Sacred about symptoms and hoping to get feedback

[Jric80]

Thanks Laurie. I really appreciate your response.

I have tried to continue telling myself the sensory aspects of this point away from ALS. But then comes another change like today which makes me concerned. Besides the recent soft palate concerns, the issues with my cranial nerves (ear pressure causing sensation of numbness on right side of tongue) is slightly affecting my speech. Certain words (with “ch”) can be difficult at times.

I’ve read mixed things about symptoms that come and go pointing away from ALS. But then I read bulbar stories with early symptoms that come and go. It’s very hard for me to dismiss this as something else due to these symptoms not going away.

 

[lgelb]

You said it yourself -- it's the pressure/numbness that is affecting your speech. That's not ALS.

 

[Jric80]

Thank you. I visited the ENT yesterday and she did an overall exam. She ordered a swallowing study done for tomorrow to make sure everything is ok with my throat. I emphasized the issue I’m having with the nerves on the right side of my face and tongue.

And she said the ear discomfort or pressure is right where the cranial nerves exit and come out towards the face and tongue. I said I’ve noticed an issue with speech and a feeling my tongue is swollen. She doesn’t think my tongue is swollen, but definitely affected by the neuralgia. She did recommend an EMG.

My fear and concern is my speech becoming more impacted as things progress. My apologies for continuing to ask, but I’ve read how slurred speech can progress, and members here describing feelings of tongue being swollen or certain words being difficult to pronounce. I know my fear could be getting the best of me here. And I’m trying to trust the doctors. Could this be something to worry about? If there’s any additional insight, or specific things I should know or look for, please let me know at your convenience. Thank you all!

 

[Bestfriends14]

Hi there,

I'm not sure how many more reassurances that you need from the forum to emphasize the fact that your symptom onset is not anything like ALS. Your first post indicated issues with your left side and now your posts indicate issues with your right side. ALS doesn't bounce around in the manner in which your symptoms are.

For peace of mind, do go ahead with the EMG so you can ease your fears of having ALS once and for all. Again, none of your symptoms are adding up to what ALS onset is. That's really great news for you. As mentioned before, please re-read PLEASE READ BEFORE POSTING, to get peace of mind.

Take good care.

 

[Atsugi]

NO! Jric80.
We said no.
Over and over, no.
Here's a little perspective, Jric80: You're coming to a group of people who are dying, and you are expecting us to give you comfort.

 

[Jric80]

Mike thank you for the reply, and my apologies if my posts are not sensitive to the other members. I have become so appreciative of everyone on this forum over the past few months, as I read how everyone here truly try’s to help those struggling with this disease. As well as helping those worried about their symptoms.

I’m just at a loss about how I feel, and I have been trying to find solutions from the doctors as best I can. Also researching on my own, which doesn’t always help. I’ve read many other posts on this forum from people with similar symptoms trying to find help and answers. Similar to what’s been done for me, incredibly helpful members advise it’s not ALS and to keep working towards other answers. I wish there were posts showing what the actual cause was, but many people don’t circle back and provide a final resolution.

I’m hoping to find answers from my docs. The pain in my calves and feet are the worst they’ve been. Twitching constantly at rest as well. Also, right ear pressure that seems to cause speech issues. I know Pain points away from als, and I’m trying to ascertain what other diseases or problems present with sensory symptoms like this? So many people seem to ask this very question.

Thank you all for your help throughout these last few months. I know I’ve posted too many times, but please know every response I’ve received has provided comfort, and I greatly appreciate it. I have made a donation to this wonderful forum which offers help when other websites fuel concern and fear. Thank you.

 

[lgelb]

Let's summarize. You had a normal EMG of your legs. You have had an abnormal ANA. You have something going on with your ear, and received a course of steroids. You've had a swallowing study -- what were the results? You've had another EMG recommendation, presumably for the bulbar region. So I take it you're going to do that. That will illuminate whether your nerves are damaged in that area.

If you have anything, I don't think it's ALS. But new data are forthcoming. If the 2nd EMG is negative, I would circle back to your PCP and look more closely at systemic possibilities, e.g. markers of inflammation/a possible [post] viral infection, etc.

Pending the EMG, please don't chase this diagnosis. It's not one you want. Live your life.

Best,
Laurie

 

[Jric80]

Laurie, thank you very much for the reply. I agree, if the results of the next EMG is normal it is time to regroup with my doctor. The results of the swallowing study were normal. However, my ENT can’t understand why Im having the pain and pressure in my ear, and why it’s impacting my tongue.

The pain and burning in my legs continue, and I know that is not a presenting symptom. If I can find any answers on what this is, I will post an update.

 

[Clearwater AL]

Hope you find the answers to your mystery illness. If you receive a confirmed answer let us know but...

posting any new symptoms or updates of old symptoms, will be a waste adding nothing more to the two pages your thread has covered.

Hope you find an answer. Until then...