MissyK
Member
- Joined
- Apr 11, 2018
- Messages
- 16
- Reason
- Learn about ALS
- Country
- US
- State
- UT
- City
- Fruit Heights
I was recently told by my internist that I most likely have Myasthenia Gravis, ALS, or something similar. She is not thrilled with my care thus far by my current neurologist and spoke with the chief of Neurology at the University of Utah, who specializes in ALS, MG, EMG, etc. He has agreed to see me but I cant get in until the 19th. The worry of ALS is consuming me. I have been suffering for 8 months so far and my symptoms have evolved quite a bit into what now appears to be mainly neurological. I'm hoping you all can shed some light.
I'm 47 with 4 children... My youngest is almost 3. I can't leave her so early as her siblings are boys and much older (21, 19, and 17).
My symptoms are vast and started in August. By November I was diagnosed with glossopharyngeal neuralgia with my neurological exam appearing normal at that time. Around that same time I began having upper right quadrant pain as well as pain in my chest that radiates into back. Slightly before my GPN diagnosis I was feeling like food was getting stuck while eating. A swallow study revealed that I have esophageal dysmotility.
For the glossopharyngeal neuralgia I was put on oxcarbazepine, which is a drug used for epilepsy. It reduced my pain substantially but caused horrible Tremors and a lot of cognitive issues. I was weaned off of it one month later. My Glassopharyngeal neuralgia pain was not bad enough to be put on Neurontin, like originally planned, once I was off the Oxcarbazepine. After coming off of the oxcarbazepine I still had a horrible Tremors. And then it was found that I had hyper reflexes with some clonus in my left ankle. My tongue was shaky and I had a lot of facial twitches. At this time I assumed these were all lingering side effects from the Oxcarbazepine used to treat my Glossopharyngeal neuralgia and was not worried. I was just thrilled to be rid of the horrendous GPN pain (it is still present but to a much lesser degree... totally tolerable).
fast forward a few months... now not only do I have hyper reflexes with 3 beats clonus in left foot, and tremors, I have a weak tongue by the end of the day and my voice goes hoarse on and off. I also have random twitching. While resting or trying to fall asleep at night I'll feel my legs and feet twitch non stop. Also if I'm super tired or extremely stressed I'll get some facial twitches, particularly around my mouth and my eyebrows.
I've recently noticed my hands and feet being sore with some weakness in my arms and legs. They get shaky fairly fast. Just squatting down to play with my toddler makes my legs shake as if I had been doing tons of squats.
I do not have a droopy eyelid and so far the blood work done for Myasthenia Gravis has back normal with Titin antibodies barely elevated into the intermediate range. This makes me fear ALS even more so.
My brain and cervical spine MRIs done in November were normal. I'm waiting on insurance approval for a repeat brain MRI in addition to a thoracic spine MRI. These were ordered by my existing neurologist, the one who diagnosed me with GPN. She has not ordered an EMG, nerve conduction testing, or spinal tap. She seems to be taking her time, which is why my PCP referred to another neurologist.
My fears is bulbar onset ALS... My voice goes hoarse quite quickly, my tongue is very weak (its difficult to control it when trying to clear food out of my teeth, especially towards evening, my speech seems unaffected when comparing it to the description in the opening post. I have difficulty swallowing and feel it is worse now than it was when I had my swallow study done in December (that test revealed esophogeal dysmotility). My tongue hurts on occasion, like it has been scalded and I have pain under my tongue, kind of in the submandibular salivary glands areas. I get quite phlegmy after I eat.
I Also get winded quite fast and have a lot of pain across my back at the height of my shoulder blades. I wear out extremely fast. If I go to the grocery store, I'm shot for the rest of the day... hoarse voice, weak tongue, shaky, twitches, and pure exhaustion. I just want to lay down and cry.
One last thing I should mention is, I wake in the morning VERY weak and shaky. Once up the shakiness subsides some. If I nap I experience the same shakiness upon waking.
Does anyone with bulbar onset recognize any of these symptoms. I know I have a ton of symptoms... so many that my neurologist referred to me as 'Pandora' s Box'
Thank you for reading such a long post. I'm hopful that I didn't leave many of my symptoms out.
I'm 47 with 4 children... My youngest is almost 3. I can't leave her so early as her siblings are boys and much older (21, 19, and 17).
My symptoms are vast and started in August. By November I was diagnosed with glossopharyngeal neuralgia with my neurological exam appearing normal at that time. Around that same time I began having upper right quadrant pain as well as pain in my chest that radiates into back. Slightly before my GPN diagnosis I was feeling like food was getting stuck while eating. A swallow study revealed that I have esophageal dysmotility.
For the glossopharyngeal neuralgia I was put on oxcarbazepine, which is a drug used for epilepsy. It reduced my pain substantially but caused horrible Tremors and a lot of cognitive issues. I was weaned off of it one month later. My Glassopharyngeal neuralgia pain was not bad enough to be put on Neurontin, like originally planned, once I was off the Oxcarbazepine. After coming off of the oxcarbazepine I still had a horrible Tremors. And then it was found that I had hyper reflexes with some clonus in my left ankle. My tongue was shaky and I had a lot of facial twitches. At this time I assumed these were all lingering side effects from the Oxcarbazepine used to treat my Glossopharyngeal neuralgia and was not worried. I was just thrilled to be rid of the horrendous GPN pain (it is still present but to a much lesser degree... totally tolerable).
fast forward a few months... now not only do I have hyper reflexes with 3 beats clonus in left foot, and tremors, I have a weak tongue by the end of the day and my voice goes hoarse on and off. I also have random twitching. While resting or trying to fall asleep at night I'll feel my legs and feet twitch non stop. Also if I'm super tired or extremely stressed I'll get some facial twitches, particularly around my mouth and my eyebrows.
I've recently noticed my hands and feet being sore with some weakness in my arms and legs. They get shaky fairly fast. Just squatting down to play with my toddler makes my legs shake as if I had been doing tons of squats.
I do not have a droopy eyelid and so far the blood work done for Myasthenia Gravis has back normal with Titin antibodies barely elevated into the intermediate range. This makes me fear ALS even more so.
My brain and cervical spine MRIs done in November were normal. I'm waiting on insurance approval for a repeat brain MRI in addition to a thoracic spine MRI. These were ordered by my existing neurologist, the one who diagnosed me with GPN. She has not ordered an EMG, nerve conduction testing, or spinal tap. She seems to be taking her time, which is why my PCP referred to another neurologist.
My fears is bulbar onset ALS... My voice goes hoarse quite quickly, my tongue is very weak (its difficult to control it when trying to clear food out of my teeth, especially towards evening, my speech seems unaffected when comparing it to the description in the opening post. I have difficulty swallowing and feel it is worse now than it was when I had my swallow study done in December (that test revealed esophogeal dysmotility). My tongue hurts on occasion, like it has been scalded and I have pain under my tongue, kind of in the submandibular salivary glands areas. I get quite phlegmy after I eat.
I Also get winded quite fast and have a lot of pain across my back at the height of my shoulder blades. I wear out extremely fast. If I go to the grocery store, I'm shot for the rest of the day... hoarse voice, weak tongue, shaky, twitches, and pure exhaustion. I just want to lay down and cry.
One last thing I should mention is, I wake in the morning VERY weak and shaky. Once up the shakiness subsides some. If I nap I experience the same shakiness upon waking.
Does anyone with bulbar onset recognize any of these symptoms. I know I have a ton of symptoms... so many that my neurologist referred to me as 'Pandora' s Box'
Thank you for reading such a long post. I'm hopful that I didn't leave many of my symptoms out.