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seanm

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Hi everyone,

Thank you so much for having this forum. I am 27 years old and am concerned about some symptoms. For the past 13 years or so, I have had fasciulations throughout the body, especially neck, legs, arms, calf and tongue. Especially for the past few years, I have had muscle pain, numbness, jaw pain and clicking. Especiailly the past week (and as my anxiety has increased after reading about it and talking about ALS and other symptoms with a friend), I have felt this lump in the back of my throat making swallowing a bit more difficult than usual. It feels like there's all this post-nasal drip back there. Thankfully I can still swallow and liquids are better than solids but still I am concerned. I have not had any speech difficulties to date and am trying to remain grateful for the health that I do have. What's also strange, at least in combination with everything else, is that I recently returned to the gym and have been able to work out even more than before. At least compared to last year, my arm muscles seem a tad bigger (unless maybe I'm just deluding myself! :-D) or at least not smaller.

A little while ago, I really thought I had MS and/or TMJ. I went to a neurologist who says she thinks I'm okay but wanted an MRI just in case. It's tomorrow and I just want it to be over and get the results. After talking to a friend and reading more on the interent, I scheduled an EMG for next Monday. I'm getting it done on my extremities but am wondering if I should add the throat to it. Is that typically done?

Thank you very much.
 
Why would you think of ALS? If your at the gym and working out, that's a clear sign you don't have ALS? You do no have bulbar symptoms either. Where did you read that these were ALS symptoms?

As for the lump in the throat feeling. That is called the globus sensation. You get that either from acid reflex or anxiety.

You are worrying over nothing.
 
Hi,

Thanks for your reassurance, Seattle 86. I guess the difficulty swallowing (related to the lump I'm thinking?) made me think of ALS and some of my other sx, though I have heard that pain is not usually associated witih ALS, at least as an initial sign. Also, could someone's limbs still be strong when there is bulbar onset? I hope I'm worrying over nothign. This has really taken up so much space in my mind recently, and before this it was about MS and TMJ (still not yet ruled out because MRI is tomorrow). how are you doing?
 
If you had bulbar symptoms you could very well have no signs of limb onset for a while. What I have been told is that bulbar onset rarely hits people our age.
 
bulbar usually strikes people over 50 and the first symptoms is usually slurred speech. Ypu sound as if you are way too young, though there might be other things going on.. see your doctor and believe whatever you are told. dont go looking for bulbar als.
 
Hi Jennifer,

Thank you. Yeah, going to try to get the throat EMG (is this diagnostic though?). Thanks again! How are you doing? How do you cope?
 
You may also want to consider getting allergy tested!
 
Bulbar symptoms

Hey all,

Not to scare you all but my husband was just diagnosed with ALS at the age of 40 and his started with Bulbar then limb issues a week later. So it does strike at a young age.

Tina
 
hi! Tina...yes it can strike early as well but its very very rare specially when the guy isnt even 30!...and with ur husband u forgot to mention that he had a family history with ALS.
 
HI,

I'm sorry to hear about your husband! Yeah, I don't know...my difficulty swallowing come and goes and did respond a bit to acid reflux meds (I ran out recently and have to wait a bit before getting new ones) but for the past few days have had excessive yawning, so I don't know what to make of all this!

I had an MRI a little while back and brain was clear but neck had a herniation between C5 and C6 I believe (or 3-4). I was able to move lots of boxes recently (I moved), which made me think that limb stuff is okay for now.
 
age 40.bulbar onset.
 
"lump in throat" / / bulbar onset ALS

SeanM,
I had that lump in throat feeling for 4 or 5 months, getting worse until I felt like I would suffocate. The Dr. told me it would respond to light dose tranquilizer (Alprazolam), and I took med. Am & PM for about a year. It was such a small dose that I was able to work and drive with no problem. If I missed a couple of doses, the sensation would return. After about a year consistently on meds, I was able to taper down and go off the med. No problem since. Good luck with that.
My husband has Bulbar Onset ALS, diagnosed a year ago at age 63. He had progressively slurred speech and strangling problems for about 1 yr prior to diagnosis, as well as other symptoms. Because he has M.S. diagnosed 10 yrs ago, the medical community was sure it was a progression of that condition. Wrong, but it wouldn't have made much difference overall. He was unable to tolerate the combination of Lithium and Rilutek, so we'd have just found that out sooner if they'd diagnosed the ALS sooner. No difference really.
I've wracked my brain trying to figure out why they say "LIVE with ALS", rather than die with it. We all know that is the ultimate outcome, but I can tell you now that after a year of one problem after another, endless complications and struggles, loss after loss for my husband and myself, I would advise you to "live" now and worry less about the cause of your symptoms. Someone could cross the center line or any number of other mishaps could result in our death tomorrow. Don't spend one minute more than is necessary trying to find answers to symptoms; spend your time loving, laughing, seek peace, beautiful sunsets, take lots of photos and get them developed, grant the forgiveness you may have withheld, tell people what they mean to you. One of our friends wrote my husband a letter about how he'd influenced her in many positive ways during the years she's known him - it was the letter of a lifetime! Make sure your lifetime, however long or short, counts for you and for those you love in a positive way...whether or not you ALS. Good luck.
Newbie
 
Newbie, that was beautiful.
 
Hi,

Yes, thank you so much! That was quite beautiful :)
 
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