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Cubanborn87

Tongue Atrophy Part 2

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Sorry guys, another post. Each day I see less and less hope. As I sit here waiting for my EMG results. 

Today I was noticing my tongue getting fatigued just by me eating or talking. Like the muscles under the tongue felt weak and my tongue has had a salty feel to it lately. I then decided to take a look and it was horrifying. The tongue also seems to be very white as if has lost color. Also I think I see atrophy all over it.

 

I just don't see any more hope. It's unfortunate, I love my 2 little girls but what can I do . 

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Your tongue looks the same to me as it did in the other pics. The white stuff on the surface can be bacteria or other stuff which can accumulate when you have a cold/are sick or don’t eat well. I notice more of it when I eat a lot of sugar. I use a tongue scraper after I brush each morning. It’s nothjng to be worried about but it can cause bad breath so I try to eliminate it as beat I can by eating healthy food, cutting down on sugar and brushing/scraping the tongue each day.

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Nothing wrong with how your tonuge looks. Atrophy is after clinical weakness. Based on your pictures, if you had tongue atrophy due to als there would be no way you could move your tongue like that.

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11 hours ago, Iugrad91 said:

Your tongue looks the same to me as it did in the other pics. The white stuff on the surface can be bacteria or other stuff which can accumulate when you have a cold/are sick or don’t eat well. I notice more of it when I eat a lot of sugar. I use a tongue scraper after I brush each morning. It’s nothjng to be worried about but it can cause bad breath so I try to eliminate it as beat I can by eating healthy food, cutting down on sugar and brushing/scraping the tongue each day.

I have a very bad habit of never brushing my tongue. I will definitely start working on it right away.

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12 hours ago, clearhead said:

Nothing wrong with how your tonuge looks. Atrophy is after clinical weakness. Based on your pictures, if you had tongue atrophy due to als there would be no way you could move your tongue like that.

But those first pics I posted are very concerning , I don't remember those deep blue veins being there before and also it almost looks like the muscle is coming lose in that picture. I have had a very weird taste in my tongue all week as well. When I was talking I kept feeling the muscles under my tongue feeling fatigued. So I finally said let me take a look and then saw that. I don't know but it's almost as if every week I see something else going on 

That thing on the back of my tongue has been around for 2 weeks now and it's not going away. I also think that looks like atrophy but people I show it to usually tell me it's not. I am not sure if I am that paranoid or what. 

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Is it possible to have atrophy on my left foot , left hand and tongue all at the same time? Without any real weakness? How obvious would this weakness be? Would this be a little muscle that you can't even notice , or would it be very noticeable? My foot issues started in November hand probably about a month ago and tongue this week.

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1 hour ago, Cubanborn87 said:

Is it possible to have atrophy on my left foot , left hand and tongue all at the same time? Without any real weakness? How obvious would this weakness be? Would this be a little muscle that you can't even notice , or would it be very noticeable? My foot issues started in November hand probably about a month ago and tongue this week.

Cuban, I think what confuses me the most about you is you really don't understand how als works.. I know you have googled it.. but either your anxiety won't let you see the facts or you really just don't understand. How many people have to say no for you to know you don't have it? One of those people being a neurologist!!! Neuros don't draw pictures for people with possible als.. they are busy getting them help.. he was trying to help your anxiety. He even said you need help with your anxiety which you still do desperately. When your emg comes back normal, you will find something else.. like before you had colon fears. You need therapy. 

And no als does not jump around like that, you've been told that over and over. 

Call your Dr Mon and demand the results. They are yours, you paid for them.. let them know that you have anxiety so bad over them. They just have to read it to you.. I would go up there if i had to.. no need to put yourself through this crap for a day longer. 

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21 minutes ago, Holls said:

Cuban, I think what confuses me the most about you is you really don't understand how als works.. I know you have googled it.. but either your anxiety won't let you see the facts or you really just don't understand. How many people have to say no for you to know you don't have it? One of those people being a neurologist!!! Neuros don't draw pictures for people with possible als.. they are busy getting them help.. he was trying to help your anxiety. He even said you need help with your anxiety which you still do desperately. When your emg comes back normal, you will find something else.. like before you had colon fears. You need therapy. 

And no als does not jump around like that, you've been told that over and over. 

Call your Dr Mon and demand the results. They are yours, you paid for them.. let them know that you have anxiety so bad over them. They just have to read it to you.. I would go up there if i had to.. no need to put yourself through this crap for a day longer. 

I know it doesn't jump around my question was could it start slowly in my foot and before I saw any significant impact start slowly in my hand and therefore my tongue. I guess that's what I was trying to ask. 

Good Point Holls, I'll definitely do that. I basically just sent him a message through the patient doctor website which is called Duke My Chart. It's great to communicate with providers. I told him that as soon as he had the results to please notify me by either email or phone. But, if I don't hear back in the afternoon, I'll definitely call them. That way I can get all this over with tomorrow. 

 

They basically had all day Thursday and Friday to go through it. You would think by Monday they should be able to give it to me.

 

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14 minutes ago, Cubanborn87 said:

I know it doesn't jump around my question was could it start slowly in my foot and before I saw any significant impact start slowly in my hand and therefore my tongue. I guess that's what I was trying to ask. 

 ALS usually starts in one small place (say a thumb) and it migrates from there to other fingers, then the wrist, then the forearm, bicep, shoulder, and so on. It leaves a wake of dead, unusable muscle behind that quickly (within a couple of weeks) wastes away & shrivles-up because they can no longer receive signals for use, thus losing any and all exercise to keep those muscles toned.

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You can see the veins on the bottom of my tongue if I roll it like that. Everyone can. You’re hyper focused and questioning things that are totally normal.

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1 hour ago, Iugrad91 said:

You can see the veins on the bottom of my tongue if I roll it like that. Everyone can. You’re hyper focused and questioning things that are totally normal.

Does it have that muscle mass  popping out like mine does? 

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1 hour ago, Cubanborn87 said:

Does it have that muscle mass  popping out like mine does? 

For the love of God man! Please stop this. You’re not doing your family or yourself any good with all of your hyper focusing.

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@clearhead @Iugrad91 OK, I will try. I Some days are better than others is just that when I start seeing new things or feeling new symtoms I start going down the hole again. I have had a few stretches where everything is great for a few days, but then something happens and it knocks me off that streak.

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1 hour ago, Cubanborn87 said:

@clearhead @Iugrad91 OK, I will try. I Some days are better than others is just that when I start seeing new things or feeling new symtoms I start going down the hole again. I have had a few stretches where everything is great for a few days, but then something happens and it knocks me off that streak.

We understand. I can tell you that I have been where you are. Self examining everything from moles to stools to the point of obsession. Please don’t take it the wrong way but we have been telling you how als progresses and you don’t fit the bill. We don’t know what’s wrong with you, but can say with a reasonable degree of certainty, it isn’t als.

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1 hour ago, clearhead said:

We understand. I can tell you that I have been where you are. Self examining everything from moles to stools to the point of obsession. Please don’t take it the wrong way but we have been telling you how als progresses and you don’t fit the bill. We don’t know what’s wrong with you, but can say with a reasonable degree of certainty, it isn’t als.

I know, and I actually appreciate how patient you guys been with me. I know in any other board I would have been banned already lol I really hope they can give me the results tomorrow. 

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1 hour ago, Cubanborn87 said:

I know, and I actually appreciate how patient you guys been with me. I know in any other board I would have been banned already lol I really hope they can give me the results tomorrow. 

Ok but then after the results it's time to move on with your life. 

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Guys , I don't get this at all. No matter what I try, whether I eat terrible food or not. I actually have been trying to gain weight for the last few weeks after my initial weight loss. Regardless what I do or try , I am still losing 1 lb each week.

 

Does Prozac cause weight loss at first? That would be the only thing that I could think of other than muscle waste causing it

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Antidepressants/SSRIs can sometimes cause minor weight loss. If you're concerned about it, speak to the prescribing provider. He/she can evaluate and take any steps needed to correct it, but I don't think it's an issue, personally.

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32 minutes ago, bin_tenn said:

Antidepressants/SSRIs can sometimes cause minor weight loss. If you're concerned about it, speak to the prescribing provider. He/she can evaluate and take any steps needed to correct it, but I don't think it's an issue, personally.

I think I'll wait a few more weeks. I actually gained weight the first 2 weeks after I noticed I had lost about 8 lbs. But the last 2 weeks I have lost 1 lb each week 

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@Cubanborn87 again, like I've said before, I 1000% empathize with your fear and anxiety. I am not exaggerating, I was ready to say goodbye to my family. I was so certain that I had ALS that I was starting to prepare for the way my family would have to carry on without me and how we could budget for in home care. Down to the medical supplies. It is a form of obsessive compulsive disorder and it is based in nothing more than fear and anxiety. It robbed me of about 18 months of my life. I spent an entire beach vacation (and my family struggles with money, so this was something we'd saved up for for years) in my hotel room, crying by myself about how I was dying.

I hope you get your answer about ALS today and I hope you can put that fear to bed. Remember: the EMG will not lie. But beyond that I hope you can move on a little more in general. You are fixated. Weight fluctuates. I am not a doctor and if, after you get good news from your neuro, you are still concerned about unintentional weight loss AND you are making an effort to just eat healthy and not fixate, see your GP and see what they have to say. I feel for you, man. I really think you are going to be ok, but I listen to you and I hear myself from last year and I just wish I could shout at past me "STOP CATASTROPHIZING YOU ARE FINE!" So I'm doing that to you :)

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9 minutes ago, enidoreilley said:

@Cubanborn87 again, like I've said before, I 1000% empathize with your fear and anxiety. I am not exaggerating, I was ready to say goodbye to my family. I was so certain that I had ALS that I was starting to prepare for the way my family would have to carry on without me and how we could budget for in home care. Down to the medical supplies. It is a form of obsessive compulsive disorder and it is based in nothing more than fear and anxiety. It robbed me of about 18 months of my life. I spent an entire beach vacation (and my family struggles with money, so this was something we'd saved up for for years) in my hotel room, crying by myself about how I was dying.

I hope you get your answer about ALS today and I hope you can put that fear to bed. Remember: the EMG will not lie. But beyond that I hope you can move on a little more in general. You are fixated. Weight fluctuates. I am not a doctor and if, after you get good news from your neuro, you are still concerned about unintentional weight loss AND you are making an effort to just eat healthy and not fixate, see your GP and see what they have to say. I feel for you, man. I really think you are going to be ok, but I listen to you and I hear myself from last year and I just wish I could shout at past me "STOP CATASTROPHIZING YOU ARE FINE!" So I'm doing that to you :)

I know!! God I know exactly what.you mean. I have been thinking a lot lately about all that regarding budget, what a huge impact to my family's lifestyle me being gone would mean, my daughter's losing me at such a young age and barely even remember me when they are grown. One of my kids is 10 and the other one is 6. It is a terrifying place and a dark state of mind to be in. 

I hope so as well, I emailed the doctor and I got a notification about 2 hours ago that the nurse had forwarded the message to the doctor. I am really hoping that he responds to me soon, the EMG was last Thursday at 8 AM. It has been a tough 3 days and I am hoping to finally get some type of feedback today.

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4 minutes ago, Cubanborn87 said:

I know!! God I know exactly what.you mean. I have been thinking a lot lately about all that regarding budget, what a huge impact to my family's lifestyle me being gone would mean, my daughter's losing me at such a young age and barely even remember me when they are grown. One of my kids is 10 and the other one is 6. It is a terrifying place and a dark state of mind to be in. 

I hope so as well, I emailed the doctor and I got a notification about 2 hours ago that the nurse had forwarded the message to the doctor. I am really hoping that he responds to me soon, the EMG was last Thursday at 8 AM. It has been a tough 3 days and I am hoping to finally get some type of feedback today.

I'm gonna be thinking about you today. I know you'll be fine, but I look forward to you getting good news. See if you can shift your fixation onto planning a nice family day or planning something you enjoy for when you get the good news. And let us know :) 

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