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newdaddy

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I have been reading messages on this forum for a few weeks. I am so impressed with how kind and gracious everyone of you is, especially when it comes to alleviate the worries of others about this disease, people that may very well be healthy. You guys are truly inspiring.
A few months back I lost a dear uncle to ALS, today I fear this disease may cause more pain to my family. My symptoms started a few months back. I would have sudden pain in the tip of my toe or in my foot that would last me a day, go away then return for another day. This summer I had a prolonged cough that would not go away for three months, it was accompanied by night sweats, strong headaches and extreme fatigue. My regular doctor and an infectious disease doctor specialist tested me for all kinds of infections as well as autoimmune disease such as lupus, Lyme etc...all negative. A month and half later, just as my night sweats ended I started to notice problems with the coordination of my right hand. In a matter of days I started to feel occasional shooting pain in my arms, wrist, finger and hand, an extreme feeling of fatigue, shortness of breath and incredible tiredness in arms and legs. I lift my child up for 5 minutes and I feel as my muscle is as tired as if I was at the gym for hours. Aside for the extreme weakness in my upper body, another strange sensation is a "tension', it is mildly painful, but I feel it as I extend my arms open to my side. It feels as something is pulling inside my arms.
A neurologist had me schedule a brain MRI with and without contrast for Dec 22, I would appreciate any input about similarities with your personal experience.

May God bless you and your families.
 
My bet would be stress and anxiety caused by your uncles passing. Your symptoms starting around that time raises a red flag. You describe a lot of sensory issues that are not typical in ALS. I'd try not to worry until the tests are all done.

AL.
 
Thanks for your reply Al, have a peaceful holiday season.
 
Other than the fact that your uncle passed away from ALS, why do you think you might have it? First, none of the symptoms you listed are consistent with ALS. Second, unless there are other cases of ALS in your uncle's side of your family, it is extremely unlikely that your uncle's case was one of the hereditary variants of ALS, so you would be at no higher risk for getting ALS than anyone else in the general population.

My advice to you is to let your doctors do their job and figure out what's wrong with you. In the meantime, you should stop trying to diagnose yourself using the Internet. There is too much misinformation on the Internet, and all you're likely to do is to frighten yourself unnecessarily .

Good luck.
 
TRfogey
Thank you for reply, much appreciated. Good luck to you as well.
 
I'm going to jump in here and simply say that the story you have shared should not cause you any ALS concerns whatsoever. Please relax.
 
The hallmark of ALS is progressive weakness from which you do not recover. ALS is a motor neuron disease, not one involving sensory neurons. I'm with the others... doesn't fit the bill for ALS.
 
Wright
Thanks for taking the time to reply. It is encouraging to me to know how you guys feel. Regardless of what my tests will reveal, I feel strongly about doing my part in supporting the search for a cure to ALS. The people on this forum, their stories and lives are in my thoughts. Something needs to happen to give more visibility to your stories and to entice companies to invest more in the research to address the lack of treatment for this condition.
Take good care my friend.
 
Zaphoon
Thanks for your reply. It's not easy to explain symptoms, and I have omitted a few. I would say that my biggest is definitely weakness and immediate tiredness in my muscles. But I don't want to seem a hypochondriac, that adjusts his symptoms to feet the pathology. I will take the advice of people that know more than I do, and just wait the Doctor to give me a diagnosis. Many thanks for your help.
 
What you describe is not muscle weakness . . . but rather . . . muscle fatigue. Glad to hear that you're going to leave the diagnosing in the hands of the professionals. Take care.
 
Wright
Thanks. I was hoping to take advantage of your kindness and ask you some questions before I work on keeping my mind healthy while I wait for the MRI. My weakness or fatigue with the lack of coordination started about 3 weeks ago. At this point my arms and shoulder are also weak/fatigued. But if I touch the nerves in my arms around my muscles, they hurt. My hands when I try to make a fist, hurt. When I lift something and then relax the muscle, it twitches for a sec. If i tense my right bicep as if I was lifting a weight, my arm shakes, Do you have any of this pain/feelings like the tension I feel when I spread my arms out, or did it start just with weakness?
Thank you so much, I promise I'll stop asking questions.
 
Given the onset of your symptoms, I would guess that you have some type of post-viral autoimmune condition or the virus itself has caused your symptoms. It sounds as if your physicians had the same idea but failed to find anything in their tests. Sometimes those things "viral" or "autoimmune" go undetected. One of the reasons this can occur is because a condition is not progressive . . . meaning . . . it does its damage . . . be it a virus or your over-active immune system (i.e. autoimmune) . . . and then simply stops.

Analogy: A hurricane hits a town and does damage. Once the hurricane is gone, it can no longer be "detected." The town then must be rebuilt. The virus or autoimmunity that caused damage to your body is the hurricane. Your body is the town. You must now be patient and let your body heal.

This is pure speculation on my part . . . but given your story . . . I feel a very plausible explanation.
 
Wright
Thanks for your response. What you say makes sense and it does help me to be less worried. I'll be back here after my MRI to post the results of the test. Thanks again.
 
Before I got to Wright's reply I was thinking Post Viral too especially with the nightsweats. Hallmark to viral infections.
 
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