Back to neuromuscular

BFS Online Support Group

Moderators: JohnV, Arron, garym

Back to neuromuscular

Postby LKP1231 on October 21st, 2014, 6:13 am

I went back yesterday to discuss anything I was unsure of. The dr was patient. He explained again why just bc my emg wasn't normal per se, how common what showed was for radicular back disease. Repeated all reflex and strength tests. He stated several times he does not see this to be ***. He will follow up with me in January. He said I must get my anxiety under control.
So I guess I must have faith. Btw he said he would never have even done an emg on me.
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Back to neuromuscular

Postby Yuliasir on October 21st, 2014, 7:00 am

I think you are very lucky patient to have a doctor like that one.
Hope you really can have a solid faith in what he told you.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Back to neuromuscular

Postby LKP1231 on October 21st, 2014, 7:52 am

Well I do feel that if he was unsure in any way he would send me to an *** specialist. He is a neuromuscular specialist, at one point he was even head of that dept in one of the big hospitals here and I think he did residency in neuromuscular. So altho he doesn't specialize in that particular disease, certainly he has experience with it during his 25 years in practice. There were still a couple of comments he made that made me unsure of his knowledge of it but I'm trying to put them out of my head, reminding myself that I surely don't know more than he does.
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Back to neuromuscular

Postby RIno468 on October 21st, 2014, 10:18 am

You really need to be off this forum like you had said before.. you are just feeding your anxiety and it is ALWAYS hungry.

You do not have ALS -- maybe something else but definitely NOT ALS.
EMG would have showed it and your doctors who have trained for years and years specificially for neurological issues have told you nothing is wrong.

You had someone you loved dearly pass from ALS -- and you are now transferring that fear onto yourself.

Your loved one who died from ALS would not want you essentially stop your life because you fear a disease you do not have.

I know its hard but you really need to get a grip, you dont have ALS, that wont kill you, but the fear of having it just might do the trick.

Seek some help and medication, and if you already have, you need to really follow your therapist / psychiatrist instructions.
RIno468
Selfless giver of time
Selfless giver of time
 
Posts: 145
Joined: September 3rd, 2014, 9:47 am

Re: Back to neuromuscular

Postby LKP1231 on October 21st, 2014, 11:26 am

Yes. I just came from my therapist and I am trying out a new med tonight bc that last one made me sick. Both the neuro and the therapist said one of the first and best things I should do is stop reading the internet, this site included. Misinterpretations come from everywhere.
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Back to neuromuscular

Postby LKP1231 on October 21st, 2014, 3:04 pm

And just as an aside, I was not blessed with a clean emg like the vast majority of folks here, so it's that much harder for me since some of the findings could be related to that if it isn't actually from my back (which is a strong theory right now, but certainly not the same as no findings at all). I haven't detailed the results here (they actually weren't fascis as the first neuro stated). I'm afraid of input that might scare me more. This is why I'm trying to trust the neuromuscular doctor's words in spite of what showed.
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Back to neuromuscular

Postby MarioMangler on October 21st, 2014, 3:26 pm

There are a ton of people here who had what you would call "dirty" EMGs. You are far from the only one. Yet it really doesn't mean anything in the big picture, people can have EMG abnormalities for all sorts of reasons.

At this point, you have more than one doctor telling you what the problem is. The only person disputing the doctors is you. As people in this thread have already said, at this point it is really up to you how you are going to approach this thing. You can approach it the productive way or you can approach it the non productive way. The choice is all yours. It has always been yours.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: Back to neuromuscular

Postby LKP1231 on October 21st, 2014, 3:29 pm

Thank you. I'm really trying but it's taking a lot. I'm hoping as the days go on it gets easier.
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Back to neuromuscular

Postby leaflea on October 21st, 2014, 7:18 pm

Linda,

Challenge yourself. Stay off the internet until your next therapy appointment. You have absolutely nothing to lose. Go and get busy, find an exciting new hobby to immerse yourself. See you in a week or two. It really helps. Promise.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Back to neuromuscular

Postby LKP1231 on October 21st, 2014, 8:17 pm

You're so right, I need to try
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Back to neuromuscular

Postby German2 on October 21st, 2014, 11:29 pm

Dear Linda,

my emg was also not clean. And I suspected me to do more limbs if they find abnormalities in one limb. But they did no further examination. On Monday I was at a neuromuscular specialist, too. She was conviced without doing the emg that there is nothing. And she was sure not to find anything in the emg. But then she did...But she was not concerned and did not a whole body session but sticked to 2 muscles. I know how this feels. And for me it is that I suspect the doctores to find more, if they would look. But they don't do me a full body EMG.
I freaked out completely that night. I wanted to organize me one, but now I am trying to get more distance to those "measured figures". Get this distance, it takes some time. But maybe you will get convidence to your body back...
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Back to neuromuscular

Postby LKP1231 on October 22nd, 2014, 6:03 am

German you do have some explanations for your issues and the specialist said no ***. The only thing my drs came up with is my back and I also did not have enough needles to prove that. They are supposed to do your back and he did not. So to me it's just a guess. The neuromuscular said I don't have ***. So hard to believe. Explanations still not clear to me why it's not. But I'm trying to move on with therapy and meds. The motor abnormalities are scary. I feel like if not for that I wouldn't be so scared. The first doc tried to tell me they were fascics but that's not what they were. I don't know why he said that.
I was looking at your older posts, didn't you have a full emg early on? Certainly something would have shown in the affected area by now.
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Back to neuromuscular

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 5 guests