RealityGuy
New member
- Joined
- Apr 29, 2023
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- ON
Hello All, I am a 38 year old male and father of three beautiful kids. I have been reviewing this forum for a few weeks now. Lots of great information and insight and thank you to all who contribute.
I am almost certain that I will ultimately be diagnosed with this crushing disease even though I have just started the process with my GP. I am hoping to gain some comfort from this forum in dealing with and preparing for the inevitable.
January - started twitching all over upper body. Abdomen, chest, eyes. Attributed this to a stressful event that was occurring in my life at the time. The twitching lasted about a month. Had a physical done around this time and my iron levels were through the roof. Doc was concerned about Hemochromatosis at the time.
Fast-forward to the last few weeks and I've lost about 15lbs in 2-3 months (215-200), 10 of which was in the last 4-5 weeks. After my physical I re-commited to my fitness journey and wanted to lose a bit of weight. Battled some health anxiety the past month as well so was initially attributing the weight loss to a decrease in appetite and more time in the gym. Though on closer look at my body it's clear that muscles have seemingly deteriorated. Back muscles (scapular winging), chest has gotten soft, calves gradually shrinking and biceps. My calf muscles and biceps are showing asymmetrical atrophy. Im swimming in my old clothes. Muscle wasting is very evident to myself and those around me. The twitching have begun again all over my body. I have gotten three concerning 'locked' up spasms two of which were in my lower abdomen and shoulder elbow area during physical activity. One of the abdomen spasms was from a dramatic sneeze.
Recent bloodwork shows elevated CK levels 292u/l and elevated Ferretin in the 500 range.
Overall my strength seems to remain.
If I lay down with my hands above my head they progress to a level of numbness. Last night I noticed I was not able to spread my three interior toes on my right side where as I can on my left. I still can flex my toes back and forth.
Summary of Symptoms
-Muscle wasting
-Weight loss
-Twitching
-Spasms/cramps
-Elevated CK
-Inability to spread right toes
I am in absolute shock and numbness. I understand having to go through the diagnostic process but the symptoms are very strong. The atrophy and muscle wasting are very telling with the marked muscular difference between left calf and bicep vs right calf and bicep.
I have a follow up with my GP on Monday to review bloodwork results and discuss next steps. Likely won't be able to get a neurology appointment for months.
Thanks in advance for anyone who takes the time read and respond to my story.
I am almost certain that I will ultimately be diagnosed with this crushing disease even though I have just started the process with my GP. I am hoping to gain some comfort from this forum in dealing with and preparing for the inevitable.
January - started twitching all over upper body. Abdomen, chest, eyes. Attributed this to a stressful event that was occurring in my life at the time. The twitching lasted about a month. Had a physical done around this time and my iron levels were through the roof. Doc was concerned about Hemochromatosis at the time.
Fast-forward to the last few weeks and I've lost about 15lbs in 2-3 months (215-200), 10 of which was in the last 4-5 weeks. After my physical I re-commited to my fitness journey and wanted to lose a bit of weight. Battled some health anxiety the past month as well so was initially attributing the weight loss to a decrease in appetite and more time in the gym. Though on closer look at my body it's clear that muscles have seemingly deteriorated. Back muscles (scapular winging), chest has gotten soft, calves gradually shrinking and biceps. My calf muscles and biceps are showing asymmetrical atrophy. Im swimming in my old clothes. Muscle wasting is very evident to myself and those around me. The twitching have begun again all over my body. I have gotten three concerning 'locked' up spasms two of which were in my lower abdomen and shoulder elbow area during physical activity. One of the abdomen spasms was from a dramatic sneeze.
Recent bloodwork shows elevated CK levels 292u/l and elevated Ferretin in the 500 range.
Overall my strength seems to remain.
If I lay down with my hands above my head they progress to a level of numbness. Last night I noticed I was not able to spread my three interior toes on my right side where as I can on my left. I still can flex my toes back and forth.
Summary of Symptoms
-Muscle wasting
-Weight loss
-Twitching
-Spasms/cramps
-Elevated CK
-Inability to spread right toes
I am in absolute shock and numbness. I understand having to go through the diagnostic process but the symptoms are very strong. The atrophy and muscle wasting are very telling with the marked muscular difference between left calf and bicep vs right calf and bicep.
I have a follow up with my GP on Monday to review bloodwork results and discuss next steps. Likely won't be able to get a neurology appointment for months.
Thanks in advance for anyone who takes the time read and respond to my story.