Tms1978
New member
- Joined
- Dec 3, 2016
- Messages
- 9
- Reason
- Learn about ALS
- Country
- US
- State
- Mass
- City
- Boston
Dear all, ty in advance for taking the time to read my thread, i appreciate it. I'm very ill with little to no answer why. My symptoms began in feb. 2014 with a major panic attack followed by the unleashing of several symptoms- back of the head pressure, trouble swallowing, ears feeling blocked, chest pressure, rib soreness, tingling in arms and hands, twitching, jaw ache, hard to chew, neck soreness, constant burping. I had a TON of testing done including 2 neuro exams one of them was with an als neurologist at the MGH ALS clinic in Boston. She said this was not the way ALS presents. After spinal tap, emg and everything else I had no diagnosis. I continued to decline until I went on Iv rocephin for 2 months and then shortly after either went into some type of remission or reversal. I did have some residual symptoms like pins and needles and twitching, muscle fatigue but I was able to return to most of my normal activity. This was June 2015.
I became pregnant and had my daughter July 2016, healthy pregnancy no issues. 4 weeks postpartum symptoms began to resurface and have been relentless ever since. There is definitely progression. There is twitching everywhere including rib cage. Whatever muscle I use just a little then twitches and feels weak. Pins and needles/burning feeling in mid back/rib cage area which wraps around to my diaphragm area which is where I have been getting sharp pains at certain times when I breathe in. At first, it was just after a strenuous activity like a walk or a jog (very minimal) but now it is everyday. My o2 sat is at 98 but I'm not sure of my co2. I also have constant burping all day like there is a ton of excessive/trapped air.
Also have very very stiff joints, specifically my knees. I have to ease out of bed in the am, my legs are so stiff. My jaw all the way up to my ear also feels stiff. One side of my face will sometimes feel numb. My hands and feet often go numb. My abilty to move around is limited due to stiffness. My knees feel like they are carrying too much weight.
My fingers and other parts of my body jerk randomly.
Constantly feel dehydrated
Feel lots of pressure on my chest when laying down, I usually now sleep somewhat upright.
I can still button a shirt but my hands feel weak.
I had another emg done at the ALS clinic a month ago that came back normal. I'm scheduled to get another opinion at the Lahey clinic/neurology in Burlington ma in February.
Your thoughts on possible ALS would be greatly greatly appreciated. TY
I became pregnant and had my daughter July 2016, healthy pregnancy no issues. 4 weeks postpartum symptoms began to resurface and have been relentless ever since. There is definitely progression. There is twitching everywhere including rib cage. Whatever muscle I use just a little then twitches and feels weak. Pins and needles/burning feeling in mid back/rib cage area which wraps around to my diaphragm area which is where I have been getting sharp pains at certain times when I breathe in. At first, it was just after a strenuous activity like a walk or a jog (very minimal) but now it is everyday. My o2 sat is at 98 but I'm not sure of my co2. I also have constant burping all day like there is a ton of excessive/trapped air.
Also have very very stiff joints, specifically my knees. I have to ease out of bed in the am, my legs are so stiff. My jaw all the way up to my ear also feels stiff. One side of my face will sometimes feel numb. My hands and feet often go numb. My abilty to move around is limited due to stiffness. My knees feel like they are carrying too much weight.
My fingers and other parts of my body jerk randomly.
Constantly feel dehydrated
Feel lots of pressure on my chest when laying down, I usually now sleep somewhat upright.
I can still button a shirt but my hands feel weak.
I had another emg done at the ALS clinic a month ago that came back normal. I'm scheduled to get another opinion at the Lahey clinic/neurology in Burlington ma in February.
Your thoughts on possible ALS would be greatly greatly appreciated. TY
