Razor
New member
- Joined
- Sep 1, 2014
- Messages
- 6
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- Sydney
Hi All,
I'd like to start by saying I have the highest respect for PALS and CALS living with ALS. Before posting I have reviewed alot of the previous posts and sticky's to answer my own questions, however the time has come where I need personal advice as my situation is unique and scary.
Any thoughts on my situation would be greatly appreciated.
I am 35, male married with 2 young children living in Sydney Australia.
My Story starts 10 months ago in February 2014.
Within 3 days I noticed the onset of the following symptoms:
- Dizziness & motion sickness
- Poor Balance
- Unable to clearly state words, not slurred just occasionally not coming out right like I would say thud instead of thumb etc
- Body wide twitching
- Visual issues (floaters, shimmering)
- Brain fog, forgetting peoples names etc.
All of the above symptoms besides the twitching lasted 3 months.
Seen a doctor for routine blood work, several levels were off including CRP and SED. The Local doctor believed I was hit with a virus and things would settle.
March:
- Muscle pain in both thighs more the right, joint pain in both knees more the right and right elbow. Right tricep is ceased and to this day doesn't flex properly. No atrophy is present but plenty of twitches and cramps straight away on flex. Internet research (well you know how that goes) left me thinking I have MS. I had an MRI which come back clear. I seen a Neuro 30 years experience, who completed a clinical exam and said he didn't see any areas for concern.
- Blood levels started to come back to normal levels, the pain subsided in my thighs and knees however was left with the slightest feeling of weakness (perceived) mostly in legs. Pain/cramps remain in my right tricept and right elbow which has remained that way and often is red. Local doctor is saying post viral syndrome give it time. Some days feel better then others.... I also have feelings of loss of sensation across the back of my hands, pins and needles rarely on the soles of my feet and burning in my forearms.
April:
- Weakness continues and my arms and every other muscle is now affected, I can muster strength when required however a tremor is noticed when I flex any muscles. Feels like effort to raise eyebrows, shrug shoulders, span fingers.... feels weak and tremorish. when I smile for 10 seconds cheek tremors, lift head off pillow, neck tremors etc. its becoming more difficult to walk. hands and feet feel alittle uncoordinated and awkward.
Went back to same Neuro as I believe he is very experienced, he acknowledges the increase in tremor however doesn't believe there are any significant issues neurologically. he said some people have theses symptoms then they clear up.... Passed the clinical very easily. he suggests seeing a Rhumy.
May:
- Weakness progress' mostly in right leg but all over.
- I start to feel muscle fibrillation in my right calf. Not much information on felling fibrillation but I believe that's what it is. One week Later I started feeling fibrillation in my left calf. Intermittent and happens only once or twice a day on rest.
- Right elbow is red.
June/July:
- Weakness progress', Calves have become stiff, certain muscles cramp on use at times. Rhumy sends me for EMG and Evoked potential studies to rule out ALS and MS.
- EMG and clinical is clean by respected clinic and Dr, SSEP was completed in local hospital and was not normal in right leg however they said the machine malfunctioned. due to waiting test length and MS being cleared from MRI the test is not completed again. I mention intermittent Fibrillation and he was unable to detect in calf. detected only twitches in calf, Dr says I have BFS.
Rhumy says I have Fibro even thou I do not have any tender points.
August:
- Weakness progress', fibrillation now felt in both legs, calves front and back, both arms and forearms, chest and back.
Current JAN:
- Legs have remained the same perceived weakness for a few months, stiffness comes and goes daily.... sometimes left, right or both. I did get a cramp one week ago in my right calf which has remained.... feels like a knife thru my muscle every step I walk.
- Fibrillation continues each night intermittently in all leg muscles. still can only walk 5 minutes.
- Hands have Progressive perceived weakness which I believe is turning into clinical weakness especially right hand pinky which is shaky and uncoordinated on individual use, however left hand is also affected. Dexterity getting worse especially in right hand.... Hard to type, write etc but can still do it if I have to.
- Fibrillation continues each night intermittently in arm muscles.
- Lost alot of muscle bulk from around my body, especially around elbows, ankles etc...
- I cant say 100% I've noticed atrophy however I have noticed dips appear in my hands around the thumb tendon when I flex my hand. Nothing is noticed when my hand is relaxed.
- I continue to get intermittent bouts of loss of sensation, pins and needles and burning on forearms, hands and feet. Sometimes it feels like my hands are weaker when this sensation is present.
I used to have good days and bad days, now its just worse days!
I haven't booked any further appointments as I have tried to stay positive with things like "perceived weakness" "clean EMG" "sensory issues" The cramps, stiffness, worsening of symptoms and fibrillation are really bringing me down and its become a major struggle to be at work or around people. especially when I feel new or worsening symptoms.
Any opinions would be greatly appreciated.
I'd like to start by saying I have the highest respect for PALS and CALS living with ALS. Before posting I have reviewed alot of the previous posts and sticky's to answer my own questions, however the time has come where I need personal advice as my situation is unique and scary.
Any thoughts on my situation would be greatly appreciated.
I am 35, male married with 2 young children living in Sydney Australia.
My Story starts 10 months ago in February 2014.
Within 3 days I noticed the onset of the following symptoms:
- Dizziness & motion sickness
- Poor Balance
- Unable to clearly state words, not slurred just occasionally not coming out right like I would say thud instead of thumb etc
- Body wide twitching
- Visual issues (floaters, shimmering)
- Brain fog, forgetting peoples names etc.
All of the above symptoms besides the twitching lasted 3 months.
Seen a doctor for routine blood work, several levels were off including CRP and SED. The Local doctor believed I was hit with a virus and things would settle.
March:
- Muscle pain in both thighs more the right, joint pain in both knees more the right and right elbow. Right tricep is ceased and to this day doesn't flex properly. No atrophy is present but plenty of twitches and cramps straight away on flex. Internet research (well you know how that goes) left me thinking I have MS. I had an MRI which come back clear. I seen a Neuro 30 years experience, who completed a clinical exam and said he didn't see any areas for concern.
- Blood levels started to come back to normal levels, the pain subsided in my thighs and knees however was left with the slightest feeling of weakness (perceived) mostly in legs. Pain/cramps remain in my right tricept and right elbow which has remained that way and often is red. Local doctor is saying post viral syndrome give it time. Some days feel better then others.... I also have feelings of loss of sensation across the back of my hands, pins and needles rarely on the soles of my feet and burning in my forearms.
April:
- Weakness continues and my arms and every other muscle is now affected, I can muster strength when required however a tremor is noticed when I flex any muscles. Feels like effort to raise eyebrows, shrug shoulders, span fingers.... feels weak and tremorish. when I smile for 10 seconds cheek tremors, lift head off pillow, neck tremors etc. its becoming more difficult to walk. hands and feet feel alittle uncoordinated and awkward.
Went back to same Neuro as I believe he is very experienced, he acknowledges the increase in tremor however doesn't believe there are any significant issues neurologically. he said some people have theses symptoms then they clear up.... Passed the clinical very easily. he suggests seeing a Rhumy.
May:
- Weakness progress' mostly in right leg but all over.
- I start to feel muscle fibrillation in my right calf. Not much information on felling fibrillation but I believe that's what it is. One week Later I started feeling fibrillation in my left calf. Intermittent and happens only once or twice a day on rest.
- Right elbow is red.
June/July:
- Weakness progress', Calves have become stiff, certain muscles cramp on use at times. Rhumy sends me for EMG and Evoked potential studies to rule out ALS and MS.
- EMG and clinical is clean by respected clinic and Dr, SSEP was completed in local hospital and was not normal in right leg however they said the machine malfunctioned. due to waiting test length and MS being cleared from MRI the test is not completed again. I mention intermittent Fibrillation and he was unable to detect in calf. detected only twitches in calf, Dr says I have BFS.
Rhumy says I have Fibro even thou I do not have any tender points.
August:
- Weakness progress', fibrillation now felt in both legs, calves front and back, both arms and forearms, chest and back.
Current JAN:
- Legs have remained the same perceived weakness for a few months, stiffness comes and goes daily.... sometimes left, right or both. I did get a cramp one week ago in my right calf which has remained.... feels like a knife thru my muscle every step I walk.
- Fibrillation continues each night intermittently in all leg muscles. still can only walk 5 minutes.
- Hands have Progressive perceived weakness which I believe is turning into clinical weakness especially right hand pinky which is shaky and uncoordinated on individual use, however left hand is also affected. Dexterity getting worse especially in right hand.... Hard to type, write etc but can still do it if I have to.
- Fibrillation continues each night intermittently in arm muscles.
- Lost alot of muscle bulk from around my body, especially around elbows, ankles etc...
- I cant say 100% I've noticed atrophy however I have noticed dips appear in my hands around the thumb tendon when I flex my hand. Nothing is noticed when my hand is relaxed.
- I continue to get intermittent bouts of loss of sensation, pins and needles and burning on forearms, hands and feet. Sometimes it feels like my hands are weaker when this sensation is present.
I used to have good days and bad days, now its just worse days!
I haven't booked any further appointments as I have tried to stay positive with things like "perceived weakness" "clean EMG" "sensory issues" The cramps, stiffness, worsening of symptoms and fibrillation are really bringing me down and its become a major struggle to be at work or around people. especially when I feel new or worsening symptoms.
Any opinions would be greatly appreciated.