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Stangem94

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Learn about ALS
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NC
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Denver
Ok so here is my story it may be a little bit lengthy but I am nervous, scared and every other emotion that you can think of right now. I have 4 young children and a wife all of whom I love very much and am worried about their future as well.

I am a 37 y/o male back in Novemeber right before Thanksgiving I ended up in the ER with some food stuck in my throat, I have GERD and a stricture. Anyway long story short they had to do an endoscopy to make sure all of the food had gone down. A couple days after the procedure I had extreme pain in my arms and legs to the point where i couldnt hardly get in and out of my work van or go up and down stairs. I chalked it up to being one of the side effects of the anesthesia because it went away after a couple of days. Now here is where everything started going haywire.

A couple of weeks after the procedure I started haveing some muscle soreness in my arms then it would move to my legs. It would go on for a couple of weeks then go away for a couple then come back. Also during this time I started having some lightheadedness a crawling sensation in my head and extremely itchy scalp. I have a lung condition called ABPA so i went and saw my pulmonologist who at the time thought it may be coming from a flare up of that. Also during this time my gastro dr put me on 80 mg of omeprazole. I saw that a lot of the symptoms i was having were side effects of omeprazole so i stopped taking it. Once again the symptoms went away for about 3 weeks and once again came back this time with feeling like pins and needles in both cheeks on my face having some floaters in my vision and experiencing dry mouth.

I went and saw my regular doctor he didnt do any blood tests at this time but suggested that I may have Lyme disease because of the symptoms coming and going and also causing pain in my joints. He put me on an antibiotic and all the symptoms went away for about 3 weeks. As of last week the sore feeling in my arms and legs have returned. This week I have noticed when I stretch my legs to a certain position the muscle starts trembling and then today between my left index finger and thumb has started twitching when I put my arm in certain positions. I have an appointment with my regular doctor on Friday and am extremely nervous. I just need some reassurance about my symptoms. Also before I end this up until this week the symptoms usually are less or go away completely at night and are usually not there in the mornings when I first wake up.
 
Forgot to mention I am also currently taking 5mg of prednisone and 1000mcg of b12 and have also been very fatigued even after having close to 8 hours sleep a night. I do have sleep apnea and am on a CPAP.
 
Nothing you describe sounds like ALS. Have you contacted your doctor since being on the antibiotic. Sounds like more follow up is needed but I wouldn't go down the path of worrying about having a terminal illness at this point.
 
Thank you for your response. I have been so worried over this. I have an appointment this Friday. Have you or anyone who may see this post seen or heard anything like this? I am generally a very active person but since all this has started I dont want to do anything. The trembling muscles is what really got me concerned over it being a possibility of ALS.
 
No, can't see any cause to worry about ALS even though you may have something else going on.
 
Thank you Christine this sets my mind somewhat at ease. I'm just ready to have a dx. I havent been myself for a while now and I want to enjoy my kids. Again thanks!
 
If your regular doc isn't up for all this, I would see a rheumatologist. I would also check in with whoever's treating your asthma/ABPA about reconsidering your pred dose and however long you've been on it. But Christine is right that ALS doesn't seem on the table.

Best,
Laurie
 
Thank you Laurie for your response. Just for information purposes can any of you tell me any other questions I should bring up to my Dr other then my symptoms?
 
See the sticky on second opinions. Top questions are:

What have we ruled out?
What is still on the table?
What are we doing to narrow the diagnosis?
What can I do to feel better meanwhile in regard to things I am not doing/taking and things I am [like the pred]?
 
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