Cubanborn87

Appointment Summary

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Good afternoon people, I just got out of the Doctor's office. A few things that the doctor told me that I thought were useful to share for those that have anxiety over ALS , including me.

- He said he can almost always spot a ALS patient from the time they walk into the office, without even saying a word to them

- He said he has never met a ALS patient that started the disease by twitching. Usually it's limb weakness

-He also said if you have been twitching for  1 year and a half to 2 years and it was due to ALS. You would be in very bad shape. It would be very noticeable.

-He also said the muscle waste in ALS patients is very clear. He says it happens very fast and it's noticeable 

- He said that ALS does not cause any tingling, numbness etc. He actually showed me in a drawing how ALS works and attacks, and showed me how the area that affects sensory it's outside of that and it's never affected by ALS.

My test went well , he never noticed anything abnormal. He still scheduled an EMG because of the tingling sensations I have been having and numbness. He said he is 99.99 percent sure that I don't have ALS. He said he doesn't like to ever say 100 percent. We also spent a lot of time talking about anxiety, it was clear to him that this was taking a toll on him. I showed him my foot and he examined it and he didn't think there was anything wrong with it. I pointed to him where the tendons stick out more and then he out out his hand and showed me how his stick out as well lol .

Overall I am very satisfied with the visit, he said he has spent sometine of his career dealing with ALS patients. 

My foot it's still a little concerning to me and obviously my numbing and tingling . But after seeing a specialist I am a little more at ease 

Now, we have to wait for the EMG and hope for the best.

Thanks, to all of you. You guys were very supportive and patient with me while I was going through my crisis.

I am not completely over it yet, but I am doing better. 

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So he said pretty much everything Holls and others said 😊 Obviously none of us are doctors and we can’t diagnose anything, but there are some very knowledgeable people on this site with experience dealing with the same fears. It is wise to believe them when they say it’s not ALS.

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6 minutes ago, A11yance said:

Excellent results then I must say I’m glad to hear that 

Thank You Bro, I'll be waiting to hear from you tomorrow

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13 minutes ago, Cubanborn87 said:

Good afternoon people, I just got out of the Doctor's office. A few things that the doctor told me that I thought were useful to share for those that have anxiety over ALS , including me.

- He said he can almost always spot a ALS patient from the time they walk into the office, without even saying a word to them

- He said he has never met a ALS patient that started the disease by twitching. Usually it's limb weakness

-He also said if you have been twitching for  1 year and a half to 2 years and it was due to ALS. You would be in very bad shape. It would be very noticeable.

-He also said the muscle waste in ALS patients is very clear. He says it happens very fast and it's noticeable 

- He said that ALS does not cause any tingling, numbness etc. He actually showed me in a drawing how ALS works and attacks, and showed me how the area that affects sensory it's outside of that and it's never affected by ALS.

My test went well , he never noticed anything abnormal. He still scheduled an EMG because of the tingling sensations I have been having and numbness. He said he is 99.99 percent sure that I don't have ALS. He said he doesn't like to ever say 100 percent. We also spent a lot of time talking about anxiety, it was clear to him that this was taking a toll on him. I showed him my foot and he examined it and he didn't think there was anything wrong with it. I pointed to him where the tendons stick out more and then he out out his hand and showed me how his stick out as well lol .

Overall I am very satisfied with the visit, he said he has spent sometine of his career dealing with ALS patients. 

My foot it's still a little concerning to me and obviously my numbing and tingling . But after seeing a specialist I am a little more at ease 

Now, we have to wait for the EMG and hope for the best.

Thanks, to all of you. You guys were very supportive and patient with me while I was going through my crisis.

I am not completely over it yet, but I am doing better. 

Did he clarify what exactly “weakness” is?

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4 minutes ago, Iugrad91 said:

So he said pretty much everything Holls and others said 😊 Obviously none of us are doctors and we can’t diagnose anything, but there are some very knowledgeable people on this site with experience dealing with the same fears. It is wise to believe them when they say it’s not ALS.

That is true, they definitely know what they are talking about.

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Just now, A11yance said:

Did he clarify what exactly “weakness” is?

You know what , I missed the opportunity to ask him. He did not 

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1 minute ago, Jremtx said:

@A11yance nope. 

 

Im 1000% sure. 

Ok well I’ll be sure to post results (if they give them to me, does anyone know if they will?) tomorrow. My appointment is at 8am eastern

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@A11yance but do you see what the doctor told him? Pretty much everything we said right? 

 

When you leave your appointment tomorrow, drop the ALS. 

Log off this site and don’t look back. 

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Just now, Jremtx said:

@A11yance but do you see what the doctor told him? Pretty much everything we said right? 

 

When you leave your appointment tomorrow, drop the ALS. 

Log off this site and don’t look back. 

Well I hope the results are shared immediately because I do not want to make and suffer through another appointment. The anxiety of the results would destroy me.

ill have a hard time leaving this site though because I want to help others. There are good people here

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13 minutes ago, A11yance said:

Ok well I’ll be sure to post results (if they give them to me, does anyone know if they will?) tomorrow. My appointment is at 8am eastern

I asked the doctor and he said that yeah. You know the results right away

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1 minute ago, Cubanborn87 said:

I asked the doctor and he said that yeah. You know the results right away

Awesome. If anyone has any additional questions let me know and I can ask tomorrow. I’ll ask about the weakness vs actual weakness

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Cuban, I once had an EMG. They told me right there and then the result which in my case was carpal tunnel.

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2 minutes ago, A11yance said:

Awesome. If anyone has any additional questions let me know and I can ask tomorrow. I’ll ask about the weakness vs actual weakness

That would be good to know, that's the million dollar question for us. 

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3 minutes ago, Bobnnat said:

Cuban, I once had an EMG. They told me right there and then the result which in my case was carpal tunnel.

How can they tell? I’m hoping this is my case as well and how bad does it hurt? Did they just do your arms?

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I really can't remember the details. They can tell because they're specialists and they know what specific response mean or don't mean. I do recall it was uncomfortable, but I'd take that over a deep cleaning at the dentist any day.

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3 hours ago, A11yance said:

Did he clarify what exactly “weakness” is?

He didn't even need to. I'm glad your appointment is tomorrow. You will have your results right away and if you don't then tell them you have high anxiety and need them tomorrow. The neuro would just need to read them for you.. You really need to move past all of this. What time is your appointment?

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Just now, Holls said:

He didn't even need to. I'm glad your appointment is tomorrow. You will have your results right away and if you don't then tell them you have high anxiety and need them tomorrow. The neuro would just need to read them for you.. You really need to move past all of this. What time is your appointment?

It’s at 8am and I know I do I just feel like with all the clear blood work (esr,crp,lab panels) along with my weakness in my forearms and fingers, and everything else, the odds are against me

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