tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
Since my diagnosis (and before when it was hinted at) I have been trying to figure out what to expect and at what time interval. It has been extremely frustrating as all I can find are VERY broad generalities due to the nature of ALS. My symptoms began as follows;
May 2013 lower pack pain (stopped me from triathloning)
July 2013 Shortness of breath and fatigue, laryngitis
August 2014 Left Hand pain and weakness
September massive amount of leg and hand fasciculations and cramps
October 2014 right hand and left lower leg pain and weakness
November 2014 Abdomen and back cramps and fasciculations
December 2014 ALS diagnosis after a year and a half of many different doctors
My ALS doc (Dr Pulley Jacksonville, Fl) seemed confused by the shortness of breath which seems to have "plateaued" in late 2013. I do have a lot of mucus with it that I have assumed to be allergy related since moving to Georgia from Pennsylvania (we will be going back to PA so my wife can have the support of her family). I have always lost me voice when I get sick, but now it seems to happen when ever I run out of breath which can happen if I carry groceries into the house. I have read that mucus is a problem with ALS. Am I seeing bulbar symptoms?
Also I show very little muscle wasting but have positive EMG signs of active and long term muscle denervation in all 5 regions, how long before muscle groups become unusable? Since my left hand problems began in August it is clumsy and can not grip well but still works.
I have almost no upper motor symptoms (some slight reflex signs) and so the doctor implied that I might have a slower "version" of ALS. He wants to see me again in three months to give me an estimated time line on how the disease might progress. But it is frustrating not knowing what is going on.
I see another doctor at Emory in GA in a few hours for a second opinion. We will ask him questions but everyone seems reluctant to give any specific information. This makes it very difficult to know how to plan for things.
May 2013 lower pack pain (stopped me from triathloning)
July 2013 Shortness of breath and fatigue, laryngitis
August 2014 Left Hand pain and weakness
September massive amount of leg and hand fasciculations and cramps
October 2014 right hand and left lower leg pain and weakness
November 2014 Abdomen and back cramps and fasciculations
December 2014 ALS diagnosis after a year and a half of many different doctors
My ALS doc (Dr Pulley Jacksonville, Fl) seemed confused by the shortness of breath which seems to have "plateaued" in late 2013. I do have a lot of mucus with it that I have assumed to be allergy related since moving to Georgia from Pennsylvania (we will be going back to PA so my wife can have the support of her family). I have always lost me voice when I get sick, but now it seems to happen when ever I run out of breath which can happen if I carry groceries into the house. I have read that mucus is a problem with ALS. Am I seeing bulbar symptoms?
Also I show very little muscle wasting but have positive EMG signs of active and long term muscle denervation in all 5 regions, how long before muscle groups become unusable? Since my left hand problems began in August it is clumsy and can not grip well but still works.
I have almost no upper motor symptoms (some slight reflex signs) and so the doctor implied that I might have a slower "version" of ALS. He wants to see me again in three months to give me an estimated time line on how the disease might progress. But it is frustrating not knowing what is going on.
I see another doctor at Emory in GA in a few hours for a second opinion. We will ask him questions but everyone seems reluctant to give any specific information. This makes it very difficult to know how to plan for things.