lookingforanswers
New member
- Joined
- Apr 28, 2014
- Messages
- 2
- Reason
- CALS
- Country
- US
- State
- ri
- City
- warwick
I would appreciate any guidance or feedback on my moms (age 54) current possible ALS diagnosis. It started for her shortly after a routine mammogram in September 2013, in which she was left in a lot of pain and started having painful brain zaps (which she received medicine for). She has had these brain zaps before as well as horrible vertigo in the past. About a week later she noticed her left hand thumb was twitching and then the next morning her left hand was weak. She could not hold certain things, and knew something was different. At work, she was typing all day, so assumed it was carpal tunnel and then possibly a pinched nerve or damage from her mammogram. She stopped using the left hand as much as she could and bought a brace, thinking rest would help. At this time she went to see a neurologist for the brain zaps initially, but mentioned her weak hand as well while she was there, and he did tests to eliminate the possibility of a pinched nerve or carpal tunnel.
He mentioned ALS was a possibility but told her to see another specialist, she so did. The next neurologist did an EMG in which she "failed" and there was no conduction block noted. But they did give her IVIG treatments, two weeks worth over two months, to rule out multi focal, because at the time her bloodwork indicted higher levels then normal of antibodies. The IVIG did not do much other then help her energy level. Her hand at this point was curling and weak and stiff (probably didn't help she wasn't using it often). This was in December 2013, and since then the puffy fingers and swelling STILL remains (despite soaking, elevating, or massaging), and she can no longer straighten any of her fingers. She has thenar muscle atrophy for sure, as well. She now goes to PT weekly and wears a brace to help straighten them.
She went to another neurologist, this time at Mass General, and had another EMG (failed) MRI on neck and spine (normal) and some blood work for HIV, copper, lyme, and another one for antibodies (check for autoimmune). ALL blood tests came back clean this time, with no elevated levels of antibodies. Recently, her other hand has grown weaker, she can still tap out her fingers and hold things, but she know its weaker, and not just from fatigue due to having one hand.
At this point it seems like a cruel waiting game, the doctors have not diagnosed her officially, but they are out of suggestions... In addition she has twitching (nothing major but she can feel it), hyper reflexes (but in ALL her joints/ligaments) and no Babinski sign or other areas of weakness besides hands/arm. She is also very tired and achy, all of her joints hurt especially in the fingers and her left shoulder, and she has some sort of popping occurring when you put pressure/massage her palm (PT thought possible scar tissue). When she opens and closes her "good" right hand, you can see the fingers click down as they curl, like they are locking slightly, if that makes sense? Her hands sound very arthritic, but she does not want to see a rheumatologist because of her EMG's and doctors thinking it is not autoimmune.
I am sorry for anyone who has to go through this, and we are beginning to adjust, but I just wanted some opinions if possible, because I feel her ALS path is not as typical. Thank you.
He mentioned ALS was a possibility but told her to see another specialist, she so did. The next neurologist did an EMG in which she "failed" and there was no conduction block noted. But they did give her IVIG treatments, two weeks worth over two months, to rule out multi focal, because at the time her bloodwork indicted higher levels then normal of antibodies. The IVIG did not do much other then help her energy level. Her hand at this point was curling and weak and stiff (probably didn't help she wasn't using it often). This was in December 2013, and since then the puffy fingers and swelling STILL remains (despite soaking, elevating, or massaging), and she can no longer straighten any of her fingers. She has thenar muscle atrophy for sure, as well. She now goes to PT weekly and wears a brace to help straighten them.
She went to another neurologist, this time at Mass General, and had another EMG (failed) MRI on neck and spine (normal) and some blood work for HIV, copper, lyme, and another one for antibodies (check for autoimmune). ALL blood tests came back clean this time, with no elevated levels of antibodies. Recently, her other hand has grown weaker, she can still tap out her fingers and hold things, but she know its weaker, and not just from fatigue due to having one hand.
At this point it seems like a cruel waiting game, the doctors have not diagnosed her officially, but they are out of suggestions... In addition she has twitching (nothing major but she can feel it), hyper reflexes (but in ALL her joints/ligaments) and no Babinski sign or other areas of weakness besides hands/arm. She is also very tired and achy, all of her joints hurt especially in the fingers and her left shoulder, and she has some sort of popping occurring when you put pressure/massage her palm (PT thought possible scar tissue). When she opens and closes her "good" right hand, you can see the fingers click down as they curl, like they are locking slightly, if that makes sense? Her hands sound very arthritic, but she does not want to see a rheumatologist because of her EMG's and doctors thinking it is not autoimmune.
I am sorry for anyone who has to go through this, and we are beginning to adjust, but I just wanted some opinions if possible, because I feel her ALS path is not as typical. Thank you.
