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.

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@naturegirl5

@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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Hello there thank you for your reply I said at the end of my paragraph that I am 17 the muscle twitches do seem to lessen when I workout but I still get scared of the muscle fasciculations as they are still there and for the tingling I usually get them while sitting down or resting for a few seconds and then it disappears. but never when I am standing up or walking. I wonder if that is how MS tingles are felt… I do get exercise but the the twitches worsen when I am anxious Idk about the painless throbbing at night though… like Its cold at night and I can feel both of my hands like palpitate same goes for right foot but never my left foot this happened in just 3 weeks might be because of weight? I am about 180-200lbs I am obese I am 5’5

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@rwinney

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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Thank you! For the response! Recently I am taking job interviews to make money but none so far🫡

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@willow5

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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Thank you! I will make sure to check it out!

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@willow5

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.

Jump to this post

@willow5 @jakegrai28 Do you mean BetterHelp.com? They only take cash via your credit card. I've read research that shows problems with this company for both patients and therapists. I do know a few people who have found therapists they connect with on BetterHelp.com but that's only anecdotal. Many licensed therapists in your own state can do virtual sessions.

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@jakegrai28

Hello there thank you for your reply I said at the end of my paragraph that I am 17 the muscle twitches do seem to lessen when I workout but I still get scared of the muscle fasciculations as they are still there and for the tingling I usually get them while sitting down or resting for a few seconds and then it disappears. but never when I am standing up or walking. I wonder if that is how MS tingles are felt… I do get exercise but the the twitches worsen when I am anxious Idk about the painless throbbing at night though… like Its cold at night and I can feel both of my hands like palpitate same goes for right foot but never my left foot this happened in just 3 weeks might be because of weight? I am about 180-200lbs I am obese I am 5’5

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@jakegrai28 Oops. I did read that you are 17 years old at the end of your paragraph and forgot that when I replied.

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@naturegirl5

@willow5 @jakegrai28 Do you mean BetterHelp.com? They only take cash via your credit card. I've read research that shows problems with this company for both patients and therapists. I do know a few people who have found therapists they connect with on BetterHelp.com but that's only anecdotal. Many licensed therapists in your own state can do virtual sessions.

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I see.. thank you!

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@naturegirl5

@willow5 @jakegrai28 Do you mean BetterHelp.com? They only take cash via your credit card. I've read research that shows problems with this company for both patients and therapists. I do know a few people who have found therapists they connect with on BetterHelp.com but that's only anecdotal. Many licensed therapists in your own state can do virtual sessions.

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Hi Helen - Yes, I do mean betterhelp.com. Thank you for the clarification.

All I know about it is I have a friend who has 3 clients she counsels through betterhelp.com and she speaks very highly about it. She is a licensed therapist. And it is affordable as opposed to in person or virtual that isn’t affordable for all.

Since I have no one-to-one personal experience with the company, maybe I shouldn’t have recommended it, but I do have lots of respect for my therapist friend who is doing a small amount of work for them.

Researching anything on multiple sites is always a good idea for anything we are going to try that is online. Thank you for your feedback.

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@jakegrai28

Thank you! For the response! Recently I am taking job interviews to make money but none so far🫡

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Hi, Jake - how are things going? Any luck on the job front? And, how have your symptoms been treating you?

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