Waiting more tests, symptoms progressing

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JAS1212

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I am so grateful for any feedback offered. I pray for all those suffering with this awful disease. I’ve read through the rules and hope that I can explain my symptoms with respect to you all. I’m in the waiting period but have had some tests thus far.

At the beginning of October I went to ER twice. I had pelvic pain/bad UTI and experienced numbness in abdomen and incontinence. Full CT of abdomen/pelvic had ovarian cyst, uti not subsiding causing bladder spasm, and a bruised rib which had caused the numbness and unrelated. However, I don’t recall injuring myself.

The week before this visit I noticed my tongue feeling heavy which made sense bc I was dehydrated but drinking water like crazy, and still felt this way. I also had some muscle spasms and twitching. The day after visit I noticed vision changed and dizziness. The little twitches were in my throat and I felt like my throat was constricted. I was still severely dehydrated a few days later and continued losing weight. Went to ER again and other than dehydrated, normal bloodwork. He suggested i follow up w neuro based on my symptoms.

I was able to get in neuro pretty quickly. MRI-brain/spine normal. EMG- Showed carpal tunnel, extreme in right and slight on left. He did not test tongue and I don’t recall doing my neck. EEG-showed non specific abnormality. Awaiting at home 3 day EEG study. Vertigo test also abnormal.

My main concern at this point is the throat/swallowing. Tounge continues to be heavy and quivers at rest. My voice goes horse abd weak last 2 weeks. I swallow food and water but I continue to have these little 1-2 second flutters in my throat and burp constantly after eating or drinking anything. Burping probably 100 times a day. I’ve also had eye pain intermittently, like a tight pulling sensation. during all of this my right leg has a tightness in quad, almost like a pulled muscle, but when I stretch it doesn’t help I don’t feel like it’s even stretching. I feel like it just wants to give out on me. But my left leg is fine and not tight and I do feel it stretch.

The muscle twitches are all over, which I know points away from ALS. They feel like little butterfly or heart palpitations. Most are 1-2 seconds anywhere in body (neck, hand, finger, ankle, calf, shoulder, bicep, butt, abdominal). Behind shoulder blade about 8 seconds.

I’m just wondering should I start seeking a second opinion with the swallowing issues as he didn’t look at this area on EMG, and has anyone had an abnormal EEG? With the holiday week the waiting has stretched out and it feels like symptoms progressing.

Thank you to anyone who reads this and offers their opinion.
 

ShiftKicker

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Hi there-

If you could make sure to read here: Read Before Posting

It covers much of what brings people to this forum after searching online. While everything that you post pretty much points away from ALS, it must be a concern to you- so it would be a good idea to go back to your doctor for a follow up. ALS isn't in the picture, given everything that you've listed (as you will read in the linked post), but something is going on. Hopefully with more in-person medical visits, it will become more clear.

Take care
 

lgelb

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ALS would not affect the EEG and what you're describing doesn't sound like it at all. With any abnormality, it's good that you're getting that followed up. I suspect at least part of the answer to your problems will be found in the brain's activity, which is what the EEG looks at.

Best,
Laurie
 

JAS1212

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I apologize if I missed something. I did read that. Was concerned of the progression I’ve had with swallowing as it continues to feel more abnormal and the constant burping is new. My PCP suggested a swallow test. I’ll start there.

I guess I was worried I tested too early on EMG if it was starting w swallowing.

I have a ways to wait for follow up w neuro so will see him again after the next EEG. Thank you so much for reply. Will keep you all in my prayers.
 

affected

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If you read that post we ask you read before posting, it carefully explains why the EMG was not done too early.
I hope the neuro can help you figure out what is going on soon as I can see how anxious you are.
Do ask the neuro to also explain to you what they think is most likely going on, and why your symptoms don't suggest ALS to them as that is more meaningful as they are talking about you specifically.
Certainly nothing at all in what you report rings concerns for me regarding ALS. That doesn't mean there is nothing going on, just that you seem to be jumping around grabbing at anything you think you might connect together.
Return to your PCP if you can't get your concerns together so that you can be helped to see what is happening more clearly.
 
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