Old 02-19-2018, 04:29 PM #1 (permalink)
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Default Sacred about symptoms and hoping to get feedback

Hi everyone,

I'm a new member. This forum has been very helpful for me in recent weeks, and I was hoping to get some insight on my symptoms. I apologize in advance for the long explanation:

My symptoms started in early November 2017 when I noticed my upper lip began to twitch. It also felt like the left side of my tongue was numb. Around this time, I also felt pain down my left glute, calf and foot. I went to my primary and she referred me to a neurologist.

Met with Neurologist in early December 2017. He administered strength and reflex tests which were normal. He thought the leg pain was related to sciatica. He ordered a brain MRI to rule out any issues like tumor, etc. causing the numbness and twitch in my lip.

Prior to my Brain MRI in December, I woke up one morning with fullness in my left ear, dizzyness and vertigo. I couldn't walk without feeling like I was going to fall over. I immediately went to a ENT who found partial hearing loss in my left ear, and prescribed steroids. The vertigo subsided a few days later, but my hearing didn't fully recover 100%, following a second audiology test. At this time, I was able to make it to the MRI, which came back normal. No signs of tumor, MS, etc.

Since mid-December, right at the time I had hearing and vertigo issues, random body-wide muscle twitching started - arms, legs, glutes, stomach. I can even remember the exact night the twitching started - December 13th.

Since then, random muscle twitching has continued, up to and including today, with the most occurring in both my calves and feet at rest. I went back to the Neurologist in mid-January, and he did an EMG of both calves and quads, He advised it was normal. He thought my twitching is "probably benign" and he couldn't offer me a reason why I've experienced all of these symptoms. He isn't a neuromuscular specialist, so I'm concerned it was not thorough enough. I know this is my anxiety most likely.

Also, besides the continued twitching, I currently have the pain in my left glute, calf and foot. I don't feel like my muscles are week, just pain in my left leg, Including my heels. My left hand feels sore at times as well, but no issues with my grip.

My question is does ALS present itself like this? Is the pain related to possible weakness in my leg? I've tried to read so many helpful posts on this wonderful website to avoid asking questions that have been answered already. If anyone could offer opinions I would greatly appreciate it. I'm trying to get into a neuromuscular specialist here soon for a second opinion. Hoping the muscle twitching and pain stop soon.

Thank you to anyone who can offer thoughts or opinions. I will be donating to this website today as a new member who greatly appreciates everyone here trying to help others!
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Old 02-19-2018, 05:04 PM #2 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Hi Jric,

Youíre describing mostly sensory symptoms (pain, numbness, ear fullness, dizziness, vertigo). None of that would not be consistent with ALS, and ALS does not start like this.

You may have more than one thing going on: sciatica symptoms, and then the ear/ dizziness/ vertigo symptoms. Definitely these are worth evaluating, but they donít suggest ALS. I agre the twitching is most likely benign.

Best of luck.
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Old 02-19-2018, 07:03 PM #3 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Yeah, I agree. That's all kind of normal stuff for a normally healthy person, especially if you're pushing 40 years old.

It would be best to eliminate ALS from your thinking completely. You need to focus on fixing what really ails you. Probably it will go away, but you should get a second opinion. Unfortunately, sometimes our bodies do weird things that are either inconvenient or painful, and there isn't much you can do about it. Modern medicine is still in the Stone Age with some things.

To be sure, no ALS there.
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Old 02-22-2018, 06:54 AM #4 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Karen and Mike - Thank you both for your responses. It is comforting to know you both don't think this has to do with ALS. I hope to get a second opinion soon, and try to figure out what might be causing these symptoms.
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Old 02-25-2018, 02:19 AM #5 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

I would make sure the ENT ruled out Meniere's and the like. Agree that the twitching is likely unrelated, but depending on your age, FSHD should be part of the ruleout, also.

The good news is that all the possibilities we could think of are much more treatable/less life-threatening than ALS.

Best,
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Old 02-25-2018, 10:16 PM #6 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

I agree with others that these symptoms together are not typical for ALS, especially the vertigo. One thing you may want to look into with the vertigo is whether you have loose crystals in your ears, a physical therapist may be able to help with a maneuver to relieve that symptom. It's true that people with ALS can struggle with pain, but the pain usually comes on much later after the weakness, and the weakness most prominent. As far as twitching goes, yes that does occur with ALS but also with many many other things and occurs in healthy people. It's good that you are looking into what is going on medically but also do your best to self-care and minimize your stress levels if possible as that can exacerbate physical symptoms with any medical condition. Sending you warm wishes.
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Old 03-02-2018, 05:19 PM #7 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Thanks everyone for your replies. I recently had a lumbar MRI, and a follow up with my neurologist. The MEI came back clear of any issues, and my doc said he didnít see anything else going on.

However, My tongue has recently felt and looked very swollen and numb, with soreness that is very noticeable. Is there any connection to ALS with this type of symptom? My doc also ordered some additional blood work and my ANA came back positive.

Any thoughts or guidance are greatly appreciated. That you all!
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Old 03-02-2018, 05:27 PM #8 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Swollen and sore tongue in no way resembles a thing connected to neurological issues. Keep working with your doctor! This is good news.

I heartily recommend you not continue to surf around in this forum as it is likely to continue feeding your anxiety surrounding ALS. However, before you go, read the "READ BEFORE POSTING" post at the top of the "Do I Have ALS" subforum as all of the above symptoms you've listed are covered there.
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Old 03-06-2018, 08:26 AM #9 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Thank you for your reply. I appreciate everyone's help and feedback regarding my symptoms. I made a donation this morning to ALS Forums, as I know this website really does help people in so many ways, including me. Thank you!

The strange symptoms for me still continue. I have random muscle twitching, pain down my left leg into my foot, and numbness and swelling in my face and tongue. I really hope to get relief from this at some point. If there's any advice of where I should look for answers please let me know. Thanks again everyone.
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Old 03-06-2018, 11:44 AM #10 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Hi,
the only thing you can do is to keep going back to your doctor. Your symptoms could b caused by so many different things that it takes time to find a solution. what you are describing doesn't sound like ALS.
good luck

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Old 03-25-2018, 03:44 PM #11 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Thanks Wendy. I really appreciate your response. I’m still without any answers, and have a follow up with a new neurologist tomorrow morning.

I now have pain in my left elbow/wrist, down my left leg, knee, and foot. It’s not weakness just painful in the joints and leg muscles. Also, widespread muscle twitching (mostly in calves - but can be other spots), and numbness in face and tongue. I’ve had numerous blood tests and MRIs without any results showing a specific cause. I really hope they can find someway to figure this out.

I know everyone has offered their guidance. I just wanted to let you know the update from me. Still very concerned and hopeful to find some answers. Thank you again.
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Old 04-22-2018, 10:43 AM #12 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Hi everyone,
I’ve been hoping to get relief from my symptoms and wanted to repost to see if there’s any added insight I could receive from everyone. As always, your time and help is incredibly appreciated.
I’ve continued to have pain in my left leg and left foot, which comes and goes throughout the day. It seems my cranial nerves have been affected by this since the beginning, as all of my symptoms started back in November with facial twitching and numbness. The numbness feeling remains in my face, with very occasional twitching. The question I have relates to my tongue and neck. My tongue still looks and feels swollen constantly and it does affect my speech. There Is also a sense that the right side of my tongue is numb. Can someone please advise me if this in anyway relates to symptoms they’ve heard of? There’s also a sensation when I swallow that feels like liquid may go up my nose, but it never does. This could easily be in my head, or caused by the swollen tongue?

My other recent issue related to the muscles in the front of my neck. The front of my neck muscles seem smaller than they used to be. But again, I dont Know if I’ve just been affected by all of this for the past few months, and my anxiety is getting the best of me.
The diagnosis I’ve received is sensory polyneuropathy. And I truly hoping for any guidance whether this sounds right, or if I’m dealing with something different. My worst fears are getting the best of me. Any help is so greatly appreciated!
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Old 04-22-2018, 10:50 AM #13 (permalink)
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Default Re: Sacred about symptoms and hoping to get fee

You donít describe ALS. Tongue swelling is not ALS. Sensory symptoms, including pain and numbness, are not ALS.

You may indeed have something else going on, but itís not ALS. Please work with your doctor regarding your symptoms. We wish you well, but we canít help diagnose your other symptoms and canít give you any more reassurance than we already have.

You donít need to be here.
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Old 05-11-2018, 11:26 AM #14 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

Hi Karen,

Thank you for the reply a couple weeks ago. I really appreciate your insight, as well as everyone else’s precious comments over he past few months.

I have continued to get tests done by my neurologist, including a recent lumbar puncture to test for inflammation, infections etc. All tests came back normal, which normally would be good, but my symptoms still continue.

There’s constant pressure in my right ear, which seems to affect the right side of my tongue and throat. I’ve advised my doctors of this and they can’t understand what’s causing this. Fatigue and muscle soreness in my legs is also a contant issue for me, along with the widespread twitching. And I understand completely that twitching means nothing without weakness. However I still don’t understand why my muscles fatigue so easily.

I have taken prior opinions from the members here about this not being ALS seriously, and would not have posted if there wasn’t a change. The reason for another post this morning is my soft palate. It seems and feels very low, with the uvula resting on my tongue. I dont see twitching in my tongue, and i haven’t had an EMG of my bulbar region. Is this something that could possibly point towards a sign of weakness or bulbar?

Again, I continue to appreciate anyone’s opinion or insight on what I’m dealing with. I waiting to get another EMG from my neurologist, and i have an ENT appointment in 3 days.

If there’s any thoughts on this please let me know. Thank you again!

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Old 05-11-2018, 06:02 PM #15 (permalink)
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Default Re: Sacred about symptoms and hoping to get feedback

I think you are on a good path diagnostically, so wouldn't have anything to add, but don't see ALS in this. Keep us posted.


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