ny1987
New member
- Joined
- Sep 10, 2014
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- Somers
Hi. I posted here for the first time about 10 years ago. While the very slow progression of my symptoms has me hopeful that it may not be MND, I really am at a loss and this is beginning to engulf me again, especially now that I have a son.
One call out, I have not had a recent EMG...I had a few early on, with the last one about 7 years ago, so a few years into my symptoms. I don't have them handy anymore, but I recall one registered a few fasciculations but not much else. The other I had sent to user named Wright on this forum back then...he had come back and said it didn't look like something that showed ALS but what it showed may have suggested a demyelinating issue. MS comes to mind however MS does not result in elevated CK levels. As far as getting a new EMG...I know I need to, I have just been too scared of what it may show. I have a two year old son now and I spend pretty much every non occupied second of my existence imagining not being able to see him grow up.
My next step is to go see a neurologist again (I saw several early on), as just mentioned above, fear has been the main thing preventing me from going again.
Below is a list of my symptoms as they stand currently. At this point they are impacting my quality of life but are not preventing me from doing things.
Breathing - cannot take a full deep breath, my chest does not move up and down when I take deep breaths ever, only my stomach. PFT results showed restrictive pattern, I don't recall the exact value. The pulmonologist said it wasn't extremely low but was lower than being overweight should cause. I've gotten all the other tests (xray, cat scan, etc. all negative) My primary care doctor about 4 years ago (before he moved to a new state) commented when he was concerned that my chest was not expanding when I was breathing during a routine physical. I also had a sleep apnea test done (I have it) and when the technician was preparing the apparatus that goes over your chest to monitor breathing, kept coming in and out adjusting it and was very confused, because it wasn't registering my chest expansion when breathing. The feeling of not being able to take a deep breath was actually the very first symptom i noticed roughly 10 years ago. It's very slowly but progressively gotten worse.
Swan neck deformity - This has been developing over a few years, was diagnosed last year with swan neck in my right ring finger. It is very slowing beginning to develop in my middle finger as well on the same hand (it's not very far along yet in that finger but the knuckle is beginning to concave). He tested me for RA which was negative, and I've had no hand injuries
Elevated CK levels - my last 4 CK tests have all been elevated over the course of a few years; 315, 312, 259, and 192 (most recent)
Urinary weakness - sorry if this is TMI, but it's purely medical. What seems to be the muscle that controls the end of my urethra is very weak, difficult pushing out both urine and semen, very weak streams. I have spasms in my urethra quite often that started before the weakness about 6 or so years ago
Ankle weakness -when I begin to run or walk, my right ankle will sometimes give out or almost give out on me. It's a strange feeling in that if I get myself jogging and this happens, it's almost like my ankle "sets" and then I don't have the issue anymore until the next time
Muscle fatigue - my muscles, especially in my hands/arms get fatigued/painful very quickly. Examples are doing things like stirring while cooking, using a screwdriver, etc. Will get very fatigued and sometimes cramp up very quickly
Muscle twitching - random, all over, basically since this began (literally everywhere, legs, arms, tongue, head, butt, etc.)
Myoclonus - this used to happen moreso in my legs, now its mainly confined to my fingers, where ever few weeks I'll go through a few days where a finger or two just move on their own
Atrophy - the main area is on my left hand. I attached a picture with my right hand for comparison. This is a spot that also specifically gets sore and fatigued when doing something intensive with my hands. There's a couple other areas that I think could or could not be but this is the main one that concerns me.
One call out, I have not had a recent EMG...I had a few early on, with the last one about 7 years ago, so a few years into my symptoms. I don't have them handy anymore, but I recall one registered a few fasciculations but not much else. The other I had sent to user named Wright on this forum back then...he had come back and said it didn't look like something that showed ALS but what it showed may have suggested a demyelinating issue. MS comes to mind however MS does not result in elevated CK levels. As far as getting a new EMG...I know I need to, I have just been too scared of what it may show. I have a two year old son now and I spend pretty much every non occupied second of my existence imagining not being able to see him grow up.
My next step is to go see a neurologist again (I saw several early on), as just mentioned above, fear has been the main thing preventing me from going again.
Below is a list of my symptoms as they stand currently. At this point they are impacting my quality of life but are not preventing me from doing things.
Breathing - cannot take a full deep breath, my chest does not move up and down when I take deep breaths ever, only my stomach. PFT results showed restrictive pattern, I don't recall the exact value. The pulmonologist said it wasn't extremely low but was lower than being overweight should cause. I've gotten all the other tests (xray, cat scan, etc. all negative) My primary care doctor about 4 years ago (before he moved to a new state) commented when he was concerned that my chest was not expanding when I was breathing during a routine physical. I also had a sleep apnea test done (I have it) and when the technician was preparing the apparatus that goes over your chest to monitor breathing, kept coming in and out adjusting it and was very confused, because it wasn't registering my chest expansion when breathing. The feeling of not being able to take a deep breath was actually the very first symptom i noticed roughly 10 years ago. It's very slowly but progressively gotten worse.
Swan neck deformity - This has been developing over a few years, was diagnosed last year with swan neck in my right ring finger. It is very slowing beginning to develop in my middle finger as well on the same hand (it's not very far along yet in that finger but the knuckle is beginning to concave). He tested me for RA which was negative, and I've had no hand injuries
Elevated CK levels - my last 4 CK tests have all been elevated over the course of a few years; 315, 312, 259, and 192 (most recent)
Urinary weakness - sorry if this is TMI, but it's purely medical. What seems to be the muscle that controls the end of my urethra is very weak, difficult pushing out both urine and semen, very weak streams. I have spasms in my urethra quite often that started before the weakness about 6 or so years ago
Ankle weakness -when I begin to run or walk, my right ankle will sometimes give out or almost give out on me. It's a strange feeling in that if I get myself jogging and this happens, it's almost like my ankle "sets" and then I don't have the issue anymore until the next time
Muscle fatigue - my muscles, especially in my hands/arms get fatigued/painful very quickly. Examples are doing things like stirring while cooking, using a screwdriver, etc. Will get very fatigued and sometimes cramp up very quickly
Muscle twitching - random, all over, basically since this began (literally everywhere, legs, arms, tongue, head, butt, etc.)
Myoclonus - this used to happen moreso in my legs, now its mainly confined to my fingers, where ever few weeks I'll go through a few days where a finger or two just move on their own
Atrophy - the main area is on my left hand. I attached a picture with my right hand for comparison. This is a spot that also specifically gets sore and fatigued when doing something intensive with my hands. There's a couple other areas that I think could or could not be but this is the main one that concerns me.