Scary Symptoms. Any help would be Appreciated

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dfamlone

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Hello, I am 38 year old male that has been having some scary symptoms and wanted to get some opinions.

Symptoms
It started a little before thanksgiving I noticed my hands were swelling and hurting. Particularly the right hand. On 11/28 my right index finger started to twitch, and I noticed my left arm was getting fatigued really fast, this was followed by my left eye starting to twitch really heavy. This was also accompanied with having to pee a lot.

As of today my right leg feels wobbly at times, I have loud crunching in both knees, tremor in both thumbs, pain in the finger joints, was having numbing in the left pinky which went away. The left eye does not twitch often but the right eye twitches almost constantly and it’s a very subtle twitch and it’s almost activated when I touch it which really scares me. I have this weird tightening on the chin that happens mostly in the morning but seems to wear off by night. I started having trouble swallowing not food or water just in general. It feels like a lump in my throat along with a crunching sound. It’s not with every swallow.

I also have twitching in my calves (more like crawling), buttocks, neck and arms. My vision has also been weird it will go blurry but then get back normal throughout the day. I’m having trouble going to the bathroom. I get random pains in my arms legs but it will go away. In particular my left foot will wake me up with a shooting pain that feels like cramps but it’s painful.

At night when I turn over my arm (it’s usually the right arm) with start to feel like it shaking or vibrating and sometimes my body will feel like a internal vibration. My tongue has started to twitch when I look at it along with my face will twitch when I smile or scrunch my face in any manner and when I open my mouth my lips will twitch. Lastly is the tremor in now both my thumbs and both my pinky finger.

Doctor Visits.
So I have seen my pcp and a neurologist and so far no one has flat out told me it’s not ALS and I am worried sick about it and it disrupting my life to a horrible extent.

Testing So Far;
So far I have

Chest X-rays. All normal

Blood work: all normal except Anit Histone but I don’t take any drugs for drug induced lupus, Epstien Barr IGG (which show I had it as the igm is normal) greater then 600, Lyme Antibodies but that was a false negative as western block came back normal, Rocky Mountain Spotted Fever IGM came in really high but has not been confirmed with IGG which is pending as I type.

MRI of head and neck all normal except mild disk degenerate in two locations but no pinched nerves. They are sending me back for another one because this was not done with contrast

Because of the swallowing issue a Ultrasound of the neck was done a nodule was found which they suspect is a reactive lymph node as the second ultrasound shows it went down in size

EMG ( see attached) which the legs were normal and the arms showed I have carpal tunnel syndrome in both wrist

My doctor also order some additional blood work.

My worries:
My symptoms are very concerning and all that I have read is that ALS could be causing this and that I have an onset of bulbar. Is this anything anybody can give some insight to? Was the EMG possibly done to early? I will note I had them done a week apart with all these symptoms present. Can CTS be a flag for ALS? Also there are two lines in the report that talk about latency is that worriessome in regards to ALS? And as far as the two most concerning symptoms the lump in throat and crunching sound (note: i do suffer with GERD for over 10 years jut had a endoscopy in October 21 all was fine never had this happen before and i am high does of Prilosec) and the constant right eye twitching, is something that show I may have ALS?

Conclusion;
The scary part is all these symptoms progressed really fast and have not really Gone away. The action tremor bother me as I work with my hands and on the computer. We had snow the other day and I went to shovel the driveway to test myself I was able to shovel the driveway but was sore for the next two to be expected and my wife said ALS does not present in the pattern it’s presenting but I can’t help but worry about and I am truly terrified. Also a thought but it hasn’t been proven because my Epstein-Barr was so high and I believe I got it from my wife as she stated she had mono and was diagnosed with MS last year, I was wondering could all this be MS related as studies show Epstein-Barr has a direct connection to MS, but my MRI were normal but again are being repeated two weeks from now.
 

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Nikki J

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You should ask your neurologist and gp these questions. I have to agree with your wife your constellatio of symptoms doesn’t sound like ALS. It doesn’t sound like MS either. No latency isn’t worrisome for ALS

it does sound like you have a lot of issues though I am not convinced they are neurological in origin. I think it is really important that you return to both your doctors, tell them your fears and also give them a concise organized list of your various concerns. It is up to them ( especially your gp) to make a plan to address them
 

dfamlone

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So would the EMG be considered a clean EMG?
 

Nikki J

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Yes look at the emg table all normal. Look at the interpretation items 2 and 3. completely normal emg which is what matters with ALS Abnormalities in the ncs portion point away from ALS
 

dfamlone

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I’m really concerned that my symptoms match up and because I have so many I have read that sound like ALS. It really has be terrified and neurology has said there is no underlying disease or condition to explain my symptoms

So there’s no way the EMG could have been taken to early? And my symptoms don’t align with ALS? Sorry for all the questions I just have no where else to turn.
 

affected

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I'm so sorry you have such consuming fears, I can see how much it is affecting you.
Please read this post really carefully as it addresses your questions, including why the EMG was not done too early.

You seem to be happy to accept that you don't have other issues/diseases all the other tests ruled out, all except ruling out ALS. That seems, to me, to be something to discuss deeply with your doctor. Why have you focused in on a terminal disease, when you don't have the hallmark symptoms, and tests support showing it is absent? That could really help the doctors move forwards with you more effectively.

I hope you can get some resolutions and help soon.
 

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Your symptoms do not, in fact, "match up" with ALS. The EMG was not done too early. The idea that no underlying cause can be found for your symptoms isn't some kind of scary thing. It's good. It means that you can address them one by one to the extent possible, like getting a second opinion on high-dose Prilosec, which can have adverse effects over time, treating allergies and dry mouth, therapeutic massage, daily exercises to mitigate CTS, etc. There is much you can do to feel better. Worrying about ALS isn't on that list.

Best,
Laurie
 

dfamlone

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Thank you for responding, After reading the forum and the internet a lot the symptoms match as just about everything else has been ruled out. Maybe I just let fear get the better of me. I guess I was just looking to get some feedback from the forum about my symptoms. Thank you for the pin my wife has read it to me multiple times ti try and help.

Thank you Laurie. I really appreciate your feedback and reassurance.
 

affected

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This is why you need to go over this with a doctor - you have trawled the internet, cherry picked all kinds of stuff, and decided for yourself that your symptoms match ALS.
You then tell us and we say, no they don't actually match ALS.
You then proceed to try and convince us they do ...
Please, take it up with your doctor now, we can't help further.
 

dfamlone

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Sorry I’m not trying to upset you. I’m was not trying to convince you, just answering the question that was posed that was all. I accept your answer and actually feel a bit better with the response I have received. I thank you again for your response.
 

dfamlone

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So I wanted to give an update. I’m hoping this will help someone as post like what I am about say helped me a bit. Let me start off by saying thank you to those who responded and gave me words of encouragement.
So after my last post, I was really going through it, I really convinced myself that I had ALS, and nobody could tell me anything different. My mother, wife, the kind individuals here, even the doctors couldn’t convince me. I fought to get a second EMG, the doctor that did the first one told me it was to soon but I fought to get it anyway. I thought for sure she was going to tell me I had als. She did a lengthy EMG, my legs, arms, tongue, and my entire spine, and she looked right at me and said I do not have any evidence of ALS on this test and again said I just had carpal tunnel. I felt some relief but I was still having symptoms and a lot of muscle twitching. I was in a constant state of anxiety, stress and self checking ALL DAY long.
Here is the important part: in between this I saw my Gastro doc, (my Gastro doc is amazing he does more for then my regular pcp even the neurologist) I gave him the list of my symptoms and asked him flat out if it sounded like ALS he immediately said no and that my symptoms were all over the place, he said it sounded more rheumatoid and that most of symptoms are likely anxiety EVEN the muscle twitching, he even went as far as to break down how the anxiety would cause the muscle twitching. For years he has been wanting me to go on a antidepressant for my IBS but I always refused, and he bought it up again, so I gave in and started to take it. It took about three weeks to start feeling the effects. The medicine coupled up with reassurance of the second EMG, allowed me to relax, so that along with taking vitamins (vitamin D and B12) and most importantly Magnesium, 98% of my symptoms went AWAY. I still get the odd eye twitching here and there but I’m starting to notice it’s when I’m really tired. Even the perceived muscle weakness and trouble swallowing/lump feeling went away.
Anxiety/Stress was the culprit, I’m still scheduled to see the Rheumatologist next month and I was also scheduled to see Nuero at Duke but at this point I’m going to cancel the appointment. I was even going to travel to the Mayo Clinic.
I hope this helps someone who maybe suffering with symptomatic anxiety, thinking it’s something else.
With all that being said (I apologize for the long post) I want to thank everyone and I have donated as well. I keep all of you and your loved ones in my prayers, and I pray one day that a cure will be found for ALS. This will be my last post as I will be leaving the forum. Again Thank you all.
 
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