Advice for EMG and Appointment

[Psychstudent92]

Hi everyone,
Firstly I just want to say I admire every person on here, the support you give to others is just amazing and so selfless especially with everything you have to worry about yourselves.

I have been a member of the forum for some time but have restrained from setting up a thread as I really don’t want to waste anyone’s time.

I’m going to keep my story as short as possible, basically my symptoms started just around Christmas it was severe muscle pain in left arm followed shortly by weakness/fatigue (perceived, not complete loss of use but a noticeable difference to before ) and atrophy shortly after noticing loss of muscle loss in arm I noticed my left shoulder was getting bony any getting harder to lift, within weeks I was getting twitches (on left side/ not constant). I also noticed a strange cramping sensation of tongue and throat and easily tiring of younger when eating or brushing teeth.

After a few doctors visits I was referred to a neurologist when they were concerned with my reflexes and atrophy, the neurologist confirmed atrophy of shoulder and also noticed tongue twitches which I had not noticed myself. She asked that I come back the next day for second opinion, second neurologist confirmed atrophy and said wasn’t too concerned about tongue movements as didn’t happen when at rest (which is great) however he did say, could be motor neuron related which was a slap in the face.

I was sent for extensive blood work 5/6 weeks ago (which I’m assuming was clear as I didn’t hear anything back). I then received an appointment for brain and neck MRI which I had 2 weeks ago (no results yet), I have also received an appointment for NCS and EMG which is for Monday 9th with the same neurologist, I’m assuming she’s giving all results then.

Anyway what has brought me here is basically google searches and worrying about worse case scenarios, I know this is irritating to some on here which I completely understand. I haven't mentioned all symptoms or progression as I feel I have gone way over what I wanted to on this thread but I have just been very worried and at a loss of what’s going on with me as all came out of no where.

I was wondering does anyone have any suggestions on the type of questions I should be asking at this appointment on Monday? And can I ask for a copy of all results? I should mention I am on a free public healthcare so it’s very difficult to get these types of appointments in the first place and I want to make the most of it. I really appreciate you taking time to read this and respect any of your opinions

 

[KarenNWendyn]

Please read this if you have not already done so

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We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

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Google searches and imagining worse case scenarios are not doing anything good for your mental health, Psychstudent.

You’re seeing a neurologist. I would go to the appointment with an open mind and tell the doctor your symptoms. A good doctor will guide you through the history. Just answer the questions truthfully and to the best of your ability. The doctor will then examine you and do the tests they feel are indicated.

You can ask the doctor “What’s wrong with me”. It’s best not to ask if they think you have ALS. They’re not going to hide that from you. You could also make a list of any questions you have before the appointment.

 

[Psychstudent92]

Thank you for your reply Karen, I really appreciate it. I understand I have not been doing myself any favours with googling things and linking symptoms which can be done with a lot of illnesses and not just ALS.

I am embarrassed for letting myself for think like that and focusing on symptoms that point to rather than everything that points away or to something else, it’s just hard once the thought is in your head and when the doc mentioned motor neuron I guess I just assumed the worse and got carried away. You all seem so knowledgeable so thought it would be best to ask opinion, which proved right.

I take all of your advice, list of questions is a good idea as I tend to blank at appointments. I apologise for wasting time but thank you sincerely for taking the time to respond to me

 

[lgelb]

Yes, always get [and keep! make extras for offices that need them] a copy (I would say this to anyone) of all test results, films, and reports. It is just common sense since even electronic records are not all tied in, and things get lost/stuck in the system.

 

[Psychstudent92]

Hi thank you so much for replying to that question. It’s something I would have never thought to do until I seen others on here doing it, I didn’t think they would give results like that I had always assumed it was just for doctors use.

Thanks again for the advice.

 

[Psychstudent92]

I had nerve conduction and EMG today, the doctor who did them was not the neurologist who I had seen previously. That’s who I was expecting as I thought she would have MRI and blood results too, the doctor today said she was probably waiting to get all tests done to examine everything together.

During testing he kept asking what I thought I was or was I concerned about anything, I just told him I was concerned I was losing muscle and finding it harder to do things. I took the advice and did not mention ALS. During EMG he asked was I feeling any twitches at all, I said yes.

When I asked did everything seem normal after his testing he said he couldn’t say that had to go over results and I may be called back for more. I didn’t ask for copy as I assume I will have to get them from the neurologist. It seems a bit all over the place, is this the norm? I assumed they could tell you there and then with EMG results.

Again sorry to disturb, there’s no pressure to reply I’m just a bit concerned with how today went, I thought it was more straight forward.

 

[Nikki J]

If it was not your neurologist it is very common that they will not give results no matter what. Do not read anything into it as it may be the protocol not to give results and to say the bit about call back.

 

[Psychstudent92]

I understand, Thank you Nikki. I really appreciate taking time to respond.

 

[Kristina1]

what kind of doctor did your emg? When I had mine, "my" neuro didn't do it, but she had arranged for a neuromuscular collegue to do it. That doctor gave me a MND (unspecified) diagnosis on the spot and referred me to the ALS Clinic where, after thorough eval, I was diagnosed with ALS.

I have heard this same thing (prelim dx on the spot after emg) from a number of other PALS, so it may be positive that you weren't given any results. While NCS can be done by a tech, only an MD can do the needle EMG. As MDs, they are allowed to give you the results without a wait. That the doctor chose to just have you follow up with your neuro makes me think there was nothing serious going on that would necessitate immediate response or intervention.

Good luck!

 

[KimT]

At Mayo, a different neurologist does the EMG. First, a technician does the nerve conduction portion, then a neuro who does nothing but EMGs all day long does the EMG. They sometimes ask questions, sometimes not. They NEVER tell you what it looks like or what it doesn't.

At University of Florida, the ALS neuro does his/her own EMGs and will disclose more to you during the actual exam....at least they did with me.

At Hopkins, a different doctor does the EMGs but he was quite talkative but maybe that was because it was a second opinion.

So, it's different everywhere.

Don't read anything into it one way or another.

 

[Psychstudent92]

Hi Kristina,

I wasn’t sure what type of doctor he was but I just googled him there and he came up on the Beaumont hospital page (where I attended in Ireland) as clinical neurophysiology as his area of clinical practice. So I assume that means he’s also a neurologist does it? Sorry if that sounds stupid. He done the nerve conduction and also EMG straight after.

Ok so your saying if anything it could be a positive sign that he didn’t give the results? That’s great, thank you very much for your response and explaining that, I am still patiently waiting for all results! As you say I’m sure if there was anything serious I would have heard something by now.
Thank you again

 

[Psychstudent92]

Hi Kim,
Thank you for sharing your experience and explaining it to me. I was unsure of the process and assumed they automatically give you results there and then after tests!

I will keep all that information In mind, sounds like best thing I can do is wait until I get the results back before assuming or reading into anything.

Thank you so much for that!

 

[Nikki J]

A neurophysiologist is a specialist in emgs. you can be confident in this person’s expertise

 

[Psychstudent92]

Thanks Nikki, of course I will be confident with their opinion when I get the results just wish he could of gave them the same day but It’s looking good so far going by all of your opinions so thank you it makes the wait a lot easier