Crue7364
New member
- Joined
- Jul 1, 2021
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NE
- City
- Lincoln
Hello everyone. First, I would like to thank you for considering my information and providing your insights. I appreciate the work you do on this site and the community support that you provide. I have been reviewing this site for several weeks now and reading many of the posts and responses (including stickies several times). Rather than continue doing that - I felt the need to post my information - listen to some answers - and then provide updates for other members as I receive medical results.
I am a 34 year old caucasian male and father to a one year old girl. My health journey started about one year ago and has continued to progress. I will do my best to efficiently summarize below. Thank you again for your responses. I provide the details only for your context.
July 2020- I began experiencing profound fatigue. The onset was sudden. I was unable to exercise at all. I could not even do a jumping jack. My arms and legs felt extremely fatigued and heavy. I went to my PCP at the time and they ran a battery of tests (CBC, CMP, Vitamins, etc.). All came back normal. As I continued to feel fatigued and unable to exercise I was referred to a local Neurologist.
August 2020 - I attended my Neurology appoitnment. He listented to my symptom history, performed a physical exam, and ordered an MRI of the brain w/contrast. He said he did not see any neurological issues but would order the MRI to be sure. The MRI was unremarkable and he advised to follow-up if symptoms persisted.
September 2020 - December 2020- I slowly regain my strength but continue to feel a bit ill. I see a GI who performs a colonoscopy & endoscopy - both unremarkable. Symptoms persists and GI orders CT scan. Slightly enlarged lymph nodes in abdomen otherwise unremarkable. PCP suspects possible lymphoma so I am referred to Hematology. Hematologist performs physical exam and runs additional labs. Agrees to perform repeat CT in February.
January 2021 - February 2021 - I begin feeling much better. I am able to return to my normal workout routine, go skiing, and engage in other more 'normal' activities. Some symptoms persist (such as strange alcohol intolerance that was developed at beginning of this ordeal) but otherwise able to perform daily activities. Follow-up CT is unremarkable other than same slightly enlarged lymph nodes. Hematologist says he sees nothing of concern. I try to get on with my life.
March 2021 - April 2021- I begin feeling fatigue, headache, & dizziness intermittently. This escalates after experiencing food poisoning in Florida and continues through April & May. I have a difficult time concentrating. My right calf muscle starts cramping up - especially at night.
May 2021 - I begin to experience extreme tightness in my right calf, especially during exercise. My extreme fatigue returns. I find it difficult to complete regular tasks. All of my muscles feel extremely fatigued. Typing becomes more tiresome. My hands and forearms feel tight. My neck feels strained and tight. Lifting basic objects becomes more difficult. Holding my daughter becomes much more difficult and I have to switch arms frequently as my muscles tire rapidly. I notice twitching in my right calf. At first it is intermittent, but then becomes constant.
May 2021 - June 2021 - I continue to experience extreme fatigue. I rapibly lose about 14 lbs in a 2 week period without trying. I return to the Hematologist who performs another CT - same slightly enlarged lymph nodes otherwise unremarkable. I notice the fasciculations spread from my right calf to my right foot. I begin experiencing fasciculations in my left calf as well. These have now also become constant. I intermittently experience twitching in my quads. My feet begin to cramp and I experience cramping pain in the arches of my feet. I occassionally experience twitching in my abdomen, lower back, as well as other upper body muscles (triceps, delts, biceps). I return to my PCP. I explain the twitching and he suggests I return to the neurologist as there are "Neurological issues that could explain all of your symptoms including the weight loss and twitching...weight loss can be caused by muscle wasting so we need to get you back to the neurologist"
July 2021 - While my mental fatigue has slightly improved and I feel slightly less ill, my muscle fatigue and twitching has not. ALL of my muscles feel extremely fatigued. I wake up and feel like I've been up working out all night, but I haven't. My calf muscles twitch ALL NIGHT. They never stop. It wakes me up. My upper legs twitch intermittently - especially when I stretch. My hands and feet continue to feel cramped and tire quickly. I await a Neurology appointment and EMG on 7/19/2021.
Othe Notes: I have not experienced failure at this point. Just the extreme fatigue. It is body-wide. Unlike last time, the muscle fatigue does not seem to be improving. I used to be extremely active and work out at the gym 5 - 6 x per week. I haven't been to the gym since May. I struggle a great deal with sleep. I have suffered from chronic insomnia on and off for the past 17 years. I take medication (in process of tapering off of Clonazepam as I do not want to be on a benzo long-term but was prescribed by Psych Doc back in November 2020). I have not had restful sleep in several months. I see a therapist regularly in an effort to keep my mind off of the constant health concerns and deal with my overall situation. I am terribly concerned. I know there could be many reasons for the fasciculations but they aren't going away. They are constant in my calves which means a constant reminder that something isn't right. I have had a full-body MRI done to rule out MS and other issues.
As I said - I will update this thread with my EMG results on 7/19 as I want to be helpful to others. In the meantime - any feedback from some of the many knowledgeble members regarding my symptoms and how they may or may not relate to ALS/MND would be greatly appreciated. Thank you.
I am a 34 year old caucasian male and father to a one year old girl. My health journey started about one year ago and has continued to progress. I will do my best to efficiently summarize below. Thank you again for your responses. I provide the details only for your context.
July 2020- I began experiencing profound fatigue. The onset was sudden. I was unable to exercise at all. I could not even do a jumping jack. My arms and legs felt extremely fatigued and heavy. I went to my PCP at the time and they ran a battery of tests (CBC, CMP, Vitamins, etc.). All came back normal. As I continued to feel fatigued and unable to exercise I was referred to a local Neurologist.
August 2020 - I attended my Neurology appoitnment. He listented to my symptom history, performed a physical exam, and ordered an MRI of the brain w/contrast. He said he did not see any neurological issues but would order the MRI to be sure. The MRI was unremarkable and he advised to follow-up if symptoms persisted.
September 2020 - December 2020- I slowly regain my strength but continue to feel a bit ill. I see a GI who performs a colonoscopy & endoscopy - both unremarkable. Symptoms persists and GI orders CT scan. Slightly enlarged lymph nodes in abdomen otherwise unremarkable. PCP suspects possible lymphoma so I am referred to Hematology. Hematologist performs physical exam and runs additional labs. Agrees to perform repeat CT in February.
January 2021 - February 2021 - I begin feeling much better. I am able to return to my normal workout routine, go skiing, and engage in other more 'normal' activities. Some symptoms persist (such as strange alcohol intolerance that was developed at beginning of this ordeal) but otherwise able to perform daily activities. Follow-up CT is unremarkable other than same slightly enlarged lymph nodes. Hematologist says he sees nothing of concern. I try to get on with my life.
March 2021 - April 2021- I begin feeling fatigue, headache, & dizziness intermittently. This escalates after experiencing food poisoning in Florida and continues through April & May. I have a difficult time concentrating. My right calf muscle starts cramping up - especially at night.
May 2021 - I begin to experience extreme tightness in my right calf, especially during exercise. My extreme fatigue returns. I find it difficult to complete regular tasks. All of my muscles feel extremely fatigued. Typing becomes more tiresome. My hands and forearms feel tight. My neck feels strained and tight. Lifting basic objects becomes more difficult. Holding my daughter becomes much more difficult and I have to switch arms frequently as my muscles tire rapidly. I notice twitching in my right calf. At first it is intermittent, but then becomes constant.
May 2021 - June 2021 - I continue to experience extreme fatigue. I rapibly lose about 14 lbs in a 2 week period without trying. I return to the Hematologist who performs another CT - same slightly enlarged lymph nodes otherwise unremarkable. I notice the fasciculations spread from my right calf to my right foot. I begin experiencing fasciculations in my left calf as well. These have now also become constant. I intermittently experience twitching in my quads. My feet begin to cramp and I experience cramping pain in the arches of my feet. I occassionally experience twitching in my abdomen, lower back, as well as other upper body muscles (triceps, delts, biceps). I return to my PCP. I explain the twitching and he suggests I return to the neurologist as there are "Neurological issues that could explain all of your symptoms including the weight loss and twitching...weight loss can be caused by muscle wasting so we need to get you back to the neurologist"
July 2021 - While my mental fatigue has slightly improved and I feel slightly less ill, my muscle fatigue and twitching has not. ALL of my muscles feel extremely fatigued. I wake up and feel like I've been up working out all night, but I haven't. My calf muscles twitch ALL NIGHT. They never stop. It wakes me up. My upper legs twitch intermittently - especially when I stretch. My hands and feet continue to feel cramped and tire quickly. I await a Neurology appointment and EMG on 7/19/2021.
Othe Notes: I have not experienced failure at this point. Just the extreme fatigue. It is body-wide. Unlike last time, the muscle fatigue does not seem to be improving. I used to be extremely active and work out at the gym 5 - 6 x per week. I haven't been to the gym since May. I struggle a great deal with sleep. I have suffered from chronic insomnia on and off for the past 17 years. I take medication (in process of tapering off of Clonazepam as I do not want to be on a benzo long-term but was prescribed by Psych Doc back in November 2020). I have not had restful sleep in several months. I see a therapist regularly in an effort to keep my mind off of the constant health concerns and deal with my overall situation. I am terribly concerned. I know there could be many reasons for the fasciculations but they aren't going away. They are constant in my calves which means a constant reminder that something isn't right. I have had a full-body MRI done to rule out MS and other issues.
As I said - I will update this thread with my EMG results on 7/19 as I want to be helpful to others. In the meantime - any feedback from some of the many knowledgeble members regarding my symptoms and how they may or may not relate to ALS/MND would be greatly appreciated. Thank you.