t pay me to visit these sites. I'd be outside doing cartwheels and driving my car with the top down, eating subs and drinking gin and tonics. You couldn't pay me to even say the words amyotrophic lateral sclerosis. If you have symptoms of some disease, those doctors at JH will be delighted to give you the news. But without a diagnosed, be happy.

 

[ALSFighter777]

Madison,

Thanks for the cheerful outlook. I'm sure you can understand the stress behind all of this. My internist has been pushing an investigation of a neuromuscular disease. Specifically, he is aiming in the direction of myotonic dystrophy (despite a lack of myotonia, positive EMG, and bloodwork) and a neuromuscular disease in general.

My endocrinologist and neurologist rejected the possibility of a neuromuscular disease. My neurologist did so based on a physical examination, and I am seeing him Thursday to go over the EMG, which I have read.

My internist is pushing for me to go to Hopkins to pursue this neuromuscular thing.

I guess rationally, two MDs including one in the specific field trumps a general doctor, even if the general doctor went to a better Med School.

All I know is that my symptoms seem to be getting worse. My forearms, wrists, hands, and lower legs are killing me.

I'm sure like everyone here who doesn't have a diagnosed, I just want answers, and the more research I do on my part, the better position I will be in, especially if I have something rare.

 

[Zaphoon]

A clean EMG would rule out ALS but not PLS.

You have not been specific regarding symptoms for any of us to venture a guess as to what may be going on with you.

The good folks at Hopkins will be able to unravel things for you.

Good luck.

 

[ALSFighter777]

A clean EMG would rule out ALS but not PLS.

You have not been specific regarding symptoms for any of us to venture a guess as to what may be going on with you.

The good folks at Hopkins will be able to unravel things for you.

Good luck.

You're right. I will make a general post with my symptoms and see if anyone can provide some insight from their own research/experience.

 

[rose]

seoulless,

I saw a Alan Baer, M.D., Director, Rheumatologist, initially at Hopkins (at Good Samaritan Hospital) I came into the Hopkins system through rheumatology, I think because my referring doctor in the New York area was a rheumatologist. Then, after seeing him, (Dr Baer) he referred to the neuromuscular division, who, for better or worse, decided to keep me for their own.

If rheumatological reasons have not been explored, they should be. However, be prepared that no answers come quickly (usually) when it comes to the autoimmune.

Even if you have to wait for your scheduled appt to get in to Johns Hopkins, once you're in the system, they will take good care of you. Their efficiency and compassion never fails to amaze me.

Madison,

I was driving my Mini convertable with the top down just today, with Ernie the Schnoodle Dog strapped in (but hanging his head and shoulders out "his" side). I'm not going to be able to drive this car much longer due to its "tight" steering, so, yes, that made today even more memorable. Temperatures were in the 70's and nary a cloud in the sky... However, not having a diagnosis is hard. The unknown is difficult. During what can be a long process, I'm glad we have this section of the forum, so those who are facing the unknown to have a place to ask their questions. It is frustrating for us, who participate in the forum, when we get anxious posters who either have not even visited a doctor, or have been to one, but refuse to believe that they don't have ALS. When these people post, I tend to just look the other way. The best thing about this strategy (IMHO) is that not only do I not get annoyed, but, the fewer responses, the less active a thread continues to be, and, if no one responds, it just works its way down the pile, to where it is rarely even read.

 

[limegreenphysicist]

Seoulles,

Please don't let the obsession with diagnosis take over your life. I have lost so much happiness in my life over the last two months because I let all of my symptoms and my obsession with self diagnosis take over my life. I have atrophy, fascis, and weakness..other crazy stuff happening but I have 3 clean emgs even on my tongue of which has shrunk. So there are endless possibilities to what I could have going on with this beat and battered body but its not the insidious and I just refuse to let it take over my life anymore.

My doctor told me the same thing Zyphoon reiterated on another thread. Twitches are not likely to just miraculously become pathological if they are not now. I have LMN symptoms but clean emg and that mean no monster. I say this only because it took over my life. I have Lyme's Disease..a nasty case of it..there is so many things that could be wrong and you will be in good hands at Hopkins. The best thing to do is to stay away from the internet and this sight. So many people come on here and dig through piles of posts and read between lines to scare themselves silly.

I just don't want anyone with a clean EMG to fall into that vicious cycle when there is life out there to be lived. I know undiagnosed have bad symptoms but I just pretend nothing is wrong..I walked around all day a Six Flags yesterday lol...I gave the old jello leg the finger and enjoyed my day. Even though with hyperflexia those rollercoasters where even more of a ride

Happy Resurrection Day everyone!

Kelly

 

[ALSFighter777]

Kelly,

You said you have Lyme, so wouldn't that be the cause of your symptoms?

 

[ALSFighter777]

Kelly,

By the way, if your Lyme disease cannot explain your musculoskelital symptoms and you have a clean EMG, maybe you should consider having your hormones looked at.

My endocrinologist is convinced that my distal muscle weakness, pain, and potential atrophy is the result of hormonal problems. In my case, it is low LH and FSH. The low LH, in turn, caused an underproduction of testosterone.

My internist, on the other hand, is pushing for a neuromuscular investigation.