Rapid onset of symptoms

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Haymo4

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Greetings,
I am a 44 year old attorney, happily married with two small children. I became familiar with ALS when a second cousin was diagnosed at age 30 in 2001. We have become closer through the years and he is an inspiration to everyone that meets him. He is still with us, married a beautiful woman and published a book since his diagnosis. I have experienced symptoms consistent with my understanding of ALS for the past month and was curious if onset typically occurs so rapidly.

Five weeks ago, while on vacation, I sensed weakness in my left arm. I have always been an avid runner and a few days later ran my normal three mile route. My left leg felt stiff and “dead” from the bottom of my foot to my hip for the remainder of the day. This was concerning to be sure as I was unaccustomed to such a feeling from the hundreds of times I’d run this route. In the intervening weeks I’ve noticed weakness and some pain (not sure if clinical) in my left and right hands. Yesterday I managed to run only half a mile and both legs felt tight and fatigued all day. I have noticed rippling fasiculations in my left upper thigh and left hand over the past few weeks. Muscle twitches are a constant in my thighs, calves and arms although I have learned they are not by themselves indicative of ALS. They only began five weeks ago. My wife recently noticed that my left bicep is objectively smaller than my right.

I saw a neurologist two weeks ago and he noticed a stronger reflex on my left side. He ordered an MRI of the cervical spine and brain which both came back clean. Also I have a slight tremor in both hands. I first observed the tremor about two months ago but chalked it up to a hangover (!) or anxiety. In addition, I have been dealing with severe and debilitating bouts of vertigo for over a year. I am in a constant state of disequilibrium and standing can be challenging though surprisingly it is easier to walk briskly or run. Despite this I am still able to work, walk, ride a bike, carry my daughter and drive. I get an EMG in five weeks.

I have been reading posts on these forums for the past few weeks and am amazed about the knowledge, kindness and support I see here. The physical weakness/fatigue in both legs seems indisputable but I only started noticing this over the past five weeks. Obviously I’m anxious but taking it one day at a time and focusing on the things I can control. Any insight you all may have is welcome as to sudden onset of symptoms. An acquaintance of mine from college was diagnosed five years ago at age 41 and from his internet posts I understand that great strides are being made towards making this a treatable disease. He is still productive five years since his diagnosis. Thank you so much for your thoughts.
 
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Nikki J

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What else did the neurologist note on exam? Weakness? Spasticity? Hyperreflexia in more than one place?

5 weeks is extremely fast to be going from fine to symptoms in 3 limbs.
 

Haymo4

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Thanks for the quick reply Nikki. He jotted down “weakness” on my report. He noticed a subtle hyperreflexia on the left knee but this was not in his report. No spasticity noted by the neurologist.
 

Nikki J

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If by report you mean clinical note you would be able to have a good idea both of specifics of exam ( which areas were weak/ how weak they were) and also their current thoughts on differential diagnoses. If they wrote weak on your orders for testing that doesn’t tell you much as they have to put something and would have used weakness as that is your chief complaint. I encourage you to get and keep copies of your notes and tests as they are helpful if you seek another opinion and for your own reference and education. all the results and notes should be available online.
 

Haymo4

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To provide an update to others here who are considered about their symptoms, I received the results of my EMG today. According to my neurologist, there was nothing in the EMG to suggest ALS or other MND. The report did show carpal tunnel damage in my right hand. At present I observe and experience widespread muscle fasiculations in legs and arms on both sides of the body and trunk, constant muscle tightness in both calve muscles, tremor in both left and right hands, pain in both hands and in the arches of both feet and frequently a rhythmic and involuntary muscle contraction in the area between my index finger and thumb. Nonetheless, my EMG does not point to ALS. I read in this forum that some had experienced similar symptoms after taking a Covid vaccine. For what it’s worth, my symptoms began after receiving the first vaccine. I appreciate the time and contributions of the many PALS, caregivers and other experts here. Many thanks for all you do.
 
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