Devasted after a follow-up EMG

[tonguetwitcher]

i,ve done an EMG 2 months ago (I wont repeat the whole story, I guess it could be easily found if needed) with an ALS specialist from MOntreal . The doc told me to see her againfor a follow up and to do some bloodtest (she thought that my ymptoms could be related to Mystenia gravis) and tjhat my exam was normal.

Now come the appointment of today. She told me that bloodwork was normal. I've done a nerve conduction test and the needle part (EMG).

She told me : '' I can now see the fasciculation you are feeling, it's different from the last time. It's still not ALS yet but that will need a follow up again in 3 months''. I ask her if it could be benign '' it could be'' she said, and when I ask her could it be ALS she Told me ''that it could always be that too'' only time would tell.

I told her that this his very stressfull to me, instead of trying to reaasure me she prescribe me something (Ativan i think) to manage my anxiety.

When I wnet to the secretary to get an appointment the secretary told me that the doctor wants me to do a respiratory test. Of course she doesn't know why and the doctor was nowhere to told me why she needs that exam. Do you have any idea ?

Also she done some neurologic test with the hammer, and my left leg have not react the same with the right did. The left seem normal and the right seem sluggish, or less pronounced than the left. The EMG was done on the right of my body. Is that ''sluggish'' reaction could be indicative of ALS ?


Since she's a specialist and that found some als signs, i guess I can realistically think that I got one foot in the disease.....

And I forgot to ask her something: I have pain in my right arm for 2-3 weeks, it statrts from should goe in the tricep and continue to the thumb. Could an abnormal finding be related to that pain ?

 

[lgelb]

The arm pain is not a way that ALS usually starts. It could be many things, including sleeping in a bad position. Slow reflexes can mean many things as well, or nothing.

A respiratory test is ordered so the doctor can see if there is any weakness in the muscles that help you breathe and if there are any changes in your lungs that make your breathing less effective. It is part of trying to see what your diagnosis should be.

 

[tonguetwitcher]

Thanks for that answer.

Lungs wekness....another sign of ALS I guess. If she want to check my lungs I guess that she really think I got it.

 

[lgelb]

Not necessarily. Adult-onset muscular dystrophy, for example, could also include breathing problems.

 

[tonguetwitcher]

Thanks once again. From what I can read on the web I hace no symptoms at all of musucular distrophy, I can't say the same about ALS.

And I know that arm pain is not a sign of ALS but what I was asking is that if the arm pain could be cause by something that gives abnormal findings on EMG. She only told me about Fasciculations, I dont know if she saw something else. by the way does fasciculation findings on EMG are by themselves indicative of a major problem or they could be benigns ? ?

I really dont know how I will manage that 4 months wait before another EMG.

 

[KimT]

Although people with ALS do have fasciculations, many, many other people without ALS also have them. My neurologist has them in both his legs. They are visible and he can feel them all day long. An EMG alone cannot establish whether you have ALS.

I know it's hard, but try to get your anxiety under control because no matter what is wrong, anxiety will make it much worse. People can get fasciculations from anxiety alone.

There are so many things that can cause abnormal EMGs. The arm pain could be caused by herniated discs in your cervical spine. Have you had MRIs of your brain and complete spine with contrast?

 

[WendyWooG]

Fasciculations can be caused by a number of problems including benign fasciculations syndrome. You wouldn't be diagnosed with ALS if that is the only abnormality on your EMG.

That's good news as it means there are lots of other treatable things that could still be possibilities. Your doctor is keeping a close eye on you and monitoring, unfortunately neurological problems are quite difficult to diagnose so it can take some time.

Good luck

Wendy

 

[gooseberry]

Remember, with als you must show progression. It sounds like your doctor is ordering tests that will help with a diagnosis or rule one out. That is a good thing. Next time uou see the doctor, ask what has been ruled out and what is still on the table.

 

[tonguetwitcher]

Thanks once again for all those answers !

What is killing me now is the wait, not knowing what it could be. Giving the fact that the doctor who told be that it might be ALS is THE specialist of that disease in Canada gives me more worries.

My fasciculation are widespread and got them more since it all start 6 months ago and since now I've pout in on the stress. But Since she ahevnt seen them the first time (and I could feel them at that time) and that she hae now seen them is pputting me a lot of question marks. Feeling tehm was ok, being told that ''i now get thet onthe EMG' by an ALS specialist isn't the same at all !

 

[gooseberry]

You can worry yourself sick or understand you have no control in what the diagnosis will be. Getting a diagnosis of als is not fun and causes incredible stress. I would look into meditation, deep breathing, etc to relieve your stress.

 

[ShiftKicker]

Hiya, Tonguetwitcher-

As a fellow Canadian, I understand the issues with the wait times you are experiencing. I found good results if I called the place I was referred to and letting them know I was available if they had any last minute cancellation. It got me in early a few times that way.

One of the things I struggled with when I was still searching was misinterpeting statements/intent from my doctors. It's very likely your doctor was actually reassuring you when they said you are seeing the ALS specialist- because then you would be confident in them when they tell you it's definitely not ALS. I hope that makes sense.

Anyhow, best of luck. Please also ask your doctor for a referral to a psychiatrist asap. The wait time can be really long (as usual), and it's imperative to have someone who can help and support you through high anxiety no matter the outcome.

 

[tonguetwitcher]

Shiftkicker, thanks for those words. Some informations, I cant get a sooner appoinment since she insist on the fact that there must be a 3 months wait before having another emg.

Maybe i was not clear but I only seen one doctor and that is the ALS specialist. Thats why im very worried she (the ALS specialist) told me that it could be Als. The last Time she says "no sign of ALS" so I guess there must be a big change in my Emg giving the fact that is opinion have radically change.

We have a family trip schedule for one month in Portugal and Spain in july...My appointement is in august.....I dont know how I could enjoy that trip but at the same time it could be a precious moment to share with my wife and kids.

 

[Angiegal]

Hi.
Just had to throw in my 2 cents.
I get that you're worried. I think we ALL understand. Let me be brutal. What good is worrying at this point?

Your doctor (the BEST, from what you said) wants to see you again in 3 months. Great! It will probably be more tests. Until then, GO LIVE your life! You have trips booked? Travel! Get the experiences. See the sights. Enjoy. Nothing to be done except wait.
Oh, of course you could cancel all your plans. Sit on a computer, and "google" yourself into a mess. Your choice.

PS. I would love to see pictures from Portugal and Spain. Just sayin'.

 

[tonguetwitcher]

There's nothing brutal in that answer, it's just plain reality. My wife have the same point of view than yours.

Something new, i've taken .5 mg of Ativan( prescribe by the neuro) last night go get better sleep and ease my twitching. Notre very conclusive. Ive slept 5 hours straight and the twitching still There. If the twitching is not going away I guess I can say that they are not stress related.

 

[fishmanpa]

If the twitching is not going away I guess I can say that they are not stress related.

Not necessarily true. Anxiety and stress are hard on the body.

Remember...

Anxiety is like a campfire. When you're in the midst of a spiral the fire is burning bright and hot. When the flames die down, there's still a bed of red hot coals burning away just waiting for some more fuel. You may not feel anxious but your body is still on high alert and has a bed of hot anxiety coals inside just waiting to flare up. Just like a campfire, the hot coals of anxiety take a long time to finally go out.

Positive thoughts