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mickeybr

New member
Joined
Jul 12, 2017
Messages
5
Reason
Learn about ALS
Country
Mex
State
MA
City
Mexico city
Introduction

Like you, I was in this forum worried sick I had ALS, Heck! Not only that! I was 1000% certain I had ALS, there was not a doubt in my mind my days were numbered. I had stopped any plans whatsoever for the future because I was certain I would be on a wheelchair watching my days go by. But I couldn't have been more wrong.

Symptoms

Here's a list of my symptoms just to give you an idea.

-1 year of muscle twitches. I'm not talking about a few twitches here and there every once in a while. I'm talking about twitches all over! My lip, the back of my head, my biceps, my butt, my hands, especially the thenar muscle, my feet but overall it was mostly on my legs, the left leg to be precise. I have this spot on my leg where there is a gap. That spot twitches everyday when the muscle is at rest. I've even felt it a couple of time while walking. It had been progressively worst, it started with a couple of twitches every once in a while but recently it was all day every day.

- Muscle stiffness. I would wake up with stiff muscles, especially my fingers on my feet and hands but my left side would be affected most of the time. I once read an article about this girl whose ALS started with stiff fingers and since then I started convincing myself I had ALS. To this day I have sore muscles especially on my left side.

- Muscle cramping. I had a couple of cramps while waking up and the soreness would last even for a couple of days. As the rest of my symptoms this was mostly on my left side.

- Muscle Wasting. I started looking at my hands every 5 minutes because once I googled what muscle wasting looked like and most ALS websites will tell you that it starts in the hands so I would flex my thumbs and find out that I was definitely losing muscles first on my left hand and then on the right. For sure this is ALS right! To this day I can see that my hands are smaller than before. Furthermore, during a trip to Chicago I noticed that my left foot would get tired faster than the right one. Upon inspection, the muscle at the side of my foot was waay softer than the one on the right. A lot of websites tell you that muscles feel like they turn to butter once they start wasting and that's definitely what it felt like on my foot. I would start walking in my tip toes just to make sure I still had some strength on my foot, carrying water jugs to make sure I could still lift with my hands. Everybody thought I was mad.

- Muscle Weakness. As soon as I started noticing that even carrying a plate of food for more than 30 seconds would make my hand go weak I went nuts. Because that's the primary symptom, weakness. Again, if you're like me and gone through every post on this forum and on all other they will tell you that people started noticing weakness when doing everyday stuff, just like carrying a plate! It would start with the left hand but then I noticed the right one would do it as well. My both arms are weak, I can't hold them up for more than 1 minute I was struggling combing my hair, lift a chair, putting stuff on the top shelf etc.

- Throat problems. One day I read that this guy's ALS started when he was coughing and obviously as soon as the first cough came up I was like: This is it! Bulbar onset is starting. I was overly conscious of my throat while swallowing, drinking water, even while speaking, whenever I would mispronounce a word or mumble I would freak out.

Numbness- For about one year I would wake up with numbness and tingling in my hands, my leg, my fingers, etc. THIS IS NOT A SYMPTOM of ALS but I wouldn't listen. I wrote a couple of times in this forum and each time people were kind enough to answer that this pointed away from ALS.

Diagnosis

My breaking point was a couple of weeks ago when I FINALLY decided to go to the neurologist. I had played that visit a thousand times in my head, I would sit down, start telling her my symptoms and immediately she would confirm that I had ALS, there was no doubt in my mind that's what would happen. It didn't. She just looked at me perplexed that I thought I had ALS but as she saw that I wouldn't rest until I saw the EMG she ordered one.

As I live in Mexico and the public hospitals are good but make you wait forever, I went to a private hospital with the top doctors in the country. The EMG and nerve test is expensive but I didn't care because it would give me a final ALS diagnosis.

While the EMG and nerve test were being conducted I kept looking at the doctor's face, everytime he looked worried or would make a sound I would think, of course! He is also surprised that I have ALS! I was convinced he was texting my neurologist to tell her about my ALS and it didn't really help when I asked him at the end of the test how did it look like and he replied "let's wait for the analysis". I couldn't sleep that night.

Final appointment

Yesterday I went to the hospital to get the results and scheduled an appointment right away with my neuro, I couldn't wait any longer. At the appointment the doctor read through the analysis and didn't say a word until the end. She said,"there's absolutely nothing wrong with your nerves or your muscles. Your brain, spine and nerves are in tip-top shape"... HOW COULD THIS BE? How about my muscle wasting, and the weakness, and the twitching!! She said, it's all your anxiety! and now I'm convinced it is. I had to spend 1 year of worrying a couple of thousand dollars for the EMG, MRI and neuro appointments on top of the hours and hours of skimming through ALS (and MS) forums before realizing the only thing that was wrong with me was my mind. It was all in my head!

I do have higher than usual blood pressure which could lead to the twitching and my excess weight doesn't help. In the end she sent some muscle relaxants, BP medicine and lifestyle change. But the important part is that in spite of my very conclusive symptoms (in my mind). I don't have ALS.

Maybe BFS, maybe my weight, maybe my posture maybe even just my anxiety but definitely not ALS.

Conclusion

My job has me traveling 90% of the time and I'm usually away 3 months at a time, that, and the fact that I wouldn't go to a doctor had me anxious for 1 whole year! 1 year of my life in which I was convinced I would die. I stopped sleeping, I stopped thinking anything other than ALS, I would torment myself thinking, Who will take care of me? What will my friends think? How am I going to support my family? I don't want to be a bother! I don't want to die! 1 year of me bugging everyone around me with my symptoms, people were thinking I was going crazy because I wouldn't stop talking about it.

What makes me angrier is that amazing things were happening to me and instead of enjoying them I would be so anxious I couldn't notice anything around me. As I said, my job has me traveling a lot, most of the times to far away places which never in a million years thought I would be able to visit and I was stupid enough to let the anxiety get the best of me. I would be walking around Tokyo, Sydney, Honk Kong and exotic places in Asia with tears in my eyes because I would be thinking, this is definitely the last time I will be able to see this because I will die soon. Now I look back and see everything that I missed and I think to myself, How could I be so stupid not to enjoy it?

I don't want the same thing happening to anyone. If you (like I did) are visiting this forum because you're worried, or anxious or even convinced you have ALS stop! Because every post will connect the dots in your head and even if you don't have a particular symptom you will soon start showing it because the brain is sooo powerful once you are forcing it to believe you're sick that it will make it happen. I couldn't believe this but now I am convinced it's true.

So, go to your doctor, ask for an EMG if necessary but don't stop living because of your anxiety! It's always better to be sure wether you have it or you don't.

THANKS

I want to thank all the kind people in this forum who are always willing to ease everyone's minds while they're going through the diagnosis even if it clearly isn't ALS. Thank you for your time and patience. ALS is a terrible disease and you keep the spirits high in this support group. Special thanks to WendyWooG, ♥ lgelb and ♥ Atsugi.

I will be making a donation within my capabilities to the ALS foundation in my country to support all the people going through this disease.
 
Hi, Mickey, thanks for updating your story. We are glad we could help and that you are not affected by ALS. It's always good to reinforce the truth that "clinical weakness" -- being flat-out unable to do something that everyone else can do -- is the hallmark of motor neuron disease.

Thank you also for your donation, and bon voyage with the health that you are indeed fortunate to have.

Best,
Laurie
 
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