elysse8
New member
- Joined
- Aug 10, 2015
- Messages
- 6
- Reason
- Learn about ALS
- Country
- US
- State
- CA
- City
- Clovis
I just turned 32 yesterday. I am a mother of a 2 year old.
I can't believe this is happening, but I need support and want to get a diagnosis.
Here's where I am so far...
It started with feeling weak in my right leg and getting muscle twitches and fasciculations all over, mostly in that right leg. My arms felt weak. I started to notice that wherever a nerve felt like it was dying I would get a little discoloration outline and numbness. I am having muscle atrophy. All of which the doctors can't see so I feel like they are dismissing these last two symptoms. I know my body and I can see the atrophy and discoloration. I feel like little popping near my abdomen also.
About a week into these symptoms, I started to have a feeling of a little lump in my throat. Little by little in the matter of a month, that lump has turned into a feeling of my muscles near my throat atrophying and becoming weak. I feel like it's becoming harder to swallow, but I am getting the food down. I lost about 20 lbs. in a month.
I've done all the tests to rule everything else out. Everything negative. EMG/NCS came back clean. Not sure if that even matters since this disease is progressive. The Neurologists at Sansum Clinic In Santa Barbara have said this doesn't sound like ALS, I would worry about something else. One neuro is attributing that statement to never seeing any ALS patients coming in for muscle twitches first. The other neuro is saying that most ALS bulbar onset patients don't have any pre-cursors to their bulbar symptoms like I'm having.....isn't feeling muscles weakening and lump in throat getting worse a bulbar symptom?
The only test that has come back abnormal is an EEG. The doc is reading that today. I feel like the progression is happening too fast. I know it hits everyone differently, but could it be hitting my entire body this fast? I feel like it started out with my leg muscles feeling weak, but could it be that it was bulbar onset all along?
I need answers and feel like a diagnosis is taking too long. Friends and family are saying to thing positive and it could be anything. Well, the tests have all come back negative. I feel like anything else it could have been is out the door.
Lost and scared.
I can't believe this is happening, but I need support and want to get a diagnosis.
Here's where I am so far...
It started with feeling weak in my right leg and getting muscle twitches and fasciculations all over, mostly in that right leg. My arms felt weak. I started to notice that wherever a nerve felt like it was dying I would get a little discoloration outline and numbness. I am having muscle atrophy. All of which the doctors can't see so I feel like they are dismissing these last two symptoms. I know my body and I can see the atrophy and discoloration. I feel like little popping near my abdomen also.
About a week into these symptoms, I started to have a feeling of a little lump in my throat. Little by little in the matter of a month, that lump has turned into a feeling of my muscles near my throat atrophying and becoming weak. I feel like it's becoming harder to swallow, but I am getting the food down. I lost about 20 lbs. in a month.
I've done all the tests to rule everything else out. Everything negative. EMG/NCS came back clean. Not sure if that even matters since this disease is progressive. The Neurologists at Sansum Clinic In Santa Barbara have said this doesn't sound like ALS, I would worry about something else. One neuro is attributing that statement to never seeing any ALS patients coming in for muscle twitches first. The other neuro is saying that most ALS bulbar onset patients don't have any pre-cursors to their bulbar symptoms like I'm having.....isn't feeling muscles weakening and lump in throat getting worse a bulbar symptom?
The only test that has come back abnormal is an EEG. The doc is reading that today. I feel like the progression is happening too fast. I know it hits everyone differently, but could it be hitting my entire body this fast? I feel like it started out with my leg muscles feeling weak, but could it be that it was bulbar onset all along?
I need answers and feel like a diagnosis is taking too long. Friends and family are saying to thing positive and it could be anything. Well, the tests have all come back negative. I feel like anything else it could have been is out the door.
Lost and scared.