My emg test

[Sammy88]

Hi all, I have a question about the emg test. I had one yesterday they was only supposed to do my legs. Back history fascinations in both legs for a year non stop, followed by severe cramps and then weakness and foot drop. For 6 months I’ve had great difficulty walking. It’s like I’ve forgotten how to walk. My legs feel stiff but weak. 2 weeks ago I developed foot drop in the other foot to. At the start of the emg test the lady first did the electric shock part. Then informed me I shall be having the needles everywhere. She changed to a bigger longer needle halfway through which hurt much more. She asked me to stick my tongue out also checked my whole body making me take my clothes off , all seemed different to the exam I was expecting. At the end she told me 98 percent sure she’s knows what wrong with me, has seen a couple of people with my condition and I need to book an appointment with the doctor who requested the emg asap. She then told me I have weakness in my left arm to which I knew nothing about and stated she will see me soon which seems strange . She ended with if you have any further weaknesses in your arms to call her. I asked her straight do I have ALS she totally refused to reply. So my question is what’s the bigger needles for ? I can’t find that information anywhere online. Anyone else had this experience with an emg test and of course does this sound like the ALS, thank you for reading .

 

[Nikki J]

the needle size doesn’t tell you anything. They don’t need different needles for different diseases. For whatever reason she apparently thought she would get better information with a different size presumably due to your anatomy. The only time anyone changed needles for me was smaller for a facial emg

your symptoms are worrisome, yes. One thing though if it was the ncs ( shocks) result that caused a change of plan to a more extensive emg that sounds like something else because the ncs is usually normal in emg. Call your neurologist. Since she apparently found something I expect she communicated results quickly. Also I would have thought someone who does emgs all the time would have seen more than a couple of cases of ALS. Wondering if something like mmn or cidp but that is pure speculation. Let us know

 

[Sammy88]

Thank you for your quick reply. I have an appointment booked for Sunday with my orthopaedic surgeon who referred me for an emg. It’s a stressful time waiting.

 

[Sammy88]

At my appointment on Sunday my emg test results wasn't sent over unbelievable. The orthopaedics surgeon said my spine mri scans are all good so discharged me from his clinic but put in a referral to see a neurologist. My walking is worst now due to lack of balance. My right hand cramps now after a pick up a cup. I'm stuck in the house unable to walk. I'm really struggling now this weakness is rather scary. I spend my days trying to research diseases/conditions that point my weakness and symptoms away from als but unfortunately nothing fits . I keep ringing the hospital chasing my results but no one helps.

 

[Nikki J]

Can your gp help? They should be able to get your test results - I would have thought they would have been sent them but even if not the hospital should respond to their request

 

[Sammy88]

Thank you for your reply. I have asked my gp for some help now. My daughter got a reply from her complaint to pals at the hospital. They replied I need another emg test in 3 to 6 months. They are bluntly refusing to give me my results of the emg. I'm totally shocked.

 

[Nikki J]

If they are recommending a repeat it apparently was not diagnostic of anything. Both your gp and the ordering doctor should have copies of the report and be able to share with you and explain. Keep calling both and nagging

 

[affected]

Definitely sounds like there was nothing of note. You definitely have full rights to the results tho, I hope your GP can assist.

 

[Nikki J]

It isn’t clear to me how significant it was or wasn’t. If it had been a slam dunk for ALS or anything else they wouldn’t have said repeat but if it was normal they wouldn’t have either. It is terrible that the ordering doctor didn’t communicate results even if it was the ortho who is handing off to a neuro

 

[Sammy88]

I thought a follow-up emg test is to confirm and track the progress in als patients. I'm trying everything to receive my emg results. Pals at the hospital now say they have sent the results to my gp surgery but alas still no results. Probably lying to get me off the phone. I have lost 12 pounds in weight in 7 days with this stress. I'm not worrying for the sake of worrying. I can't walk on my tip toes or heels. The fasciculations in both my thighs are strong, visible for a year now. Foot drop, cramps in legs and hands. Blood work normal, mri scans normal. This week my mouth keeps going dry with fasciculations above my lips but might be the stress . Sorry to be a pain , I just want to know now.

 

[Nikki J]

No once you are diagnosed they don’t do emgs again unless the diagnosis is called into question or for research my sister had exactly one. It was ALS. Done. I had more but purely for research

 

[affected]

Maybe book an appointment with your GP and sit down and talk it through until you get the results.
I've truly not heard of an EMG that shows ALS being withheld and the person told nothing.
the main reasons I have seen for a follow up EMG are either there is not enough showing to say for sure ALS, or the person is so worried they book a follow up EMG.

We can't guess at any of that, and it seems that phone calls are not enough for you to get the answers you deserve.
Please let us know.

 

[Sammy88]

Thank you Nikki and affected for your replies. My daughter finally managed to get through to someone at the hospital after complaining and threatening to sit at the hospital till she has the results. The hospital called me soon after with an appointment in person at the hospital tomorrow. No sleep tonight for me but at least I will finally know.

 

[Nikki J]

Good luck. Please let us know. If they will give you a copy it is good to have for your own records. Make sure they explain what they saw, what it means, what is still on the diagnostic table and why they are going to repeat it. It is easy to get overwhelmed and then wish you had asked something

 

[Sammy88]

Hi again, I'm in a bit of a state, the neurologist said I have motor neuron disease but wants to do another emg test to make certain even tho it has a 98 percent accuracy. To be fair I switched off went numb. The neurologist refused to give me my results on paper but agreed to me taking a screenshot of the results from her computer. Here is the results I took, I have no idea what it means and would love your input.