Status
Not open for further replies.

Uriel

Active member
Joined
Jun 20, 2009
Messages
33
Reason
Other
Country
US
State
Ohio
City
Cleveland
I went to see my Neuro for a second time, so that he could explain the results of the EMG to me in person.
He gave me a copy of the Result impression. I goes like this.

"Based on extensive study of the left leg, arm and thoracic paraspinal muscles, there is no EMG evidence of a diffuse motor axon loss process, such as motor neuron disease. Fasciculation potentials are identified in distal leg and foot muscles, with outaccompanying evidence of active or chronic motor axon loss. A prominent cramp discharge was identified in the posterior tibialis muscle.

Kerry H Levin, MD "

So my doctor said that idf the fasciculations were do to ALS, there would have been some type of denervation going on that they could see.

The actually result of the test was classified as abnormal (maybe because of the fasciculations?)
My doctor told me that he is 95 percent sure there is no disease going on. Can I garantee it? he said no. But right now there is no sign of any disease that we can see.

He said maybe a follow up EMG could be done..but not until a few months later, because he said things don't move that fast. he said maybe in another 3 to 6 months we can do another EMG if I want to.

What do you guys think?
worth seeking a second opinion?
You'd think I want to be diagnose with this thing and I wont stop until I am. I keep telling myself that a Neurologist from the Cleveland Clinic told me not to worry about, but then I think what if the EMG was done too early (about 2 months from when the fasciculations started) what is they missed something.
Thank you guys for listening. I feel pretty silly worrying about this the way I am. I just can't help thinking about ti. specially when I know my body is doing all kinds of things that never did before.

Again thank you all for your kind words of encouragement.

Blessings

Uriel
 
Uriel,

I vote no for another opinion (but what does it matter what I think?). For many, the neuro at Cleveland Clinic would be THE opinion that they seek, even it it is not an ALS center (is it?). When he said "things don't move that fast" he was not referring to ALS, as you have read here and elsewhere I am sure, if you are having LMN signs, it would show on the EMG. It didn't show, so what ever is bothering you is not stemming from ALS. It could be some other disease process, if indeed it is a disease, that does take time to show up. I am at 2+ years of symptoms and understand your frustration (x12) at not having an explanation/documentation for your issues. I describe this time as one of waiting for THE symptom to show up that will make what ever is bothering me declare itself. If I were you I would bind my time until the follow-up. Go and have the second EMG then and perhaps you will learn more information at that time. Not easy, but you actually do get better at the waiting the longer you have to do it.

Take care,

Lydia
 
Thanks

Well is not actually the ALS center however when I tried to schedule to see a doctor at their ALS center (its in the same building) they said to see my neurologist first and we would go from there. The doctor that perform my EMG I think works in partnership with the ALS clinic and my neuro told me they carefully looked for specific signs of ALS. I just wondered why he could not rule it out 100 percent..instead said "is it possible to have an EMG in one year and have it show something? sure. but right now there is no sign of it and I think if it was there it would show up."

thank you for your reply I hope all goes well with you also.

Blessings

uriel
 
Uriel-



I have also gone to Cleveland Clinic. I had an EMG done in Jan, about 5 months after my global facics started. The EMG was clean. I had another EMG done at the very END of May (almost 6 months later) at OSU- still clean (except fasics). Cleveland Clinic has an ALS division and has some of the top doctors in the country. The EMG techs and neuro's are very familiar with ALS. I have many other symptoms beyond just twitching as well. After my EMG in January I had the same concerns and that is why I had a follow up EMG which I was almost sure would come out dirty and was CLEAN again. I don’t think you need a second opinion BUT I would do a follow up in 5-6 months because I know that it is the only thing that will ease your mind and if you go and get another now you will just think once again "is it to soon". Also- Wright told me that if you have muscle twitching caused by ALS, then it will show major issues on the EMG. I also asked both my neuros the same question and they both said that is true. My neuro also told me he was 99% sure I didn’t have ALS- it was later explained to me by a friend of mine that is a Dr. that they really wont tell you "I 100% guarantee" you don’t have ALS because of legal liability. If you do decide to get a second opinion, you should go to a neuromuscular specialist at OSU. Trust me, I understand mentally what you are going through. Its hard to believe the neuro when they tell you that you don’t have ALS but they cant tell you what you do have. Its rough, just take it one day at a time and believe in your EMG. Take care-

CB1977
 
thank you

thank you for your advice. I means alot coming from someone that has been there.
I will probably wait another few months and follow up with an EMG at the cleveland clinic.

I keep telling myself that.. this doctor is probably one of the best in the country and that this guys KNOW what they are doing..and then the thoughts just come back and I can't shake them.
Thank you again for taking the time to reply.
hope all goes well with you my friend.

blessings

uriel
 
I went to see my Neuro for a second time, so that he could explain the results of the EMG to me in person.
He gave me a copy of the Result impression. I goes like this.

"Based on extensive study of the left leg, arm and thoracic paraspinal muscles, there is no EMG evidence of a diffuse motor axon loss process, such as motor neuron disease. Fasciculation potentials are identified in distal leg and foot muscles, with outaccompanying evidence of active or chronic motor axon loss. A prominent cramp discharge was identified in the posterior tibialis muscle.

Kerry H Levin, MD "

So my doctor said that idf the fasciculations were do to ALS, there would have been some type of denervation going on that they could see.

The actually result of the test was classified as abnormal (maybe because of the fasciculations?)
My doctor told me that he is 95 percent sure there is no disease going on. Can I garantee it? he said no. But right now there is no sign of any disease that we can see.

He said maybe a follow up EMG could be done..but not until a few months later, because he said things don't move that fast. he said maybe in another 3 to 6 months we can do another EMG if I want to.

What do you guys think?
worth seeking a second opinion?
You'd think I want to be diagnose with this thing and I wont stop until I am. I keep telling myself that a Neurologist from the Cleveland Clinic told me not to worry about, but then I think what if the EMG was done too early (about 2 months from when the fasciculations started) what is they missed something.
Thank you guys for listening. I feel pretty silly worrying about this the way I am. I just can't help thinking about ti. specially when I know my body is doing all kinds of things that never did before.

Again thank you all for your kind words of encouragement.

Blessings

Uriel

I usually keep quiet, but let me try to explain as it was explained to me. (Maybe someone like wright could chime in here too).

In ALS, Motor Neurons die. This cuases denervation of the muscle and loss of strength. Nerves that are still OK for the time being branch out and re-innervate the muscle. The reinnervation causes fasciculations. If you are having fasciculations due to ALS, the EMG would pick up BOTH denervation and reinnervation.

If the EMG is only picking up fascics with no denervation, it is not from ALS - end of story. There is no such thing as "too soon" in this scenario.

Go have a party.
 
What worriedsick just said is exactly what both of my neuro's and wright have also told me.
 
I would trust what this neuro has told you and not bother with a second opinion. It has been my experience that if a neurologist suspects something serious is afoot, he/she will recommend you get a second opinion.

I would save your time and money for now.

Zaphoon
 
thanks

thank you for your response and taking the time to reply to me. You have no idea how everything you guys said has helped.

Thank you again

blessings

Uriel
 
Hey guys

i called my Neurologist to ask him what the Abnormal meant in my EMG report. They told me it had to do with the prominent cramp discharge that was picked up by the EMG. I asked him if this was something to worry about and the nurse told no there could have been a cramp due to a thousand resons.

Anyway I searched the Doctor that did my EMG career profile as well as my Neurologist. The one that did my EMG was voted Doctor of the Year twice in the USA and is the director on the board of neurologist and specializes in electromyogram technology (EMG?) My actual Neurologist has written 2 books and hundreds of papers on neurology. Both are experts in Neuromuscular movement disease.

Anyway I'm sure this guys Know what they are doing and if they say now there is no sign of a disease, I guess there is no sign of the disease. Who knows what the future will bring. But for now I will try to at least for a time forget about this and try to not pay atention to the crazy things my body is doing:?::?:

Thanks everyone

Blessings

Uriel
 
Status
Not open for further replies.
Back
Top