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Ok sorry and thanks I will go to the other forum.
 
Re: Ataxia/tremor in PLS?

Hi all let me say that I do respect and admire all the people here that have ALS and take the time to respond and interact on this forum. I was just wondering exactly what PLS is an prognosis? Is it any different from ALS prognosis? I have a family history of ALS and have been mostly lurking on this forum for almost one month due to me having started with muscle twitches that have continued for the past 3 weeks. I’m 50.
 
Devast-

I have moved the question you posed in a thread in the PLS subforum to here. There is plenty info on the internet about possible prognosis of PLS. The stats say 20+ years. However, that may not be accurate. Is this question made out of idle curiosity or is there a particular concern that brings you to ask the people here? If you are worried you have PLS instead of ALS, the best person to ask is a neurologist to discuss any symptoms you may have.
 
Hi thanks and sorry its a bit confusing for me to navigate this forum.
 
Hello again. It's obvious that you are scared that you might have ALS. I don't think lurking and posting on forums is going to help. I think it will make you more anxious.

Please see a neuro and end the self diagnosis and questions related to ALS and PLS. You live near an excellent ALS facility and you will get all your questions answered there.

I'm so sorry you lost your dad and uncle to ALS.
 
Please listen to Kim. If you can get an appointment with Dr Benatar at U Miami he will give you honest expert kind feedback. He is a world known expert in FALS and has been studying genetic carriers for years. I don’t know if he will see you if you have not been seen by a doctor and found to have worrisome abnormalities on exam but you can call and try.

You may not even have your family mutation. If your symptoms are not ALS you are letting FALS steal your life unnecessarily
 
Hello again. It's obvious that you are scared that you might have ALS. I don't think lurking and posting on forums is going to help. I think it will make you more anxious.

Please see a neuro and end the self diagnosis and questions related to ALS and PLS. You live near an excellent ALS facility and you will get all your questions answered there.

I'm so sorry you lost your dad and uncle to ALS.


Thank Kim yes I will go to a Neurologist just was waiting to see if these twitches would go away on their own but haven’t so I will make an appt.
 
Please listen to Kim. If you can get an appointment with Dr Benatar at U Miami he will give you honest expert kind feedback. He is a world known expert in FALS and has been studying genetic carriers for years. I don’t know if he will see you if you have not been seen by a doctor and found to have worrisome abnormalities on exam but you can call and try.

You may not even have your family mutation. If your symptoms are not ALS you are letting FALS steal your life
unnecessarily

Thank you Nikki, I will try to see Dr Benatar I will call and try. But I have to wait another week to do it cause I have horrible insurance currently and getting remarried to my ex ( yes very uncommon) next week and will get put on his insurance which is way better. Then I will start this ball rolling. Coming to this forum has been good and bad. But all of you are so great for answering us and giving us good advice and reassurance too. Will come back on after I see a Nuero. Thanks again.
 
Congratulations on your impending remarriage!

I am sure you are busy with that but you might call now if you have the time. There is usually a wait to be seen for people like him. If they ask about insurance you can tell them you will have xyz starting next week ( presumably you know or can find out this). They might not ask. My clinic made the appointment and gave me a number to call and register with my insurance information. I just had to do it and get a referral any time before my visit. My visit was almost 2 months after the initial call and I already had an abnormal EMG.
 
Congratulations on your impending remarriage!

I am sure you are busy with that but you might call now if you have the time. There is usually a wait to be seen for people like him. If they ask about insurance you can tell them you will have xyz starting next week ( presumably you know or can find out this). They might not ask. My clinic made the appointment and gave me a number to call and register with my insurance information. I just had to do it and get a referral any time before my visit. My visit was almost 2 months after the initial call and I already had an abnormal EMG.

Oh ok thank you so much! Yes.
 
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