Fearing ALS or MS: I'm scared

Posted by nik1234 @nik1234, Feb 26, 2023

Can anyone with experience please shed some light?
I am a 36yr old female so I know I am in the ‘low risk’ category for ALS. However I can’t shake the fear because something is going on! My gp initially put symptoms down to anxiety after being attacked by a dog. However that was 2 months ago and I am getting new symptoms.

History:
- 8 weeks ago tongue fascilation a one specific spot on left hand side I could feel and see. It still makes a dent now if I tense my tongue muscle by poking it out.
- In the past week I have been having pretty consistent leg twitches and sore muscles that started in calf and now thigh.
- Sore front neck muscles that are easily agitated. Feels like I’ve been doing sit ups and straining neck muscles.
- Hands feel stiff and finger joints sore.
- I have had 2 sets of blood tests that show no deficiencies.
- I had an MRI 2 weeks ago that showed a ‘non-specific’ spot on the brain that neurologist said she wasn’t too concerned about and wants me to have another one in 12 months.
- I have another neuro app this Friday to discuss new symptoms. Do I request EMG? Any advice for what to discuss with Neurologist?

Thank you for any insight.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Third attempt to respond. I have MS, cannot control my hands. Don't think you have it. EKG, wrong test. MRIs with contrast dye, brain, spine. Spinal taps.

Is your balance off-center? Do you trip when you walk? Do you have problems swallowing? Talking? Is your eyesight ok? You can see an ophthalmologist and have your optic nerve looked at. Do you feel any tingling and numbness? Do you feel crazy when you get overheated? When you get a fever, what happens? Can you stand? Do you collapse? If you hold your arms out in front of you, is there a tremor, do they shake? Can you close your eyes and touch your nose with each hand? Do you have problems peeing? Too much? Or not at all till suddenly..
rush to the toilet. Are you constipated?

These are symptoms of MS. A neurologist would know a lot more. Your GP has to refer you to one but sounds like she doesn't think it necessary.

Being attacked by a dog would make me so frightened and shocked, I'd be scared to go out. Fear and anxiety can manifest physically, psychosomatic... the brain telling the body, holy scones, ouch. And you just hurt. For a long time, I'd imagine. Have you been prescribed anything for anxiety?

I don't know enough about ALS, but agree it's unlikely.

Much luck to you, .Not understanding or knowing what's happening is extremely stressful and maybe some of your symptoms manifest that, a vicious circle.

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The symptoms of MS are closely related to the symptoms of SS. Please check for SS.

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I had a tough week before my symptoms started, with finals exams and not enough sleep due to studying. A week later, I experienced muscle twitches (fasciculations) that started in my left pinkie toe for a day, then spread to my other leg and arms the next day. After researching my symptoms, I had a scare. On the second day, I felt lightheaded when walking outside or standing up from bed, which has happened most of the time for the last two weeks. A day later, I felt tingling in my feet, mostly in my right foot near the pinkie toe when lying down or sitting. Whenever I try to sit and rest my leg or put my leg on top of my knee, it tingles too fast after like 5 seconds. I also experience painless throbbing in my extremities like hands or feet and the back of my head at night, which matches my pulse. I have an air conditioner at night, and I'm not sure if it's related to the cold. Additionally, I've felt constipated for a few weeks now no pain but like feels hard to push out or just gassy most of the time and usually only eat heavily for one meal and one light meal and have had tinnitus and "snow vision" for about 7 years now. I've also noticed ghost vertical diplopia, which might be due to excessive digital screen time for 7 hours a day. All of this has happened in the last three weeks, with some mild joint pain or finger pain(probably from working out)or weakness. Three days after my initial symptoms, I went to the doctor, who said I was dehydrated, which I probably was, since I only drink about 2 liters of water. The doctor advised me to drink more, 3-4 liters. My blood tests came back normal except for high uric acid, which is irrelevant since I don't have any kidney or liver failures based on my blood results. I'm 17, 180lbs(obese), and 5'5". So can help but wonder could this be MS or ALS?

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@jakegrai28

I had a tough week before my symptoms started, with finals exams and not enough sleep due to studying. A week later, I experienced muscle twitches (fasciculations) that started in my left pinkie toe for a day, then spread to my other leg and arms the next day. After researching my symptoms, I had a scare. On the second day, I felt lightheaded when walking outside or standing up from bed, which has happened most of the time for the last two weeks. A day later, I felt tingling in my feet, mostly in my right foot near the pinkie toe when lying down or sitting. Whenever I try to sit and rest my leg or put my leg on top of my knee, it tingles too fast after like 5 seconds. I also experience painless throbbing in my extremities like hands or feet and the back of my head at night, which matches my pulse. I have an air conditioner at night, and I'm not sure if it's related to the cold. Additionally, I've felt constipated for a few weeks now no pain but like feels hard to push out or just gassy most of the time and usually only eat heavily for one meal and one light meal and have had tinnitus and "snow vision" for about 7 years now. I've also noticed ghost vertical diplopia, which might be due to excessive digital screen time for 7 hours a day. All of this has happened in the last three weeks, with some mild joint pain or finger pain(probably from working out)or weakness. Three days after my initial symptoms, I went to the doctor, who said I was dehydrated, which I probably was, since I only drink about 2 liters of water. The doctor advised me to drink more, 3-4 liters. My blood tests came back normal except for high uric acid, which is irrelevant since I don't have any kidney or liver failures based on my blood results. I'm 17, 180lbs(obese), and 5'5". So can help but wonder could this be MS or ALS?

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@jakegrai28 Hey, Jake, welcome to Connect. Understandably, this is alarming given your age and the type of symptoms you've been having, let alone if you're surfing the internet which can take you down rabbit holes.

Good news, your blood work came out fine and you have no pain with symptoms. Nonetheless the neurological signals can be annoying and a little scary. They could just be your body's way of telling you to chill out. We all don't respond the same to stress, ya know?

Your doctor's advice to increase hydration is important. And, assuming your B vitamin levels were checked, as they can cause symptoms you describe if too low, you may find that focusing on de-stressing (exercise, breathing, meditation, humor, positive socialization), eating a balanced, nutrious diet and better sleep hygiene help regulate symptoms.

If symptoms don't subside, a neurologist can provide further testing . Do you have a follow-up appointment with your primary doctor?

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@rwinney

@jakegrai28 Hey, Jake, welcome to Connect. Understandably, this is alarming given your age and the type of symptoms you've been having, let alone if you're surfing the internet which can take you down rabbit holes.

Good news, your blood work came out fine and you have no pain with symptoms. Nonetheless the neurological signals can be annoying and a little scary. They could just be your body's way of telling you to chill out. We all don't respond the same to stress, ya know?

Your doctor's advice to increase hydration is important. And, assuming your B vitamin levels were checked, as they can cause symptoms you describe if too low, you may find that focusing on de-stressing (exercise, breathing, meditation, humor, positive socialization), eating a balanced, nutrious diet and better sleep hygiene help regulate symptoms.

If symptoms don't subside, a neurologist can provide further testing . Do you have a follow-up appointment with your primary doctor?

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I do not, the doctor didn’t say anything about a follow up and I don’t think it s vitamin B deficiency as I usually eat a lot of eggs everyday I even have rashes from excessive B12 but yeah.. still anxious

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@jakegrai28

I do not, the doctor didn’t say anything about a follow up and I don’t think it s vitamin B deficiency as I usually eat a lot of eggs everyday I even have rashes from excessive B12 but yeah.. still anxious

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Okay, no follow-up unless your symptoms persist assumably. I understand the anxiety of it all. Well, Hallelujah finals are over! Hopefully now you can get out and have some fun. Try your best to put symptoms behind you and see how the next few weeks go. Talking to someone such as a therapist maybe helpful. Do you currently speak with anyone?

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@rwinney

Okay, no follow-up unless your symptoms persist assumably. I understand the anxiety of it all. Well, Hallelujah finals are over! Hopefully now you can get out and have some fun. Try your best to put symptoms behind you and see how the next few weeks go. Talking to someone such as a therapist maybe helpful. Do you currently speak with anyone?

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I do not speak with any therapist never did but I do have online supports like in reddit or friends and family although they did say I am kind of an hypochondriac😅

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@jakegrai28

I do not speak with any therapist never did but I do have online supports like in reddit or friends and family although they did say I am kind of an hypochondriac😅

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Ah, sometimes friends and family know or see things we may not. 🤔 A word of caution from someone who's been there...try your best not to overthink, over worry or catastrophize. These behaviors may contrubute to the symptoms you had. Which is something a therapist can help you work through.

I'm happy you have good support around you. Do you plan on following up with a therapist beyond speaking to your family and friends?

Feel free to check back in if you have concerns, questions or need support. Mayo Clinic Connect is a supportive and knowledgeable community with many people who experience feelings like you've been experiencing. I hope you have AWESOME summer plans and stay active. Are you involved in any summer camps, sports or clubs? At 17, I'm wondering if you're thinking about college?

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@jakegrai28

I had a tough week before my symptoms started, with finals exams and not enough sleep due to studying. A week later, I experienced muscle twitches (fasciculations) that started in my left pinkie toe for a day, then spread to my other leg and arms the next day. After researching my symptoms, I had a scare. On the second day, I felt lightheaded when walking outside or standing up from bed, which has happened most of the time for the last two weeks. A day later, I felt tingling in my feet, mostly in my right foot near the pinkie toe when lying down or sitting. Whenever I try to sit and rest my leg or put my leg on top of my knee, it tingles too fast after like 5 seconds. I also experience painless throbbing in my extremities like hands or feet and the back of my head at night, which matches my pulse. I have an air conditioner at night, and I'm not sure if it's related to the cold. Additionally, I've felt constipated for a few weeks now no pain but like feels hard to push out or just gassy most of the time and usually only eat heavily for one meal and one light meal and have had tinnitus and "snow vision" for about 7 years now. I've also noticed ghost vertical diplopia, which might be due to excessive digital screen time for 7 hours a day. All of this has happened in the last three weeks, with some mild joint pain or finger pain(probably from working out)or weakness. Three days after my initial symptoms, I went to the doctor, who said I was dehydrated, which I probably was, since I only drink about 2 liters of water. The doctor advised me to drink more, 3-4 liters. My blood tests came back normal except for high uric acid, which is irrelevant since I don't have any kidney or liver failures based on my blood results. I'm 17, 180lbs(obese), and 5'5". So can help but wonder could this be MS or ALS?

Jump to this post

@jakegrai28 I remember when I was in university and especially finals week. I would literally count the days until the stress of finals would be over. Fortunately for me at the time there was no internet where I could research my physical symptoms and come up with diagnoses that fed into my worries.

It's good you have family and friends who support you. However, referring to yourself as they do as "kind of a hypochondriac" isn't very helpful. Your symptoms are very real and whether those symptoms are a disease or from stress only a doctor can help you with that.

I don't know your age but it's summer so school is over the year. Are enrolled in university? If yes, I'm going to assume you are in your 20's. Imagine that I sit with you and listen to you. I'm your mom, your grandmother, or maybe a favorite aunt. I would then ask you about the exercise you get. Do you like to go for walks? I'd tell you that I know personally that when I'm very, very anxious that movement like walking helps me to feel better. And I also say that I've read in the research that exercise does help. A lot. What about swimming? In a pool or a lake? It's summer and really hot everywhere so swimming would cool you off and be good for you. Then I'd say that I'm worried about you and since you've been checked out by your doctor the next step is to find someone to talk with who will help you put your stress and worries into balance. Yes, you know what I'm going to say. A mental health therapist. I'm sure you've seen plenty of therapists on TV, or in movies and most of those. Most often those portrayals just aren't very accurate. When you find someone you really connect with you can say just about anything and won't get back any judgments or comments like you're kind of a hypochondriac. Then, being the person I am, I'd ask if you'd like my help in finding a therapist. Should I ask my friends for the name of someone they know of? Would you like to ask your friends? Or your doctor?

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@jakegrai28

I had a tough week before my symptoms started, with finals exams and not enough sleep due to studying. A week later, I experienced muscle twitches (fasciculations) that started in my left pinkie toe for a day, then spread to my other leg and arms the next day. After researching my symptoms, I had a scare. On the second day, I felt lightheaded when walking outside or standing up from bed, which has happened most of the time for the last two weeks. A day later, I felt tingling in my feet, mostly in my right foot near the pinkie toe when lying down or sitting. Whenever I try to sit and rest my leg or put my leg on top of my knee, it tingles too fast after like 5 seconds. I also experience painless throbbing in my extremities like hands or feet and the back of my head at night, which matches my pulse. I have an air conditioner at night, and I'm not sure if it's related to the cold. Additionally, I've felt constipated for a few weeks now no pain but like feels hard to push out or just gassy most of the time and usually only eat heavily for one meal and one light meal and have had tinnitus and "snow vision" for about 7 years now. I've also noticed ghost vertical diplopia, which might be due to excessive digital screen time for 7 hours a day. All of this has happened in the last three weeks, with some mild joint pain or finger pain(probably from working out)or weakness. Three days after my initial symptoms, I went to the doctor, who said I was dehydrated, which I probably was, since I only drink about 2 liters of water. The doctor advised me to drink more, 3-4 liters. My blood tests came back normal except for high uric acid, which is irrelevant since I don't have any kidney or liver failures based on my blood results. I'm 17, 180lbs(obese), and 5'5". So can help but wonder could this be MS or ALS?

Jump to this post

Hey Jake -
BetterHealth is an online therapy. It has great reviews. I actually have a friend who works for them - and I know she’s a great therapist. Affordable (though I don’t know how much.) when you are therapy shopping, you may want to check this out!

Exercise is good for everyone. Just getting out for a short walk - 10 minutes as a start - looking at the environment around yourself can help take the focus off what’s ailing you

Good luck.

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