My emg test

Nikki J

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I am sorry. I don’t think it is diagnostic for ALS which is why they are repeating it. Was this person the emg doctor or someone else? Are they going to be your neurologist or were they someone who got assigned to review your results? Did they examine you? Was there a plan for anything other than another emg? I think the first emg was ordered by an ortho? So you need someone to take over your neurological care. Do you know this person’s qualifications? Were they a consultant neurologist/ neuromuscular specialist or a junior doctor?
 

Sammy88

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I'm not sure what you mean by Not diagnostic for ALS ? I thought anterior horn cell disease or motor neuron disease is all basically the same thing.

The neurologist i saw who gave me my results was a different person to whom had done the emg test. Im not actually under any neurologist due to the nhs being in a complete mess. Their staff are either on holiday or have just left so ive been told. So the neurologist I'm under now is a temporary one. With the nhs in the uk you really don't have a choice in who you see or even know their experience/expertise.

The next steps in my plan is another emg in about 6 weeks to confirm the diagnosis .

I'm not doing to good. I can't eat or sleep, I see no point.
 

Nikki J

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From what I see it doesn’t look like it meets diagnostic criteria for ALS. ALS requires a certain pattern that I don’t quite see pn emg plus a clinical exam to supports the diagnosis plus ruling out everything that could mimic it. Both anterior horn disease and MND can include other diseases besides ALS. Again the reason for a repeat would be that your emg didn’t quite meet ALS criteria. That doesn’t mean you won’t have it but that they can’t call it yet. They wouldn’t do another emg if there was abso no question. It would be easier for them to diagnose you and send you off. If it is going to be ALS it would be better to have the label and access to services. Waiting for a retest is hard. Ask your gp for help for stress if you need it. Not sleeping and especially not eating are very bad for you as you know. If you are in London can you get sent to Kings?
 

Sammy88

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Hi again, tho I live close to Kings hospital thats not the hospital I'm under. The nhs doesn't give you a choice. It's standard practice in the uk to do a second emg test for confirmation for motor neuron disease. They need to see more deterioration on the second emg test i believe.
 

Nikki J

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Repeat emgs not the experience of my UK family but whatever…. Wishing you the best
 

Sammy88

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It seems I have upset you somehow, the whatever response clearly is an indicator.

I'm just saying how things are done differently in the uk in my personal experience. I still haven't got hold of my gp. My temporary neurologist still isn't returning my calls. I definitely need some medication to help me sleep but after chasing the nhs for 9 days solid for some medication, I give up. Now in my sleepless state , I shall be putting in complaints and find my own ways to drug myself up.
 

Nikki J

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I am not upset. I feel for you. Any uncertainty at this point is really hard ALS is definitely on the table it just doesn’t look like that emg met the full criteria which would explain the repeat. As I said my UK family didn’t get the repeat they were told after the emg and other tests this is it. Maybe your clinic is different. I said whatever because there wasn’t more to say It is awful nobody is calling you back. I hope you get solid answers soon
 

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Sammy, Nikki has had huge experience with ALS as it is genetic in her family and most of them are in the UK.
You need to see your doctor, I don't see how we can help further. Only your doctors can really answer your questions and work this through with you. I feel for you that they aren't returning your calls. There are so many other ways to deal with this than having a go at members here and the undertones of 'find your own ways to drug yourself up'. You could take up all kinds of positive things.
Please don't feel the need to reply. Your best thing now is to stop pursuing MND, focus on health and make the most of life. We don't get a single day back after all.
 

Sammy88

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affected , I wasn't the one having a go first. Read the posts. As for for go live my life and stop pursuing MND. I WAS DIAGNOSED WITH MND. Thanks for the support. Delete my posts
 

Nikki J

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I feel like there has been misunderstanding on both sides here and for my part I am sorry . Repeating the emg says to us there is at least a bit of doubt on the diagnosis and to our eyes the emg doesn’t quite meet diagnostic criteria so a repeat makes sense. It looks very worrisome as were your symptoms so yes you have every reason to worry and it is horrible no answers. If that person diagnosed you they should have offered riluzole which is most definitely prescribed in the UK. I heard Professor Al Chalabi from Kings speak to its benefit a while ago. They should have at least told you how to contact the MNDA if not set things in motion. If they had a solid diagnosis and did not and are now ghosting them shame on them. Wishing you better luck next week in contacting people
 

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I do apologise for my side too.
I must have misread things as this thread has moved along. Normally if someone is diagnosed they are not posting here in this forum which is for the undiagnosed.
I hope you get some clear answers soon.
 

Sammy88

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I was offered riluzole straight after my diagnosis but I refused. I was still in shock , unable to take things in. I have since had nurses from my local hospice visit me, referred from the hospital.

I also contacted mnd connect, spoke to a lovely caring lady who got in contact with my gp to ask for medication and a refferal to Barts hospital in London who specialise in mnd/als. Unfortunately my gp refused both requests.

I apologise if I upset anyone , definitely seems like wires got crossed. On my part it felt like I was being ignored/ disbelief in my diagnosis, but now looking back maybe I was being offered some hope by Nikki J .
 

Nikki J

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I am glad they are mobilizing for you but shocked that your gp refused to send you to Barts. You have every right and need for a second opinion and refusing medication? Riluzole or something else? Either way experts made recommendations and your gp is ignoring/ refusing. That is awful
 
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