Concerned Father - Thank You

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Crue7364

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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.
 

lgelb

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As I think you know, the post-fatigue onset year you describe isn't ALS, though I'm sure it hasn't been fun. I would ask the neuro about a sleep study. Waking up and feeling like you've run a marathon, coupled with movement that disrupts sleep, suggests that might be actionable information to have. I don't see any reason to worry about ALS or anything like it.

Best,
Laurie
 

affected

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Definitely as lgelb says, fatigue is not anything like ALS. PALS feel normal and simply cannot make muscles work as the brain is not sending signals.
Try reading this really carefully to help you work through all the differences in what is happening for you and what ALS is.

I hope you get this resolved soon.
 

Crue7364

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Hello All

I did return to the neurologist today who completed an EMG and NCS. I am grateful that he did not feel there were any concerning issues with my muscles. He tested several via EMG after performing a physical exam that he indicated did not show any concerning signs. The NCS he said showed some issues with my ulnar nerve on the left side that is likely causing some of my left hand issues but did not feel it was anything that required intervention. In the end, he acknowledged my fasciculations along with the array of other symptoms I presented with but said that he does not feel MND is something we need to worry about at this time.

Should anything change I will update my post. Otherwise, I will be making a donation and will do my best to focus on living my best life. I thank the moderators, PALS/CALS for maintaining this forum in an effort to assist concerned folks like me. In the end, we have to listen to our healthcare providers and trust what they and the reports they produce tell us.

Finally, like many others who have posted here, I have been 100% convinced I must be afflicted by this terrible disease. I have spent hours reading posts and worrying, not finding anything to assuage my fears. As a reminder, I dealt with a host of symptoms including cramping, fasciculations (primarily right calf but also in other leg and arms, shoulders, and abdomen), and fatigued muscles (everywhere). The more I read on here the more symptoms I seemed to develop. While I don’t have a for sure answer as to what is causing my problems, my neurologist is confident it is not a MND, and for that I am thankful.

I will continue to pray for a cure so we can end this terrible disease and stop the suffering it causes. Thanks.
 

Nikki J

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Thank you for letting us know. While we expected you to be cleared it is good to hear

as you say reading post after post, googling and worrying all makes symptoms worse and the best course is always to see your doctor, follow their advice and trust the test and exam results
 
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