Going through diagnosis... I need people to talk to...

[StuartEE]

If you had all upper motor neuron findings, PLS would have to be ruled out but your ability to walk for that length of time gives me the impression you don't have spasticity.

The physical examination I had on my first neurologist appointment, he did say I had tightness (which I presume is spasticity) in my left wrist and leg. He basically grabbed both arms by the wrist and shook them so my wrists would flop about. Is that enough for clinical diagnosis of spasticity?

Is it possible that your doctor already shared this EMG with the neuromuscular doc? Because, I'd be surprised if a neuromuscular doctor said ALS is on the table unless there is a lot more going on with your clinical exam and, even then, the EMG doesn't support a diagnosis.

When I saw the conclusion was quite confused. I have a friend who is a doctor in a hospital and she's told me when any scans or tests are reviewed they aren't told what to look for to avoid bias and to not miss any other findings. They basically report back what their data says.

Because what my neurologist said the night before (he suspects MND), I was on the verge of a panic attack all day. Breathing difficulty, hot sweats, dizziness typical panic attack.

At the EMG appointment the doctor started explaining what would happen. I simply said I had one about 6 years ago. He asked why and I said I developed twitching after a tick bite.

During the test I was on the verge of a panic attack again. Feeling hot, dizzy, nauseous, breathing deeply etc. During each test I would hold my composure as much as possible. In between the tests I would take deep breaths and turn over the pillow I was given to rest my arm because the other side was cold. Holding the cold pillow against my body helped cool me down.

when i did this the doctor looked at me in disgust as said something like "im trying my best. I'm just trying to do a good job"

I then spent the 2nd half of the test trying to appease him and justify my actions. During that, I mentioned im worried because what my Neurologist had told me the evening before.

His conclusion could be based on what I said during the test or my neurologist told him what the test was for. I don't think my neurologist did tell him though.

 

[Nikki J]

Your situation is obviously stressful and confusing. I don’t think we can say much to help at this point. An appointment with an MND Centre where they are experts is what you need to get a proper exam and perhaps a repeat emg so they can tell you what this is or is not

 

[StuartEE]

A question about EMG if people don't mind.

I've heard the phrase denervation and reinnervations.

This is my understanding.
Reinnervations are near by nerves trying to reconnect to muscle fibers who's nerves have died. This is detectable in the EMG.

Denervation, is the detecting the muscle wasting. On an EMG that is usually described as a Fibrillation not a fisctulation?

 

[Bestfriends14]

May I ask what else you are seeking even though this thread has had 47 posts? You keep asking about what makes an EMG, even though you have had this explained to you time and again over the past nearly decade.

For your own mental well-being, perhaps you should seek help from a professional who can guide you to get past this unhealthy, obsessive, and unfounded fear of a disease you don't have.

Any further questions really need to be brought to your GP. Print all of your posts between 7 years ago and today, so that you can get the help your are desperately needing.

Good luck.

 

[StuartEE]

@Bestfriends14

This is my coping mechanism.

I like to understand what these medical terms mean. Understand how doctors are coming to their conclusions.

Questioning why lack of "reinnervations" could be a good thing.

My neurologist has said it is most probably MND/ALS. But that is not his specialty. He specialises in MS.

I've seen people on here say it takes years to diagnose and yet he has said this with 1 clinical examination, 1 MRI and 1 EMG.

I am looking for every little crumb of hope, any slight sign of medical doubt; so I can clinging on to it for as long as I can.

This is what I need to do to cope.
This is my way of not falling apart.

I have heeded you advice and every moment I can, I'm spending with friends and family. But I also need to to this.

Thank you for reading.

 

[rmt]

Stuart, you are asking people with ALS and their caregivers to hold your hand and make you feel better. Think about that.

You have significant health anxiety. That is something you can get treated. You need to see a professional, not a bunch of non-medical people on the internet. Health anxiety is a real and debilitating issue. You need to get help so it doesn't completely ruin your life.

Ask your neurologist WHY he thinks it is ALS. Considering you have no symptoms or tests pointing to ALS, I'd be curious to hear his reasoning. Maybe it was a typo and he meant to say it your results do NOT point to ALS. Either way, he is your doctor and he is the one you should be talking to about your test results and what they mean.

 

[Nikki J]

I am sorry we do not have the resources to hold your hand here.

emgs are very complicated. I will try to explain a little more but then ask you to step back and address any more questions to your doctor. Fibrillations and psws are signs of acute denervation. Even when we see those those alone do not paint a picture of ALS. An ALS emg has abnormalities across the page because it needs to show acute and chronic changes across multiple muscle areas

all your emg showed were fasciculation potentials. I already explained that these may be benign. Their morphology was not characterized in the report. But even if they didn’t look benign your emg did not have the other characteristics needed. even if you had had fibs in place of fps it would not be a diagnostic als emg

as I said before since these non mnd people have raised this issue you need to go to someone who knows mnd and let them examine you. Do not be surprised if they repeat the emg.

we really wish you well. When you see the specialist please let us know the result. Good luck

 

[StuartEE]

I would like apologise to anyone I may have upset, this was not my intention.

I'd like to thank everyone who has taken time to reply.

Many thanks to you all,
Stuart.

 

[StuartEE]

Yesterday I had my Spinal Tap.

So far I have managed to ward off the dreaded headache. Besides a occasional discomfort where they took the fluid I've felt quite fine. Last night I slept well last night as I had no twitches that I could feel all night; whether its a coincidence or not I dont know. The nurse showed me the fluid, it just looked like water. They took an extra sample to donated for research.

I'm expecting a request to see my neurologist in the next few days to discuss the results.

Does anyone have any advice on questions to ask regarding the results? Is there anything in particular information I should look out for or know about? Or is it usually as simple as whether evidence of an infection is or isn't found?

I want to avoid a similar situation with my EMG results where I didn't understand was being said to me.

Thanks for your help.

 

[Nikki J]

Spinal fluid definitely should look like water. There are other things besides infection that can be seen in spinal fluid. There is a finding common in MS for example. Some conditions show increased protein as another example.

really all you can do is listen to the results and ask what they mean in your particular case. If there is an abnormality you can ask what conditions it suggests, if more tests are needed and what is next. If it is normal you still want to ask what remains in your differential diagnosis and what is next for testing

 

[Bestfriends14]

7 years, 55 messages on this thread alone, yet you won't let of your obsession, even though you know deep down inside you do not have ALS. Please, let's have respect for the folks who actually have this disease. At this point, you're making a mockery of people who have ALS. How cruel and tone deaf.

 

[Clearwater AL]

This has gone on for four pages and you have posted 25 messages. I'd say until you have
your EMG (I'm not going to go over 4 pages to see if there was others) there is
nothing more to post and nothing more anyone here can add other that closing
this 4 page thread until...