CelineEs
New member
- Joined
- Feb 11, 2023
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 0/0000
- Country
- US
- State
- CA
- City
- LA
Hello Guys,
I don’t even know how to start. I feel very nervous and scared Please forgive my English since it’s not my first language. Back in DecemberI noticed I was getting some difficulty pronouncing some words ,even in English and Spanish, this continue for a few days got a little beter but it came back even worse and people around me definitely noticed it. Also had blurred vision for a couple of weeks. I made an appointment with my Primary physician she said it all stress related.
At the beginning of January I noticed while working on the computer, my right hand felt weak and it has gotten worse since then, also i started having fasciculacion all over my body and this never happened to me before. in addition to that a couple of times my right leg got completely numb It was hard walk. So my concerns increased. I ask for a referral to see a neurologist, I have a telephone appointment with her first and she ordered a brain MRI (result was abnormal: Numerous scattered foci of supratentorial deep, subcortical, and periventricular white matter signal abnormality are noted, with a left frontal lobe predominance. No infratentorial lesions are identified.
Impression Numerous nonspecific scattered foci of
T2/FLAIR signal abnormality in the supratentorial white matter as described above. No abnormal enhancement. Consider demyelinating disease in the appropriate clinical setting.
So last week I was able see the neurologist In person, and informed me about the MRI results and she suggested ordering
more test done ( spinal MRI and lumbar tap which they will do on Monday) MS or any other auto Inmune desease it’s what they trying to find or rule out. However, the main reason I wanted to see her was because I thought my symptoms were more related with MND/ALS . And told her I was completely terrified cause never felt those symptoms before.
Ok, She did the physical exam( will attached her report as well) on my right arm and face sensation was a little different ( down to 90%and 85%) I mention about my right and annular finger weakness but according to her she didn’t notice a true weakness just fatigue, but I really wasn’t OK with that though cause I keep feeling weak and I have started experience new symptoms as well like tremors, thumb twitching in both hands, having difficulty to breath, talk, and internal tremors or fasciculations around my throat,neck and my jaw feels rigid. Also I’m afraid to go to sleep cause all get worse at night and honestly terrified.
Going back to the neuro visit she didn’t think I was developing ALS cause didn’t find any weakness on the exam she told me I was really strong, nonetheless I asked her for EMG and NCS tests which she did two days later ( normal results) however i always use to read the notes from the physician after every visit and I panicked when I saw the word hyperreflexia. So my question is, how come she didn’t mention this in the first place.? and I had to found out reading her notes. How come my EMG was normal having a pathological reflex? I don’t understand, my concerns are extremely high. I honestly im confuse, don’t know what to think. I’m terrified and still have those two more test to be done ( spinal tap and MRI) to probably get a diagnosis….
Thank so much guys and all the help and advices I could get will be Highly appreciated .
Celine.
attached you will find the. EMG RESULTS AND HER NOTES THANK YOU ,
I don’t even know how to start. I feel very nervous and scared Please forgive my English since it’s not my first language. Back in DecemberI noticed I was getting some difficulty pronouncing some words ,even in English and Spanish, this continue for a few days got a little beter but it came back even worse and people around me definitely noticed it. Also had blurred vision for a couple of weeks. I made an appointment with my Primary physician she said it all stress related.
At the beginning of January I noticed while working on the computer, my right hand felt weak and it has gotten worse since then, also i started having fasciculacion all over my body and this never happened to me before. in addition to that a couple of times my right leg got completely numb It was hard walk. So my concerns increased. I ask for a referral to see a neurologist, I have a telephone appointment with her first and she ordered a brain MRI (result was abnormal: Numerous scattered foci of supratentorial deep, subcortical, and periventricular white matter signal abnormality are noted, with a left frontal lobe predominance. No infratentorial lesions are identified.
Impression Numerous nonspecific scattered foci of
T2/FLAIR signal abnormality in the supratentorial white matter as described above. No abnormal enhancement. Consider demyelinating disease in the appropriate clinical setting.
So last week I was able see the neurologist In person, and informed me about the MRI results and she suggested ordering
more test done ( spinal MRI and lumbar tap which they will do on Monday) MS or any other auto Inmune desease it’s what they trying to find or rule out. However, the main reason I wanted to see her was because I thought my symptoms were more related with MND/ALS . And told her I was completely terrified cause never felt those symptoms before.
Ok, She did the physical exam( will attached her report as well) on my right arm and face sensation was a little different ( down to 90%and 85%) I mention about my right and annular finger weakness but according to her she didn’t notice a true weakness just fatigue, but I really wasn’t OK with that though cause I keep feeling weak and I have started experience new symptoms as well like tremors, thumb twitching in both hands, having difficulty to breath, talk, and internal tremors or fasciculations around my throat,neck and my jaw feels rigid. Also I’m afraid to go to sleep cause all get worse at night and honestly terrified.
Going back to the neuro visit she didn’t think I was developing ALS cause didn’t find any weakness on the exam she told me I was really strong, nonetheless I asked her for EMG and NCS tests which she did two days later ( normal results) however i always use to read the notes from the physician after every visit and I panicked when I saw the word hyperreflexia. So my question is, how come she didn’t mention this in the first place.? and I had to found out reading her notes. How come my EMG was normal having a pathological reflex? I don’t understand, my concerns are extremely high. I honestly im confuse, don’t know what to think. I’m terrified and still have those two more test to be done ( spinal tap and MRI) to probably get a diagnosis….
Thank so much guys and all the help and advices I could get will be Highly appreciated .
Celine.
attached you will find the. EMG RESULTS AND HER NOTES THANK YOU ,
Attachments
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