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Frank Benincasa

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@frankbeni

I had my 2nd EMG 2 weeks ago and this one was clear also. Meanwhile my symptoms continually increase and new ones arrive. I can no longer sleep in bed due to poor breathing. I use a recliner half way down and have trouble standing up when I raise it. I use a walker around the house because of several falls and unsteadiness. I can no longer open […] View
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    Frank Benincasa posted an update 3 months, 2 weeks ago

    I had my 2nd EMG 2 weeks ago and this one was clear also. Meanwhile my symptoms continually increase and new ones arrive. I can no longer sleep in bed due to poor breathing. I use a recliner half way down and have trouble standing up when I raise it. I use a walker around the house because of several falls and unsteadiness. I can no longer open a…[Read more]

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    Frank Benincasa started the topic Help with what to ask my doctor in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 7 months ago

    I went to a Neuro doc last week, having bulbar symptoms (swallowing, breathing, speech, saliva, etc. along with twitches, cramps and stiffness) and his physical exam was normal. He sent me for an EMG which I did this morning and that was normal. Doc doing test said that he just checks the limbs on the order for the right side of the body and…[Read more]

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    Frank Benincasa posted an update 1 year, 7 months ago

    Do you think about God? I finds myself reading bible passages, praying and asking for forgiveness for not only what I’ve done wrong in my life but also not doing right. Strange that about 3 years ago, still in great health I started thinking about God, the afterlife,etc. To me, even more important how we die is how we live. I’ve been a mus…[Read more]

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    Frank Benincasa replied to the topic Do people treat you differently because of ALS? in the forum Living With ALS 1 year, 7 months ago

    Well said

  • Profile picture of Frank Benincasa

    Frank Benincasa replied to the topic Do people treat you differently because of ALS? in the forum Living With ALS 1 year, 7 months ago

    I haven’t been diagnosed yet but have many symptoms and it’s “early”. Today I had to go to the supermarket for a prescription and Walked very slowly and had to muster some strength to speak to the pharmacist. I thought exactly about your question. People have to see how I walk, how I talk and what will happen in the coming months. I guess the ans…[Read more]

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    Frank Benincasa replied to the topic Coming to terms with your diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 7 months ago

    I know. I usually wake up at around 3 AM with those 3 letters my first thought. It’s good to have someone to talk to, even strangers on a forum.

  • Profile picture of Frank Benincasa

    Frank Benincasa replied to the topic Coming to terms with your diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 7 months ago

    I did that early. Thought my fatigue was adrenal and thyroid related. I take thyroid meds. Also thought breathing issue was thyroid related or maybe a return of Asthma I had years ago. I thought maybe the food getting stuck was due to approaching 70 after all things happen when you get old. I had already looked up some symptoms and when I started…[Read more]

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    Frank Benincasa replied to the topic Coming to terms with your diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 7 months ago

    I’m going through this right now. I have an appt with neuro next week, but feel I already know. Fatigue, swallowing,(food getting stuck and choked badly 2 weeks ago),hoarse or no voice, short breath, twitching, tightness and cramps which get worse every single day, joint pain, plantar fasciitis in both feet (probably from tight calf muscles), d…[Read more]

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    Frank Benincasa posted an update 1 year, 9 months ago

    I started twitching last Thursday basically everywhere all at once with jerks and cramps. I have NO other symptoms. I can open jars, carry bags, tie shoes, no trouble with stairs, etc. I have a preliminary dx of Cushings Disease due to high ACTH and cortisol levels. I’m finally seeing an Endocronologist next week for more tests and likely an MRI o…[Read more]

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    Frank Benincasa became a registered member 1 year, 9 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 9 months ago

      Hello Frank,

      Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]

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