minnguy
Member
- Joined
- Aug 18, 2016
- Messages
- 14
- Reason
- Learn about ALS
- Country
- US
- State
- Minnesota
- City
- Eagan
Hi all - I've read your stickies on symptoms multiple times over the past several months and have pretty much perused a large amount of threads looking for answers. But, I figured it is time to ask the questions here about whether this is ALS I'm experiencing?
Symptoms started with back pain and pin prick sensations around rib cage in May. The pin pricks eventually subsided and turned into twitches round my lower rib cage and under my sternum. Also experienced weird stiffness in my toes and fingers on left side. Went to neuro in June thinking MS and MRIs and EMG of left side were normal, spinal tap normal as well.
Went to second opinion at end of July. Mildly brisker reflexes on left side were noted. During August I developed tightness and spasm type feelings in my throat. Pain while swallowing and pain in throat like cramping muscles. Had swallow study done which was normal for function but showed I had small hiatial hernia (weak diaphram?). August 31st repeat EMG on left side limbs was normal. I only had minor fasics at this time in my calf and foot. I've noticed weaker 3rd and 4th toes on my left side and more recently on my right side.
Met with Neuro again and had brisker reflexes now on both sides but he said clean EMG means no ALS. The weakness in my toes is very subjective for a neuro to measure but my left calf is smaller than the right and the concern is that is where it has been twitching for the most part. The twitching is 90% in my left leg but I have it in my face, neck, and tongue as well and this has increased recently. It is also on the right side limbs more consistently as well. Hands have been generally good aside from cramps and stiffness causing typing issues.
In the past couple of weeks I've experienced pain while inhaling and exhaling and especially when laying down. Last week at doc my oxygen was 96. I've also begun experiencing stiffness and muscle aches throughout my body and specifically in my throat area (at the back of tongue), diaphragm, and legs.
To add on so you can tell me I'm crazy just like the rest of my family....I've had a Mayo Neuro tell me I'm ok and then then next day a former ALS clinic director tell me we have to wait and see.
Does anyone have any thoughts if I should be concerned?
Awaiting bulbar EMG next week and Mayo ALS specialist appt two weeks later.
Another question that might help clarify. If you have fascis that don't happen during your EMG the EMG should still detect ALS, that is my understanding. However, the question of "too early" has been raised and I've read, symptoms should appear after EMG would be able to detect them. What symptoms? Weakness only or actual fascis?
I'm sure I'll get hammered for saying "feel" or "pain" in my post but doesn't muscle weakness become painful if the weak muscle is strained for use? Or if it is mildly cramping or spasming? (for me the diaphragm and throat area)
Thanks.
-DJ
By the way I'm a 36 yr old male.
Symptoms started with back pain and pin prick sensations around rib cage in May. The pin pricks eventually subsided and turned into twitches round my lower rib cage and under my sternum. Also experienced weird stiffness in my toes and fingers on left side. Went to neuro in June thinking MS and MRIs and EMG of left side were normal, spinal tap normal as well.
Went to second opinion at end of July. Mildly brisker reflexes on left side were noted. During August I developed tightness and spasm type feelings in my throat. Pain while swallowing and pain in throat like cramping muscles. Had swallow study done which was normal for function but showed I had small hiatial hernia (weak diaphram?). August 31st repeat EMG on left side limbs was normal. I only had minor fasics at this time in my calf and foot. I've noticed weaker 3rd and 4th toes on my left side and more recently on my right side.
Met with Neuro again and had brisker reflexes now on both sides but he said clean EMG means no ALS. The weakness in my toes is very subjective for a neuro to measure but my left calf is smaller than the right and the concern is that is where it has been twitching for the most part. The twitching is 90% in my left leg but I have it in my face, neck, and tongue as well and this has increased recently. It is also on the right side limbs more consistently as well. Hands have been generally good aside from cramps and stiffness causing typing issues.
In the past couple of weeks I've experienced pain while inhaling and exhaling and especially when laying down. Last week at doc my oxygen was 96. I've also begun experiencing stiffness and muscle aches throughout my body and specifically in my throat area (at the back of tongue), diaphragm, and legs.
To add on so you can tell me I'm crazy just like the rest of my family....I've had a Mayo Neuro tell me I'm ok and then then next day a former ALS clinic director tell me we have to wait and see.
Does anyone have any thoughts if I should be concerned?
Awaiting bulbar EMG next week and Mayo ALS specialist appt two weeks later.
Another question that might help clarify. If you have fascis that don't happen during your EMG the EMG should still detect ALS, that is my understanding. However, the question of "too early" has been raised and I've read, symptoms should appear after EMG would be able to detect them. What symptoms? Weakness only or actual fascis?
I'm sure I'll get hammered for saying "feel" or "pain" in my post but doesn't muscle weakness become painful if the weak muscle is strained for use? Or if it is mildly cramping or spasming? (for me the diaphragm and throat area)
Thanks.
-DJ
By the way I'm a 36 yr old male.
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