Lost and Scared

[elysse8]

I just turned 32 yesterday. I am a mother of a 2 year old.
I can't believe this is happening, but I need support and want to get a diagnosis.
Here's where I am so far...

It started with feeling weak in my right leg and getting muscle twitches and fasciculations all over, mostly in that right leg. My arms felt weak. I started to notice that wherever a nerve felt like it was dying I would get a little discoloration outline and numbness. I am having muscle atrophy. All of which the doctors can't see so I feel like they are dismissing these last two symptoms. I know my body and I can see the atrophy and discoloration. I feel like little popping near my abdomen also.

About a week into these symptoms, I started to have a feeling of a little lump in my throat. Little by little in the matter of a month, that lump has turned into a feeling of my muscles near my throat atrophying and becoming weak. I feel like it's becoming harder to swallow, but I am getting the food down. I lost about 20 lbs. in a month.

I've done all the tests to rule everything else out. Everything negative. EMG/NCS came back clean. Not sure if that even matters since this disease is progressive. The Neurologists at Sansum Clinic In Santa Barbara have said this doesn't sound like ALS, I would worry about something else. One neuro is attributing that statement to never seeing any ALS patients coming in for muscle twitches first. The other neuro is saying that most ALS bulbar onset patients don't have any pre-cursors to their bulbar symptoms like I'm having.....isn't feeling muscles weakening and lump in throat getting worse a bulbar symptom?

The only test that has come back abnormal is an EEG. The doc is reading that today. I feel like the progression is happening too fast. I know it hits everyone differently, but could it be hitting my entire body this fast? I feel like it started out with my leg muscles feeling weak, but could it be that it was bulbar onset all along?

I need answers and feel like a diagnosis is taking too long. Friends and family are saying to thing positive and it could be anything. Well, the tests have all come back negative. I feel like anything else it could have been is out the door.

Lost and scared.

 

[Atsugi]

Relax. You don't have ALS. Although I'm not a doctor, I know ALS fairly well and you don't have it.

First and foremost, you said you have a clean EMG. An EMG is the gold standard test. It would be dirty with specific signs pointing to ALS months in advance of any symptoms showing up.

Second, atrophy in ALS is obvious to doctors. They know what it looks like, and if they didn't see it, then what you're seeing isn't the type and degree of atrophy that ALS would make. Also important: In ALS, atrophy comes AFTER the muscles have been paralyzed, limp and useless for weeks or months. You didn't describe a paralyzed muscle, so whatever atrophy you're seeing isn't caused by ALS.

Third, as to bulbar ALS. When ALS starts this way, the tongue muscles become paralyzed, limp and useless so that your slurred speech is obvious to everyone. There's no lump in the throat feeling.

Don't sweat the twitches. Twitches are so common they're not diagnostic of anything. In fact, many perfectly healthy people have twitches frequently, in one body part or all over.

ALS has no discoloration or numbness. There is no feeling associated with ALS. And the weakness is profound. There's a difference between perceived weakness and clinical weakness. No doubt your doctors did a very simple but surprisingly thorough strength test of your hands and feet, which is designed to find clinically weak muscles. The doctors would have been concerned if you failed that test.

If your doctor's not worried about ALS, you shouldn't be.

Work with your doctors to discover your problem. Could it be anxiety or stress? I can't diagnose you, but the EMG is really determinative. Worry if you must, but not about ALS.

--Mike

 

[affected]

hi Elysse, as Mike says you truly can relax on worrying about ALS as you don't describe any of it at all. I'm so glad to be able to tell you that. My husband had bulbar onset and it really is so very different to all the things you are 'feeling'. Out of curiosity did you read the sticky post at the top of this forum? It really says it well.

The EMG would have shown ALS even before you noticed symptoms so you can really believe these neurologists.

You can't feel the nerves dying as ALS is about motor nerves, not the sensory ones.

I hope you can get some help for your anxiety and learn to relax about your ALS worries. Anxiety really can cause all of the symptoms you've described.

 

[elysse8]

Thank you for the words, Mike. I've read that you could have many clean EMGs and still have ALS?

 

[elysse8]

Tillie,

Thank you also for those words. I have seen people talking about sticky notes....not sure where to find that....

 

[affected]

Elysse you won't have read in out sticky that you can have many clean EMG's.

Did you read it yet? It is our official position, we won't move from it.

Honest you can relax, we know ALS really well and you don't describe it.

 

[affected]

Elysse

the sticky is titled NEW MEMBERS please read before posting and right under the New Thread button.
So we are always confused when people couldn't find it.

but no matter, here is the link for you


https://www.alsforums.com/forum/do-i-have-als-als/26591-new-members-please-read-before-posting.html

 

[elysse8]

My grandfather died of ALS in his 50's. My first thought was familial.

 

[Dusty7]

As Nikki (our FALS expert...sadly) will tell you, one member of your family with ALS does not increase your odds of familial ALS (unless you have a known genetic mutation).

And if you have read that "you could have many clean EMGs and still have ALS," please tell me where you read that.

 

[elysse8]

Dusty,
I have read so much, I can't remember exactly where. I did, however, have the neuro who did my EMG tell me that if I have a progressive disease, my primary neuro may want to do more EMG's in the future.

I also think I described one of symptoms oddly. I am sorry, but I would like the opportunity to rephrase.

I wrote, "I started to notice that wherever a nerve felt like it was dying I would get a little discoloration outline and numbness."
I do feel like a nerve is dying. After a while, that area looks kind of like a vessel outline, almost like a bruise and leaves a little hollow in its wake. I feel a slight numbness in those spots.

 

[Atsugi]

feel like a nerve is dying...vessel outline,...leaves a little hollow...slight numbness

Nope, nope, nope. Not ALS. First, you don't "feel" a motor nerve dying. Second, the nerve damage that occurs in ALS is in your brain and brain stem, not down in the body. You don't feel anything at all. Third, while I have no idea what's eating at you, I know really well that it's not ALS.

Also, all the replies you've gotten in this thread are good replies. Wherever you may have read about people getting good EMGs and ending up with ALS would be suspect. Lots of people post weird stuff, even here, but that doesn't make it true.

Finally, don't believe us. Believe your neurologists. You said you feel like anything else it could be is out the door. Nope. Until you have as much experience and training as your neurologists combined, you can't truthfully make such a statement.

If you must use Dr Google, don't waste your time on ALS websites.

 

[elysse8]

You all have been very uplifting. Thank you.
I Just.......I TRULY want to take all of this input and just say, "SCREW IT! THEY'RE RIGHT."
I'm just so scared because the symptoms in my throat especially, are progressing. No, I haven't slurred, been unable to fully get food down or whatnot, but if I understand correctly, Bulbar onset is when the muscles start to weaken which is what eventually leads to all of that.
I don't want to be scared to ask questions, that is why I came looking for a forum such as this. To be able to talk to people with experience when I can only see doctors far and in between is a huge comfort.

Has anyone heard of someone with ALS noticing that the muscles in the esophageal area started to weaken causing a feeling of not being able to get food fully down until the second swallow? Or does it ALWAYS start with the tongue and is unnoticeable?

Also, is it possible to have Bulbar onset and also have limb onset symptoms? Could it be that I am so early in my stage that they just can't say it is ALS yet?

 

[Nuts]

Elysse, please let this go. The PALS on this forum have a very limited amount of energy, and some are typing using eye gaze, which is very slow. Once you've been told by such senior members as Mike and Tillie that it doesn't sound like you have ALS, you should stop pushing, as the rest of us are either watching our loved ones suffer this disease or recovering from the experience, which is devastating. You've been told by your doctors and by us to relax and forget about ALS. If you refuse to do that, please understand that we will become short with you for insisting on wishing this monster upon yourself.

 

[Atsugi]

Elysse, you're still barking up the wrong tree. Further time here is wasted.

I suspect your symptoms are anxiety and stress related, but you need to check that out with your doctor.
And you asked if you might be so early that they can't say it is ALS.
The EMG would pick up ALS months before any symptoms became visible.

Dusty, Tillie, Nuts, two neurologists, and I have given you good news.

You had a clean EMG.
That's the end of the discussion, really.