sunnyfromtexas
New member
- Joined
- Jul 25, 2022
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Good morning all,
It seems ridiculous for me to post and I honestly have no idea why I am, but here goes...
In April, I was sitting in the back yard and pointed to something and felt a shooting pain up my right arm, a week later at work I started having ice pick headaches so naturally I end up at my GP who sends me for a MRI and I had two mildly herniated discs. No worries, heal up from that, but... I didn't. MRIs of brain, cervical spine and lumbar are all unremarkable now. Appointments with ortho and neurosurgeon all good minus some uneven weakness and muted reflexes on my left side.
I am still experiencing progressive worsening symptoms... I get referred to neurologist.
Neurologist spends an hour and half with strength tests, push pull, balance, vision, tip toes, heels, etc. Finds a loss of peripheral vision, possibly photosensitivity, marked weakness in grip and muscle on left side - ankle, shoulder, elbow, etc. and is concerned how my tongue twitches and pulls to one side. (Didn't even know that was a thing??...)
Extensive labs with 24 urinalysis to include antibody panels, metabolic, liver, CK, all of it.... Receive a message from the neurologist's office - all good, maybe my cholesterol is a little high. You do not have myasthenia gravis.
Orders NCS/EMG. Another neurologist does the NCS and RNS and says "I know what it is! (excitedly) but I have to do the EMG."
Does the EMG.
"You have myasthenia gravis! There is no neuropathy or myopathy"
"But my labs were negative?"
"That can happen in some cases"
"So no ALS?"
"No, myasthenia gravis!"
Ok, so I am relieved! He brings in my neurologist and she takes a look, he seems like he is trying to convince her, pointing. She looks at me stoically, does not confirm the diagnosis of MG, and says "we will discuss at your appointment after I review the results." Ok, so that wasn't heartening, but at least I have an answer and don't have to be scared sh*tless.
I go home, tell my husband, we look it up, it makes sense so whew! Then he asks is that why your left side is so much smaller that your right and all your muscles are atrophying. Me, just noticing the fatigue and weakness, starts a physical inventory and sure enough. My calf, thigh, buttock, chest/breast, hand, forearm and bicep are all significantly smaller, my shoulder drops. In the last few days, I have started tripping on basically everything. Where I did have some energy and strength in the morning, is now almost gone. It takes so much effort just to eat.... I have lost 20-25 pounds in a few months. My ankles are weak to where my feet are slapping the ground, I feel like I almost have to drag my damn leg sometimes. I can't seem to catch my breath.
I look back now and at the beginning of the year is when the issues in my left leg started just a little bit and I didn't even mind the twitches and cramps in random muscles.. I figured it was just getting old... I don't have any biological family close enough in relation to determine genetic possibilities right away.
Anyways, I'm not looking for a diagnosis from ya'll. You all have enough going on. I have my follow up appointment at 3:30 today. I don't know what to expect. I don't want anyone to go with me. I just want to know what in the hell is going on and why. I have to have some help, medication, a plan, information, just something....
It seems ridiculous for me to post and I honestly have no idea why I am, but here goes...
In April, I was sitting in the back yard and pointed to something and felt a shooting pain up my right arm, a week later at work I started having ice pick headaches so naturally I end up at my GP who sends me for a MRI and I had two mildly herniated discs. No worries, heal up from that, but... I didn't. MRIs of brain, cervical spine and lumbar are all unremarkable now. Appointments with ortho and neurosurgeon all good minus some uneven weakness and muted reflexes on my left side.
I am still experiencing progressive worsening symptoms... I get referred to neurologist.
Neurologist spends an hour and half with strength tests, push pull, balance, vision, tip toes, heels, etc. Finds a loss of peripheral vision, possibly photosensitivity, marked weakness in grip and muscle on left side - ankle, shoulder, elbow, etc. and is concerned how my tongue twitches and pulls to one side. (Didn't even know that was a thing??...)
Extensive labs with 24 urinalysis to include antibody panels, metabolic, liver, CK, all of it.... Receive a message from the neurologist's office - all good, maybe my cholesterol is a little high. You do not have myasthenia gravis.
Orders NCS/EMG. Another neurologist does the NCS and RNS and says "I know what it is! (excitedly) but I have to do the EMG."
Does the EMG.
"You have myasthenia gravis! There is no neuropathy or myopathy"
"But my labs were negative?"
"That can happen in some cases"
"So no ALS?"
"No, myasthenia gravis!"
Ok, so I am relieved! He brings in my neurologist and she takes a look, he seems like he is trying to convince her, pointing. She looks at me stoically, does not confirm the diagnosis of MG, and says "we will discuss at your appointment after I review the results." Ok, so that wasn't heartening, but at least I have an answer and don't have to be scared sh*tless.
I go home, tell my husband, we look it up, it makes sense so whew! Then he asks is that why your left side is so much smaller that your right and all your muscles are atrophying. Me, just noticing the fatigue and weakness, starts a physical inventory and sure enough. My calf, thigh, buttock, chest/breast, hand, forearm and bicep are all significantly smaller, my shoulder drops. In the last few days, I have started tripping on basically everything. Where I did have some energy and strength in the morning, is now almost gone. It takes so much effort just to eat.... I have lost 20-25 pounds in a few months. My ankles are weak to where my feet are slapping the ground, I feel like I almost have to drag my damn leg sometimes. I can't seem to catch my breath.
I look back now and at the beginning of the year is when the issues in my left leg started just a little bit and I didn't even mind the twitches and cramps in random muscles.. I figured it was just getting old... I don't have any biological family close enough in relation to determine genetic possibilities right away.
Anyways, I'm not looking for a diagnosis from ya'll. You all have enough going on. I have my follow up appointment at 3:30 today. I don't know what to expect. I don't want anyone to go with me. I just want to know what in the hell is going on and why. I have to have some help, medication, a plan, information, just something....