Old 06-12-2013, 01:41 PM #1 (permalink)
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Default Starting to understand ALS is a wait and see diagnosis.

The more I research I see more people who get normal EMGs or only show one thing and then it becomes a waiting game to see what progresses.

I guess this is where I am. Limbo land and it sucks. Meanwhile my swallowing is bad, I'm full of fasiculations, my energy is terrible, voice is weaker, legs are weak, dexterity is poor.

I don't know if I should be preparing or what. I just feel lost and am so weepy.

Thanks for reading. Just feeling so down
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Old 06-12-2013, 02:07 PM #2 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

Hi I am sorry you are in Limbo. Not knowing is hard but no matter what we should all be trying to live each day as fully as we can. I know you posted the report of your EMG and there was a recommendation for follow up. Are there any plans for any visits or tests between then and now? From what you have posted I still think there is another answer here but what about a second opinion? Will your insurance allow you to go to MGH? I think their ALS department is the best!
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Old 06-12-2013, 03:34 PM #3 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

Mgh requires a referral from a physician so I haven't done this yet.

Next up is more blood work (a lot) and a spinal MRI. I just feel like these tests are going to be normal and then what?
I guess that's when I would press for mgh
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Old 06-12-2013, 08:11 PM #4 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

I know you guys are not doctors and can't diagnose me but can someone tell me if they think I should be worried about ALS because I am very terrifed I'm young 18 and I know it's rare in the young but I did have the Gardasil shot about two years ago and that's when the twitching started in my thigh, butt, stomach, calfs, arms, knees but mostly thighs they feel different sometimes may I also mention I am a mother of a 7 months old baby boy, pregnant, and married my other symptoms then the twitching started about 4 months ago when I started getting these horrible headaches about a month after the I lost 7 lbs for no reason but I was really bloated and have diarrhea/constipation for about a month I also noticed I was urinating so much more then I ever did when I was pregnant and I also had a couple times where my chest/throat/jaw went numb for the whole day I've been to the er a lot two of the times my heart rate was high one 180 the other time 130 they did a EKG which came back okay but I noticed that my chest feels weak a lot like its hard to breathe I notice myself breathing really shallow and that increases my heart beat within the last month I've got horrible mucle aches in my legs and joint pain in my knees, hips, and fingers the knee pain started weird one day it felt like there was pressure in my left knee and the next day it was in my right to its so weird my legs look skinnier you can see my bones more it seems like everyday my arms feel so fatigued I can't even fold laundry I can pick my son up but the moving around that involves folding laundry is what wears my arms out. My doctor thinks its all depression my physciratist says she don't think I'm depressed that I do have anxiety but its because all my health issues I finally got my doctor to refer me to a neurologist which I will be seeing next month when I asked my doctor if she thought I had Als she giggled and said you do not have Als or you wouldn't be walking the same and it would have shown in your cat scan which I know isn't true I'm so stressed out I feel like I'm dieing and my doctors is an idiot and don't know enough to tell me I don't have Als I cry daily I hurt all the time I'm not the same wife and mom I was before this I just want my life back and I feel like it will never happen. :,( I've had a cat scan of the head which came back normal Ultrasound of my stomach which came back normal Full blood count normal thyroid normal urine tests normal only thing I've ever been told was that my muscles were eating thereself because I wasn't eating enough I'm always worried that my muscles are eating thereself because I have Als please tell me what you guys think?
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Old 06-13-2013, 12:51 AM #5 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

This is exactly how my dads neuro explained it, wait and see. I still hope for a multifocal motor neuropathy diagnosis but we are treating like ALS. It's sucks for everyone involved.
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Old 06-13-2013, 01:15 AM #6 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

I thought a clean EMG ruled out ALS?
Are there instances where the EMG results are inconclusive?
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Old 06-13-2013, 01:49 AM #7 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

Clean EMG means no ALS...I promise
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Old 06-13-2013, 01:59 AM #8 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

Thanks...I was just wondering why people have repeat EMG's if the first was clean. I read a little about EMG's and it seems like they are good at showing specific and very identifiable processes that are gong on.
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Old 06-13-2013, 02:12 AM #9 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

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Originally Posted by Danielson View Post
Thanks...I was just wondering why people have repeat EMG's if the first was clean. I read a little about EMG's and it seems like they are good at showing specific and very identifiable processes that are gong on.
Sometimes the repeat EMGs are for another doctor. Each doc wants their own EMG & results. Sometimes the dr wants to do another in a few months to make sure everything is still "clean". IMO the first clean EMG is good. More EMGs= more $
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Old 06-13-2013, 02:33 AM #10 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

Gotcha. I bet they make big money from these tests that people have to wait for and worry about! And I supposed some people demand to be tested again and again.
I'm going to take my good EMG result and run with it! I don't know what the neuropathy part of the exam means exactly, but I know it's not ALS related.
Now I have to wait on a surgeon which is also a long wait, but I'm actually not in a hurry for this one.
Best to you.
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Old 06-13-2013, 10:27 AM #11 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

In my instance, I had something show up on my right leg, which is the one with foot drop and the larger faciculations. Even though I have poor dexterity, bad swallow and the clinical exam showed weakness, it didn't show up on the EMG other than that right leg.

I have come across people here diagnosed with ALS who have had clean EMGs, one person in particular who was young like me who had the same leg EMG results, but after 8 months had passed, she was diagnosed with ALS. So I really don't think clean EMG is the be all, end all.
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Old 06-13-2013, 11:44 AM #12 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

One of the problems is that EMGs are very operator dependent. So if you have an ALS center, like the Mass General, you have a better chance of an accurate EMG. I had several in the community that were negative before the expert did the final one. I had a probable diagnosis for 2 years before that final emg. Good luck!
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Old 06-13-2013, 12:35 PM #13 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

Quote:
Originally Posted by JustTrying View Post
In my instance, I had something show up on my right leg, which is the one with foot drop and the larger faciculations. Even though I have poor dexterity, bad swallow and the clinical exam showed weakness, it didn't show up on the EMG other than that right leg.

I have come across people here diagnosed with ALS who have had clean EMGs, one person in particular who was young like me who had the same leg EMG results, but after 8 months had passed, she was diagnosed with ALS. So I really don't think clean EMG is the be all, end all.
Since you had an abnormal EMG of your right leg, your EMG wasn't clean. You mention another PAL here in the forum who had EMG results like yours. It also was not a clean EMG. A clean EMG means no nerve denervation was found.
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Old 06-13-2013, 12:41 PM #14 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

Right, mine was not clean. I should have said, mine did not show both LMN and UMN so an ALS diagnosed was not given. The same thing happened to the poster I mentioned but she ended up w/ als diagnosed.
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Old 06-13-2013, 01:30 PM #15 (permalink)
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Default Re: Starting to understand ALS is a wait and see diagnosis.

I'm kind of confused.
The neurologist said I had a good EMG except one area on my leg.

The abnormal findings were:
Slight prolongation of the right median and right radial distal sensory latencies.
Mild slowing of the right tibial motor conduction velocity.
Mild prolongation of the right sural and right superficial peroneal distal sensory latencies.

The summary stated:
remarkable for mild neuropathic changes suggesting a very mild diffuse polyneuropathy.

So is this a 'clean" EMG as far as ALS goes?

My confusion is I'm not sure which process is ALS related.....neuropathy, myopathy?
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