aschatzman
New member
- Joined
- Jun 16, 2016
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- VA
- City
- Ashburn
I’m female- 40 Yrs old and sorry in advance for the long story.
About 3 years ago at the age of 37, I started feeling heaviness in my shoulders while doing very little, then calves would cramp up for days. Then fasciculations started in arms, legs, and feet and eventually in various other spots. Then leg weakness started (R leg in particular), along with weight loss and weakened grip strength in left hand in particular. Went through testing and vigorous PT & OT after the hospital and was able to put some weight back on and walk around and slowly get back to work.
Over the past 3 years, I have been struggling with the worst fatigue of my life, relentless muscle twitching all over and at random (shoulders, upper arms, chest, stomach, back, glutes, legs and feet). Also feeling like my gait was a bit stiff/off and have had other symptoms pop up like pain and stiffness in hands and fingers to where I couldn’t move them for a few days. I saw doctor and mentioned pain in my neck, shoulder, and back, and widespread chronic twitching. I also noticed the sides of my thighs (esp right) looking different/flatter. I complained of weakness predominantly from left shoulder down to hand.
This year from January to end of May, I have been walking more stiffly. Others have noticed my voice becoming softer with fatigue. I have felt generally unwell. Not one day in 3+ years without fasciculations occurring throughout day. I continued to feel weak and with ongoing pain in neck shoulders and back. At work noticed back of my legs and glutes were starting to feel different, less muscle against chair while sitting.
One day eating normal food, I felt it getting stuck in chest going down. Some pain and weakness in right wrist and difficulty typing at work. Then started having more trouble writing with R hand. Started noticing I was getting out of breath easily not doing much at all and took some time to recover. Also pain and trouble with stomach started and getting overheated to the point of sweating in mornings/sleeping.
By the end of May, I woke up with very stiff heavy legs which made getting around very difficult. Pain/sore feeling in upper thighs as well. Stiffness seemed to subside after a few days however progressively weak since. Beginning June, I was in PT twice a week and doing exercises at home for shoulders, neck and back but instead progressively weakened and developed muscle loss in shoulders, tricep area and back. I noticed it when I questioned why my shoulders were weakening. I got to a point towards end of June where I couldn’t do simple stuff and PT said something medical going on.
My hands for the first time shook like crazy, shoulders and arms as well trying to take a grip strength test which is very weak now compared to last year.
*Things have been progressing quickly since June now. Despite always being active before and attempting exercise I have been losing muscle in shoulders, arms, right hand looks flatter and weak wrist and hands. Dropping and hard time holding phone even.
Muscle loss in glutes, side of glutes, thighs, hip and pelvic area is alarming and making attempts at walking very stiff, awkward, and feels awful. Hips don’t hold me like they use to. Less muscle trying to go the bathroom as well. Began losing muscle in diaphragm and abdominal area and with that came increasing difficulty and tightness breathing.
With weak shoulders and hands, constant shaking and fatigue trying to pick up utensils even. Fasciculations have worsened and started experiencing involuntary movement in shoulder/upper arm area, legs while trying to fall asleep at night -a jerking type movement. Legs are barely now carrying me far and are shaking pretty bad if sitting down and attempt to lift one up. Noticing bottom of calves getting smaller, overall soft muscles in body. Knees and R ankle are starting to feel weakness.
*Scary new and worsening symptoms are also my voice weakening quite a bit now and singing that I used to enjoy even earlier this year is near impossible now. Toothpaste has been running down my throat and gagging on it, coughing and almost throwing up every time. My chewing has weakened taking far more time to eat what I normally could have quickly. Throat feels strange like something stuck and what used to be mainly food feeling it going down is the same with liquids now. Almost uncomfortable to eat or drink with the feeling of it going down and some tightness and gurgling/pain and reflux in stomach/throat/chest.
Lips have weakened, tongue a bit. Facial muscles feel less around outside of jaw and shake around cheeks and eyes when trying to smile/hold up cheeks/side of mouth and around eyes. Trying to close one eye at a time used to be easy and now the muscles are making it hard to do. Jaw gets stiff and also pain in face with movement.
My reflexes in knees have become more brisk and I have also been experiencing a very heightened shock like nerve thing in my body with any sudden noise or stress -startle response.
My body is failing me from head to toe and I’m terrified. I’ve been in and out of Drs offices and ER’s over the past month and a half now with no answers, meanwhile everything is worsening. I haven’t been able to work or drive since June. Lost my job and possibly health insurance without a diagnosis.
*Tests I have had done have been full workup with Rheumatology, MRI’s, Xrays, full bloodwork to check for CK, Myositis, Myasthenia G, etc.
I’ve seen multiple Neurologists in the past 2 months. They didn’t see me before this progressed faster and have no base line to go on. I feel I messed up not following the same doctor. They have felt soft muscles, notated weakness, voice and all, some brisk reflexes, but state no baseline for muscle loss and some things look just out of shape for my age which is infuriating.
Despite noting these things and seeing how I can barely walk, they are basing everything on another’s EMG. Here is the problem I’m running into:
I had one EMG 3 years ago right when this started on a mild level, went back to same place and had a second one beginning of this July, then a different Doctor (Hopkins) end of July. They didn’t see anything suspicious! Not even fasciculations and they are chronic, some visible some not. They sometimes don’t happen long enough aside from feet for me to get video of it or I don’t have phone nearby. They also happen quickly in Drs appt and they haven’t been able to see them yet.
Now I’m trying to get into the Mayo Clinic in MN because I’m doing so poorly! and can’t wait months for another Hopkins appt just to potentially have another regular EMG. I have read EMG has a 60-70% window to pick up MND, and Doctors confirm it’s not 100% and they can also miss things on exam. Apparently ultrasound of the muscles can find ALS? Although I haven’t found a Dr who does it yet.
Things are worsening/happening over days now. I’m going downhill: Breathing, swallowing, speaking, legs, arms, etc. My diaphragm muscles are so tight and I have been in ER literally feeling like this is it for me. I’m not getting any help from medical because of the EMG. This has been the absolute most stressful nightmare of my life, trying to mentally prepare for the worst. I have sick pets at home I can barely take care of any more and I feel I’m losing everyone and everything I love in my life. I had so much I was looking forward to.
Please tell me what to do! How can I have of all this without it showing up on EMG? I have no idea what to do as I’m literally falling apart physically and now mentally and not getting any help. I also don’t have much family and no one to really help me. I want to cry but my muscles are too weak. Perhaps Mayo, since no one on East Coast seems to care or be able to help. I also know nothing can be done if this is what I have and it has been a slow progression over time. Please any advice, answers, input as to my symptoms and all.
About 3 years ago at the age of 37, I started feeling heaviness in my shoulders while doing very little, then calves would cramp up for days. Then fasciculations started in arms, legs, and feet and eventually in various other spots. Then leg weakness started (R leg in particular), along with weight loss and weakened grip strength in left hand in particular. Went through testing and vigorous PT & OT after the hospital and was able to put some weight back on and walk around and slowly get back to work.
Over the past 3 years, I have been struggling with the worst fatigue of my life, relentless muscle twitching all over and at random (shoulders, upper arms, chest, stomach, back, glutes, legs and feet). Also feeling like my gait was a bit stiff/off and have had other symptoms pop up like pain and stiffness in hands and fingers to where I couldn’t move them for a few days. I saw doctor and mentioned pain in my neck, shoulder, and back, and widespread chronic twitching. I also noticed the sides of my thighs (esp right) looking different/flatter. I complained of weakness predominantly from left shoulder down to hand.
This year from January to end of May, I have been walking more stiffly. Others have noticed my voice becoming softer with fatigue. I have felt generally unwell. Not one day in 3+ years without fasciculations occurring throughout day. I continued to feel weak and with ongoing pain in neck shoulders and back. At work noticed back of my legs and glutes were starting to feel different, less muscle against chair while sitting.
One day eating normal food, I felt it getting stuck in chest going down. Some pain and weakness in right wrist and difficulty typing at work. Then started having more trouble writing with R hand. Started noticing I was getting out of breath easily not doing much at all and took some time to recover. Also pain and trouble with stomach started and getting overheated to the point of sweating in mornings/sleeping.
By the end of May, I woke up with very stiff heavy legs which made getting around very difficult. Pain/sore feeling in upper thighs as well. Stiffness seemed to subside after a few days however progressively weak since. Beginning June, I was in PT twice a week and doing exercises at home for shoulders, neck and back but instead progressively weakened and developed muscle loss in shoulders, tricep area and back. I noticed it when I questioned why my shoulders were weakening. I got to a point towards end of June where I couldn’t do simple stuff and PT said something medical going on.
My hands for the first time shook like crazy, shoulders and arms as well trying to take a grip strength test which is very weak now compared to last year.
*Things have been progressing quickly since June now. Despite always being active before and attempting exercise I have been losing muscle in shoulders, arms, right hand looks flatter and weak wrist and hands. Dropping and hard time holding phone even.
Muscle loss in glutes, side of glutes, thighs, hip and pelvic area is alarming and making attempts at walking very stiff, awkward, and feels awful. Hips don’t hold me like they use to. Less muscle trying to go the bathroom as well. Began losing muscle in diaphragm and abdominal area and with that came increasing difficulty and tightness breathing.
With weak shoulders and hands, constant shaking and fatigue trying to pick up utensils even. Fasciculations have worsened and started experiencing involuntary movement in shoulder/upper arm area, legs while trying to fall asleep at night -a jerking type movement. Legs are barely now carrying me far and are shaking pretty bad if sitting down and attempt to lift one up. Noticing bottom of calves getting smaller, overall soft muscles in body. Knees and R ankle are starting to feel weakness.
*Scary new and worsening symptoms are also my voice weakening quite a bit now and singing that I used to enjoy even earlier this year is near impossible now. Toothpaste has been running down my throat and gagging on it, coughing and almost throwing up every time. My chewing has weakened taking far more time to eat what I normally could have quickly. Throat feels strange like something stuck and what used to be mainly food feeling it going down is the same with liquids now. Almost uncomfortable to eat or drink with the feeling of it going down and some tightness and gurgling/pain and reflux in stomach/throat/chest.
Lips have weakened, tongue a bit. Facial muscles feel less around outside of jaw and shake around cheeks and eyes when trying to smile/hold up cheeks/side of mouth and around eyes. Trying to close one eye at a time used to be easy and now the muscles are making it hard to do. Jaw gets stiff and also pain in face with movement.
My reflexes in knees have become more brisk and I have also been experiencing a very heightened shock like nerve thing in my body with any sudden noise or stress -startle response.
My body is failing me from head to toe and I’m terrified. I’ve been in and out of Drs offices and ER’s over the past month and a half now with no answers, meanwhile everything is worsening. I haven’t been able to work or drive since June. Lost my job and possibly health insurance without a diagnosis.
*Tests I have had done have been full workup with Rheumatology, MRI’s, Xrays, full bloodwork to check for CK, Myositis, Myasthenia G, etc.
I’ve seen multiple Neurologists in the past 2 months. They didn’t see me before this progressed faster and have no base line to go on. I feel I messed up not following the same doctor. They have felt soft muscles, notated weakness, voice and all, some brisk reflexes, but state no baseline for muscle loss and some things look just out of shape for my age which is infuriating.
Despite noting these things and seeing how I can barely walk, they are basing everything on another’s EMG. Here is the problem I’m running into:
I had one EMG 3 years ago right when this started on a mild level, went back to same place and had a second one beginning of this July, then a different Doctor (Hopkins) end of July. They didn’t see anything suspicious! Not even fasciculations and they are chronic, some visible some not. They sometimes don’t happen long enough aside from feet for me to get video of it or I don’t have phone nearby. They also happen quickly in Drs appt and they haven’t been able to see them yet.
Now I’m trying to get into the Mayo Clinic in MN because I’m doing so poorly! and can’t wait months for another Hopkins appt just to potentially have another regular EMG. I have read EMG has a 60-70% window to pick up MND, and Doctors confirm it’s not 100% and they can also miss things on exam. Apparently ultrasound of the muscles can find ALS? Although I haven’t found a Dr who does it yet.
Things are worsening/happening over days now. I’m going downhill: Breathing, swallowing, speaking, legs, arms, etc. My diaphragm muscles are so tight and I have been in ER literally feeling like this is it for me. I’m not getting any help from medical because of the EMG. This has been the absolute most stressful nightmare of my life, trying to mentally prepare for the worst. I have sick pets at home I can barely take care of any more and I feel I’m losing everyone and everything I love in my life. I had so much I was looking forward to.
Please tell me what to do! How can I have of all this without it showing up on EMG? I have no idea what to do as I’m literally falling apart physically and now mentally and not getting any help. I also don’t have much family and no one to really help me. I want to cry but my muscles are too weak. Perhaps Mayo, since no one on East Coast seems to care or be able to help. I also know nothing can be done if this is what I have and it has been a slow progression over time. Please any advice, answers, input as to my symptoms and all.
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