Just had an EMG

[Trishia]

Hi,
I had an EMG today. The doc had a hard time getting anything decent from the neck part of the test (she said it's often the most difficult part to get decent results from ) so I'll be summoned to another one that is based on needles. I thought the part where she dug in the needles in legs, back, arms and shoulder was less than comfy ...
Do PALS experience stiffness in muscle parts and the stiffness later disappears? I've had several occasions when, for instance, the muscles in my butt and back of my legs go stiff, but feel unstiff a few hours later.

I have a hard time whistling nowadays, or rather, my mouth gets tired from whistling and I can feel the fatigue reach into my neck. Anything like ALS? I'm beginning to think and accept the idea that it's a possibility that I do have it. But listen to this for quirky stats: My best friend's brother died from MS, her husband's closest friend has suffered from ALS over the past 18 months, and possibly, I might have it. Incredible.

Am I worried? You bet.

 

[rose]

Trishia,

In response to your question about whistling, People with ALS who cannot whistle, have this problem because they cannot pucker their lips into a small enough circle to make the sound come out, whether or not it makes their lips feel tired is somewhat irrelevant. The lips have a "purse string type" muscle that gathers them together, the facial nerve (#7) is what controls both this, and the ability to close eyes tightly.

I'm no expert in the least, but , what you describe in this post, as well as your previous ones does not sound like AlS. Like others mentioned, perhaps Myasthenia Gravis? The tiring you describe would be typical of MG....And, as the neuro said to you, psychosomatic issues can affect the voice as well as the other parts of our bodies. A clinical exam by a competent Neuro or ENT would reveal if you have lip or tongue weakness. Most people, including myself, have found that a medical professional discover these types of weaknesses before they themselves are aware of it.

Good luck to you, I hope you get to the root of the problem soon.

 

[BethU]

Trishia ... I agree completely with Rose ... if you can whistle but find your muscles tiring as you continue, that's not ALS. With ALS, you either can or you can't. In Myasthenia Gravis, which has many similar-sounding symptoms as ALS, the muscles weaken as you perform an action. After some rest, you are able to resume the action, but the muscles will again weaken as it goes on. A subtle distinction but an important one. MG is cureable!

A neuro can identify what's happening.

Good luck.

 

[Trishia]

Rose and Beth - Thank you!

Dear Rose and Beth,

Thank you from the bottom of my heart. I realise that I was being selfish asking these questions when you have actually been diagnosed with ALS. I feel humbled.

Have you ever thought of getting together and writing a collection of your life stories? The money could go into research OR to making life easier for PALS. Although I'm only a teacher, I do teach English and would gladly help with the proof reading/editing. I noticed that Beth is an editor, and if everyone pools their resources it could be a remarkable piece of work. You could get Oprah to put it on her Best Books List

If there is anything, anything at all I can do for you guys just say so.

 

[katmomma]

Trishia-
Did you get any results from your emg? What did your neuro say?

 

[halfin]

Hi Trishia - I agree that the needle EMG can be pretty uncomfortable. I only had it in arms, legs, and a little bit in the back, never shoulders or neck. Sounds like your neuro is being very thorough. Some people get it in the tongue, that seems like it would be very unpleasant! I asked my neuro about that since I had bulbar (voice) onset but he said that he didn't find tongue EMGs reliable.

That is interesting that you mentioned whistling. I was diagnosed 2 months ago, first noticed symptoms 5-6 months ago, and haven't tried whistling for a while. Not a lot of cause for it around here lately! But I just tried it and I can whistle just fine. I can't sing very well any more, my voice is weak and my notes waver, but the whistling was spot on. That was quite encouraging and rather fun, and I'm glad you asked about it.

I hope you get good results from your EMG report and that you feel better soon.

 

[GlenBrittle]

Well that is disappointing.

I cant whistle at the girls anymore. I guess I will flail my arms about in the air and when they notice me , I will wink at em.

*sigh*

 

[BarryG]

Glen, you can always drool, it works for me :roll:

 

[lydia]

I also thought it would be worth something to have some of the more memorable threads on this site published in some fashion or another. This place is priceless in so many ways- I really think people would shell out money to read the thought-provoking, inspiring, touching, amusing, heart-wrenching, fascinating, sometimes inflammatory, and frequently educational dialogue that goes on here. Why not put something together, along the lines of, "best of 2009 ALS forums" where the proceeds could help offset the costs of running the site? I know I would buy it.

Lydia

 

[Blackpool]

It woul be a great gift for the person who has everything and easy shopping for us.