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Scott2462

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Finally got into the neuro yesterday. After some tests he came back in and asked me and my gf to sit down. He explained to me that from the Emg he couldn’t deny the possibility of als. I almost lost it right there. I ha e only been ha i g symptoms for six months and he said given my age it seemed unlikely but yet there it was. He ordered me to see a pulmonologist. I just feel like it’s over. I know some of u have been dealing with this for awhile. I just have to ask, what keeps u going? What gives u the “strength” to go? I’m still shaking and have been crying on and off for the past 12 hours. I had a clean emg to als? Should I get a second opinion? Is there anything out there medically that will help with swallowing
 
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lgelb

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Yes, definitely get a second opinion from a clinic on this map. We advise everyone to do that. At a glance, I see Vandy in Nashville and HealthSouth in Memphis. And now I see one (Erlanger) in Chattanooga, maybe closest to you.

Did you have another EMG after the last clean one you talked about? What other tests did you just have, that the neuro is going on?

Don't give up the ship yet. Not being able to rule it out is NOT the same as for sure having it.

Call tomorrow and make an appointment. You can call a couple or three places, take the first appointment available if there's a big difference. You can also ask to be put on a waiting list should someone else cancel.

Whatever it is or isn't, Scott, the strength to go on after a diagnosis like this, is inside each of us, because each of us has promises to keep, until we don't. But as I say, your diagnostic process isn't done and dusted. Hang in there. Hold your girlfriend.

Best,
Laurie
 
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Scott2462

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Thank you. I had just the two emgs but went for physical tests and a swallow test thing sorry I can’t remember what it was called. He asked me to push his arm towards him and I couldn’t do it and I have two toes curled and he did this thing from my heel to my toes with a stick and the went out instead of in so apparently that’s bad? Idk I’m just trying to take this all in. I know this is going to sound opposite of what i just said but the more I think about it the more I just want it over with. I’ve been a horrible person and done things I’m ashamed of. My only concern atm is my fiancé. We were supposed to get married in three week. We’re still doing it but it just doesn’t feel the same now:( I just want her to be happy and hope the next person treats her right. People say slurred speech is first? Can anyone explain that. Slurred like you’ve been drinking or just having trouble with words? Anyone I also have a sleep study Tuesday. I just keep thinking I’m too young for this that maybe everyone’s wrong. Maybe I’m wrong and it’s all in my head, but maybe it’s just the hand I was dealt.
 

Scott2462

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Anything that mimics what I described though? Maybe there is still a chance
 

lgelb

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Yes, there are numerous conditions that can be mistaken for ALS.

If you post the EMG report and any other tests, we can be more helpful.

If swallowing thin liquids is hard, thicken everything to pudding texture and for safety if they are issues, also avoid "bits" like corn and rice.

Besides difficulty with swallowing, what specifically can you not do now that you were able to do six months ago?

As far as speech is concerned, others hear the difference -- that is key. But slurred speech does not mean ALS.
 

Scott2462

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I can’t talk right anymore. At first it was like my mind couldn’t keep up with my mout but now it’s like my mind and my mouth are just slow for no reason. I used to talk fast. Now it’s more like I have to really think and phrase words right so I don’t have problems with how they come out like “”shh” the “ch” sound and a couple more like “pl” it just comes out slurred or very very slow like I’m struggling over a sound. Breathing when laying down is almost impossible. Don’t know when that really changed but I can’t stay on my back for any amount of time without feeling this pressure on my chest. So I have to sleep in my side and recently I’ve been waking laying flat on my back with my legs bent up. Never used to do that. I can’t open my medicine anymore. Got a bad ticker and take bystolic but can’t open the bottle. Gf has to do it. And then give it to me because I can’t hold the pill either. Can’t really hold anything I can fit between my fingers. To clarify tho swallowing isn’t hard really it’s more painful than anything. But I thinks that’s because of the dry mouth I’ve been having these past two weeks. Never told my doctor tho. Live around some weeds I’m allergic to and figured that was it and I snore a lot so just assumed it was that but it hurts because of that I think but I saw some people on here say they have really dry mouths
 

ThroughThatValley

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I'm very very sorry you had to find us, and that you're in the dead zone right now where the diagnosis is still pending.
It's probably the worst place to be.
If it can help, just know you'll ajust to whatever outcome. Even if the dx is confirmed, and after a crazy emotional rollecoaster, you'll find yourself again and peace will eventually settle down, I promise.
For now, there are still good chances, considering your age (how old are you btw?) that your're not in the ALS wagon.
If you eventually happen to go there, know the good folks here are a tremendous community and will provide help and brotherhood.
Don't hesitate, write everything that's on you mind, rant, vent your fears and frustrations out, we are here for you.
Hang tough. These are hard times, but whatever the outcome you'll pull out stronger than before, that I can assure you.
 

Nikki J

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Absolutely get a second opinion from a neuromuscular specialist at an ALS clinic. Not denying the possibility of ALS is not the same thing as you have ALS so there is reason to hope right there. We have also had a fair number of people who were told variations of likely/ maybe ALS and got to the neuromuscular and were told absolutely not ALS. We will hope for that with you

Did your neuro discuss a second opinion? Sometimes they want to wait until they have all the tests back but it is probably worth starting the referral process today because usually there is a wait to be seen. Make sure it is an ALS specialist. Laurie gave you good links
 

KimT

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Scott,

There are so many ALS mimics. Please get evaluated by a doctor specializing in neuromuscular diseases.

Have you had a lumbar puncture? A few autoimmune diseases present with the symptoms you describe.

Don't give up hope, please.
 

Scott2462

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Can I ask everyone an honest question? Can u gain muscle by exercising with als or no? I had an appointment with regular pcp and he looked at all my charts and said to me there was no reason to see dr khana( Neuro) and said try working out and eating healthy. Different pcp ordered tests and this one says they all look fine? Gave me antibiotics for my throat and a steroid. I think that’s helping but I can’t really tell. Should I listen to first doc or second? Advice please. My heart says the als confirmation in August is gonna be a definite thing but obviously hearing that everything is ok I just get excited
 

Nikki J

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You can not rebuild muscle that is affected by ALS.

I am confused. 2 pcps one neuro with a second opinion pending?
 

Clearwater AL

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Scott, your last post before today was March 3rd.

In the past 17 days have you received a copy of your EMG report as lgelb
suggested would better help us help you?

On the last page will be a Summary/Conclusion of your test.
 
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