Jshemnitz
Member
- Joined
- Feb 19, 2019
- Messages
- 22
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MA
- City
- Boston
Hi All,
I have been reading a lot of the posts on this site for the past week and half and decided to finally post my own story.
I have been dealing with a lot of weird symptoms lately and decided to see a neurologist about it earlier this week who specializes in neuromuscular issues and has seen a lot of ALS patients in his clinic.
I am not saying my doctor is wrong, but I still have this horrible feeling inside that I have ALS. He feels very confident I am not dealing with ALS or any other neuromuscular degenerative issues and said he didn't want to order an EMG.
I am in the process of trying to get a 2nd opinion from another neuromuscular doc outside of this practice... any suggestions or am I just crazy to want this?
The weight and overall body muscle loss has been the biggest issue for me over the past few months, and then all of the other symtoms started after it. I know ALS can cause one's metabolism to go into hyper mode which can cause weight and muscle loss. I have been scanned for every possible cancer or other disease that can cause the weight loss as well as a million blood tests too.
All blood tests are normal (see attachment to this post
Summary of symptoms
• General Weight/Muscle Loss rapidly starting in Nov - especially legs, waist, Chest, Neck (down 2 pant sizes) – was 32 (sometimes 33) waist size in pants and then went down to 30 and 30 a year ago and now both of those are too big. The Slim fit part of it along my legs are now super baggy (no changes to diet, workout or loss of appetite)
• Hurt left shoulder at the gym 2nd week in Jan on 6th after doing a triceps press down on a machine with way too much weight accidentally. (haven’t worked out since) Felt pain immediately in shoulder and deltoid area. Noticed weakness in left arm soon after doing 2 arm chest press on a guided machine. Left Arm/Hand Weakness (holding things, dropping things, clumsiness, things feeling abnormally heavy starting soon after– Went to Physical Therapy on Feb 8 and failed a couple weakness/strength test for my left arm -PT saw lots of tightness in both shoulders and neck; I also had some occasional right shoulder pain at this point. Now getting an even higher level of weakness and rigidness in right arm (noticed 2/20 initially); Now Left leg now feels very heavy. crampy and week and it’s becoming more of an effort and finding leg tiredness after just to walk or stand for periods of time; Right leg feeling sore now on lower quad as of 2/22)
• Ton of twitching in back and arms (started 2/20) – kept me up most at night since 2/21; left thigh started 2/22; Right Thigh started 2/23
• Upper back and neck have been the worst pain I have had outside of the shoulders (upper back pain by shoulder blades started in December (on/off) that felt like someone was sticking a stick in my back repeatedly every second or 2 and in hindsight It may have actually been twitching ; everything else was early Jan); Back and neck pain getting much worse 2/25; Guessing the back and neck pain and probably the shoulders are the muscles wasting away and the other joints and muscles around it taking on more of a responsibility to hold myself upright.
• Hoarseness/Nasal Voice/Thick Mucus back of throat non-stop (started early Feb) –nonstop coughing with no other signs of a cold (no sneezing, runny nose, etc) took Mucenex 2/22 AM (Which isn’t helping) after having a coughing fit and almost felt like choking for moment.
• Regular Neck Stiffness especially 1st thing AM - Back & Sides of Neck – was very painful on 2/25. Noticed stiffness in early Feb; Chiropractor noticed tissue loss on left side of neck (towards bottom part) compared to right side (early Feb)
• Left foot discomfort– started in November (feels like something between my foot and sock or sock; Sometimes the foot has a heavy feeling too
• Cramping/discomfort in both big toes and also under arches when stretching out feet
• Blood Markers – Increase in CRP, Decrease in Lymphocyte % & total (and increase in Neutrophil to Lymphocyte ratio, decrease in Creatinine from a year ago, increase in CPK rapidly over last 2 months, Increase in Ferritin, Rapid decrease Total Bilirubin over past year+, increase in Folate (over 20+ maximum range)
• Left side of cheek is all bumpy and chewed up from biting my cheeks (found a big blood blister randomly 2 weeks ago); never had this issue on my cheeks before
• Sleep Apnea diagnosis (moderate) / based on study from late Dec (awaiting fitting for dental device- report showed 88 obstuctive hyponea events averaging 10 sec at a time (also 1 central apnea event of approx. 10 sec)
Here are the doctor notes from the neuro clinic visit:
BP 132/86
Heart Rate 131
BMI 23.65
Height70.75 inches
General:
Well developed in no apparent distress
No Scoliosis, lordosis, kyphosis, pes cavus or hammertoes.
No contractures or joint laxity noted
Neurogoligical:
Speech is coherent and fluent without dysarthia or aphasia.
No face, jaw, palate or tongue weakness or atrophy.
Motor exam:
Revealed normal muscle bulk and tone
There is no evidence of atrophy or fasciculations.
Manual muscle testing revealed MRC grade 5/5 strength througout.
Coordination - complex motor skills revealed normal coordination
Gait: Patient had normal gait. Able to walk on heels, toes and tandom without any difficulty.
Romberg was negative.
Reflexes: Deep Tendon reflexes were 2 at biceps and triceps, 2 at the brachioradialis and 2 at knees and ankles. Plantar responses were flexor bilaterally.
Assessments: patient seen for evaluation of muscle twitching and subjective weekness and concern for ALS. Exam today is essentially normal showing no clear motor or sensory deficits. His reflexes are normal and symmetric. Muscle twitching and aches can be related to a number of factors such as sleep deprivation, stress, caffeine consumption or anxiety. I will hold off on further neurological investigations at this time. I reasurred patient that his presentation is not worrisome for ALS or any other progressive neurodegenerative disorder.
I am a Caucasion 38yr old male as an FYI
I have been reading a lot of the posts on this site for the past week and half and decided to finally post my own story.
I have been dealing with a lot of weird symptoms lately and decided to see a neurologist about it earlier this week who specializes in neuromuscular issues and has seen a lot of ALS patients in his clinic.
I am not saying my doctor is wrong, but I still have this horrible feeling inside that I have ALS. He feels very confident I am not dealing with ALS or any other neuromuscular degenerative issues and said he didn't want to order an EMG.
I am in the process of trying to get a 2nd opinion from another neuromuscular doc outside of this practice... any suggestions or am I just crazy to want this?
The weight and overall body muscle loss has been the biggest issue for me over the past few months, and then all of the other symtoms started after it. I know ALS can cause one's metabolism to go into hyper mode which can cause weight and muscle loss. I have been scanned for every possible cancer or other disease that can cause the weight loss as well as a million blood tests too.
All blood tests are normal (see attachment to this post
Summary of symptoms
• General Weight/Muscle Loss rapidly starting in Nov - especially legs, waist, Chest, Neck (down 2 pant sizes) – was 32 (sometimes 33) waist size in pants and then went down to 30 and 30 a year ago and now both of those are too big. The Slim fit part of it along my legs are now super baggy (no changes to diet, workout or loss of appetite)
• Hurt left shoulder at the gym 2nd week in Jan on 6th after doing a triceps press down on a machine with way too much weight accidentally. (haven’t worked out since) Felt pain immediately in shoulder and deltoid area. Noticed weakness in left arm soon after doing 2 arm chest press on a guided machine. Left Arm/Hand Weakness (holding things, dropping things, clumsiness, things feeling abnormally heavy starting soon after– Went to Physical Therapy on Feb 8 and failed a couple weakness/strength test for my left arm -PT saw lots of tightness in both shoulders and neck; I also had some occasional right shoulder pain at this point. Now getting an even higher level of weakness and rigidness in right arm (noticed 2/20 initially); Now Left leg now feels very heavy. crampy and week and it’s becoming more of an effort and finding leg tiredness after just to walk or stand for periods of time; Right leg feeling sore now on lower quad as of 2/22)
• Ton of twitching in back and arms (started 2/20) – kept me up most at night since 2/21; left thigh started 2/22; Right Thigh started 2/23
• Upper back and neck have been the worst pain I have had outside of the shoulders (upper back pain by shoulder blades started in December (on/off) that felt like someone was sticking a stick in my back repeatedly every second or 2 and in hindsight It may have actually been twitching ; everything else was early Jan); Back and neck pain getting much worse 2/25; Guessing the back and neck pain and probably the shoulders are the muscles wasting away and the other joints and muscles around it taking on more of a responsibility to hold myself upright.
• Hoarseness/Nasal Voice/Thick Mucus back of throat non-stop (started early Feb) –nonstop coughing with no other signs of a cold (no sneezing, runny nose, etc) took Mucenex 2/22 AM (Which isn’t helping) after having a coughing fit and almost felt like choking for moment.
• Regular Neck Stiffness especially 1st thing AM - Back & Sides of Neck – was very painful on 2/25. Noticed stiffness in early Feb; Chiropractor noticed tissue loss on left side of neck (towards bottom part) compared to right side (early Feb)
• Left foot discomfort– started in November (feels like something between my foot and sock or sock; Sometimes the foot has a heavy feeling too
• Cramping/discomfort in both big toes and also under arches when stretching out feet
• Blood Markers – Increase in CRP, Decrease in Lymphocyte % & total (and increase in Neutrophil to Lymphocyte ratio, decrease in Creatinine from a year ago, increase in CPK rapidly over last 2 months, Increase in Ferritin, Rapid decrease Total Bilirubin over past year+, increase in Folate (over 20+ maximum range)
• Left side of cheek is all bumpy and chewed up from biting my cheeks (found a big blood blister randomly 2 weeks ago); never had this issue on my cheeks before
• Sleep Apnea diagnosis (moderate) / based on study from late Dec (awaiting fitting for dental device- report showed 88 obstuctive hyponea events averaging 10 sec at a time (also 1 central apnea event of approx. 10 sec)
Here are the doctor notes from the neuro clinic visit:
BP 132/86
Heart Rate 131
BMI 23.65
Height70.75 inches
General:
Well developed in no apparent distress
No Scoliosis, lordosis, kyphosis, pes cavus or hammertoes.
No contractures or joint laxity noted
Neurogoligical:
Speech is coherent and fluent without dysarthia or aphasia.
No face, jaw, palate or tongue weakness or atrophy.
Motor exam:
Revealed normal muscle bulk and tone
There is no evidence of atrophy or fasciculations.
Manual muscle testing revealed MRC grade 5/5 strength througout.
Coordination - complex motor skills revealed normal coordination
Gait: Patient had normal gait. Able to walk on heels, toes and tandom without any difficulty.
Romberg was negative.
Reflexes: Deep Tendon reflexes were 2 at biceps and triceps, 2 at the brachioradialis and 2 at knees and ankles. Plantar responses were flexor bilaterally.
Assessments: patient seen for evaluation of muscle twitching and subjective weekness and concern for ALS. Exam today is essentially normal showing no clear motor or sensory deficits. His reflexes are normal and symmetric. Muscle twitching and aches can be related to a number of factors such as sleep deprivation, stress, caffeine consumption or anxiety. I will hold off on further neurological investigations at this time. I reasurred patient that his presentation is not worrisome for ALS or any other progressive neurodegenerative disorder.
I am a Caucasion 38yr old male as an FYI
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