How many EMG's does it take!?

[Sammantha]

Hi everyone, having a hard time sleeping..... anxiety, nervousness... I think i need to up my prescription. I saw my doc in November for my follow up, now i go back to have ANOTHER emg and physical therapy session on the fifth. Then ofcourse there will be another follow up visit. The doctor told me to ask questions next time as he was leaving. The doc walked me to the check out desk, this doc is quite the gentleman. Anyways, i am afraid to ask if i have a possible MND.. Not because i dont think i have it but because i do not want him to think i am diagnosing myself. As far as he knows, he knows i have clinical EMG weakness, brisk reflexes and clonus but thats it. He does not know that i understand everything the EMG says or that ALS/MND is on my mind. I think my anxiety is coming to ahead because of holding all of this in. This is the only place where i let anything be known. Ofcourse my mom and husband know different but thats it.. Its like that saying you are only as sick as the secrets you keep..... I cant reveal anything until i have a sure fire diagnosis whatever it is and my husband's company had another meeting with him about getting me off there insurance! Just because i see a specialist, and even though this is highly unethical and possibly illegal, my husband has to keep his job......... My job is a year to year contract and what if they decide they dont want to keep someone who is potentially sick or going to affect insurance rates.... Then i will be screwed.... I have so much anxiety and anger built up, i am completely frustrated......................I still cling to the possibility that i do not have ALS because my signs/symptoms are progressing VERY slowly. So there is that chance. How do i cope in the meantime without having a nervous breakdown! Thanks Sam

 

[Blizna]

Almost always electrophysiological changes precede any change that patients notice, also once you have weakness/twitching/atrophy caused by dying neurons, EMG should detect it if done properly. Of course it detects only LMN signs and what you describe (reflex, clonus, weakness) is UMN. Any fasciculations, atrophy?

 

[BethU]

Sam ... I don't think you should be afraid to ask the doctor about ALS, because that's one of the things an EMG is used for. And since he has encouraged you to ask questions, I'd go ahead and do so. Nothing you say to the doctor will get back to your employer or insurance company. He sounds willing to listen and respond, and I'd ask away, since he will be leaving and you don't know what kind of person you'll get next.

I hope you are documenting all the meetings your husband is being subjected to about taking you off the policy! That is outrageous.

I'm so sorry you are going through all this. Hang in there. At least, whatever it is is progressing slowly!

 

[KarenACR]

Hey Sam, If it helps any, I am in the same boat with you. I have had an MRI, nerve cond. study, EMG, and barium swallow test. I have had symptoms for months and don't know exactly what to tell clients and others. My husband knows I fear I have ALS, but I don't want to alarm other family members unnecessarily. I'm sure some people think I have started drinking because I my speech is so slurred.

Fortunately, I have appointments with two neuromuscular disease specialists this Thursday and maybe they can tell me what is going on.

Can you find an MS/ALS specialist in your area? I have to travel 100 miles to see mine, but I feel I am in much better hands than the local neurologist who told me it was probably just nerves and menopause. My speech has deteriorated signficantly since that diagnosis just 4 months ago, and my weakness and muscle twitches are unrelenting.

Keep in touch and let me know what you find out.

Karen

 

[Zaphoon]

Samantha,

If I were you, Id tell the doctor about your concerns of having symptoms that are shared with ALS and get it off your chest. If you fail to ask him, the fear of the possibility will continue to haunt and eat at you. At this stage of testing, the worst that can happen is he can tell you that it hasn't been ruled out yet but neither have a lot of other possibilities.

 

[BrianD]

I have had two EMG tests done about 3 months apart. According to doc now that I'm diagnosed, I won't be needing anymore, unless there was something unexpected (like seeing an improvement).

Not sure what you mean by "clinical EMG weakness". I didn't think EMG measured weakness directly, but measures denervation. Were your EMG results "clean", or did it show problems?

I also second the advice on asking your doctor questions.

Brian

 

[Sammantha]

My first EMG showed facic's, PSW's and fibs.........four EMG's later, the neurologist told me that the EMG did confirm that there is EMG results that prove i have weakness in my left arm due to "something" affecting my muscles. He seems to be more involved on figuring out why i have clonus as this is a definite sign of UMN. I have had brisk reflexes for a long time but they just discovered the clonus through the physical therapist, which i now know i have had for a real long time. I go to UNC neurology at Chapel Hill. It is a three hour drive and i am lucky i have such good docs so close... I have a loooooooooonnnnnnnnnggggggggg history on here. I even went to DUKE ALS clinic where they could not come up with anything other than saying it is a als like disorder. So i stopped going, they where no help. The doc just said things have to get a lot worse before they can do anything... I first was sent to UNC Rheumatology, then UNC neurology then i sent in all my tests to the Duke als clinic and they took me in. I stopped trying to figure out what was going on as i lost my job had other health issues and what not. Then my breathing was affected causing my heart to race over 160 beats at night. When i was unable to get it to go back to normal i had to go to the ER, then they set up me back up on the wheel of nowhere! I had a pulmonary function test that said my exhalation and inhalation was affected so they concurred it was respiratory muscle weakness. The heart doc said it was due to my breathing because i have a great heart. I have a great heart and good lungs, just weak muscles...... So my respiratory doc sent me back to neurology.. I had a fit because i knew what it would be like, he said that with these new results that it should be easier to make a diagnosis. He thought i should go back to where i started with neurology.. Since i have been back at UNC the doc has been wonderful. He acts like he cares and wants to help no matter what, and its sincere. Hopefully this is my last EMG as i cannot see why i would need anymore after this. My employer was great about letting me have the fifth off and did not ask any questions. Last time i drove myself alone...Everything went great but i had to pull over two hours from home and take a nap because i could not keep my eyes open. I love cruise control, if anybody has a hard time with holding down the pedal i recommend cruise control........ My husband is taking me this time, he was allowed the day off as he informed them that i was getting the last of my work done so i could switch insurances... Thanks everyone for helping... I will write again, probably on the sixth...... Happy New Year

 

[hopingforcure]

Sam,
I am so glad you are going to the Doc with your husband. I was worried about you going alone. I do think you should ask about the ALS and questions. I am so sorry, I know exactly how long you have dealt with all of this. I hate that so many of us, have such a tough road to take. Please know we will be thinking of you, and will look forward to hearing from you you. Big hugs and thoughts.

 

[crystalkk]

Sam,

I am also happy that your hubby is going with you.... Yes, I was worried the last time when you went alone.
Please ask questions, I know you have been dealing with this for a long time also....
Good luck and please keep us posted.

 

[halfin]

I'm a big fan of cruise control too. In fact I use it almost all the time I'm on the freeway, even in traffic, which is pretty unsafe.

It's strange that they cannot diagnose you. At the time I was diagnosed, I had almost no symptoms. My speech was a little slurred but really only people who knew me before could tell. And I was weak in one finger. But a few fibrillations and other bad signs on the EMG, and that's it, I had ALS. This was at UCLA neuromuscular clinic.

At the time I couldn't believe it, I thought they were smoking something. I was still running more than 10 miles a day and doing 25 push-ups at a time. I was extremely strong and fit. But now I can see they were right, I've gotten progressively worse in the 5 months since then. No more running, I'm having trouble walking. No more push-ups. My hands are weak and I'm coughing all day long because of water going down the wrong way. My speech has gotten worse and sometimes I sound like I've had a stroke.

So why could they diagnose me when I had practically no symptoms, and they can't diagnose you when you have all these things going wrong with you, and your EMG sounds as bad as mine was? One difference maybe is that my EMG got worse between May and August. Another perhaps is that you are having symptoms that point away from ALS as well as ones that point towards that disease, for instance the racing heart. Anyway I hope you get some answers soon. It's good that your progression is slow but bad that you are having progression at all.

 

[Sammantha]

Thanks Hal...... I am shocked too that they told you so early on, but i think like in your post, that i may have something pointing away from als. For one thing it took you only five months to have all those things come on.... (I am sorry for that.) For instance, my right forearm was the last place not to have any twitches or weakness. Then a year ago it started twitching, hard! They always start out big but end up looking like fine twitches, facics.. Anyways, it took a year from that for me to now have wrist/pinky and ring finger muscle wasting. My right forearm was the last thing on my body to show changes but it sure is moving fast! Well at least it was the last thing to ME, that showed changes as they always asked me if i had problems with it after doing my EMG's..... Sam