Daughter of a ALS warrior now having symptoms.....

[BEvans96]

History: My Dad was diagnosed with ALS in 2017 and passed away 2020. No other known family member has had it to our knowledge. He was only 43 African American.

My name is Bree I'm 27 years old. Currently as I'm typing this I'm having fasciculations or twitching in my buttock, calves and tounge. But they have been almost every where except my biceps. My muscles overall have weakness. Harder for me to carry groceries and losing breathe as I walk up the stairs. Randomly developed stiff neck and it's hard for me to swallow. But when I relax and smoke a joint I'm able to eat. My right hand is losing a little bit of grip. What scares me is when I wake up in the middle of the night grasping my neck because of a severe cramp and dry mouth. Just yesterday my jaw and throat began to twitch in my sleep as well. Waking me up. To give insight on when these symptoms began

December 23 I had a medical scare. A past lover told me that they had hsv 1 and hsv 2. I didn't sleep for 3 weeks I was so stressed that I cried everyday. Before you knew it I developed scalloped tounge. Then followed a sore red and white throat. It felt and still feels as if I'm biting on my tounge. My glands feel swollen. And it takes more effort for me to pronounce words. Fiance and friends believe I sound fine but I hear and feel the hoarseness. I was diagnosed with anxiety (GAD) and clinical depression because of the trauma of losing a loved one to ALS.

These symptoms became more noticeable and prominent around the same time but I've always got cramps and slight muscle twitching for the last couple years. I have a lot of prior injures that could've affect the nerves in my body. A foot injury. A head injury and when I was a kid a dentist accidentally punctured a small whole underneath my tounge. I'm aware that some studies suggest ALS onset may be triggered by viral infections or stress. Which in my case could've triggered an onset.

I went to the emergency room three times and they told me they didn't want to jump to worse case scenario. And gave me antibiotics for my throat which didn't help a month later and it's still swollen and Im starting to develop a painful stiff neck. And having trouble pronouncing words. It's taking a lot of effort.

Understand I'm apart of the ALS community and I know this isn't something to take lightly and just throw out there. But my family has been through a lot and me having this illness after losing my Dad to it will be so devastating for my mom. I'm extremely worried I can't sleep. My primary doctor told me to go back on my anxiety meds and he referred me to a neurologist, I insisted and family history of course. He looked at the tounge fasciculations and said that most people with ALS develop fasciculations after muscle atrophy but he didn't check to see if I had any atrophy. He checked my reflex which was a little over active. My heart rate is beating a little faster than normal. It's hard for me to focus I'm forgetting things when I take two shots I get brain fog and that never use to happen. My eye sight seems not as good even with my prescription glasses on. Please give me some insight !

 

[lgelb]

I'm very sorry about your dad.

I would see an ENT for a possibly lingering infection. Antibiotics are not something to throw at symptoms without a workup/culture.

But if others don't hear a speech problem, you don't have one.

I don't see any reason to worry about ALS. Going back and forth on anxiety meds can be worse than not being on them at all. And even if you're doing shots when off the anxiety meds, there can still be interactions from past use and just your state of mind.

Counseling might help since you've had a lot going on what with the herpes concern and throat issues.

Fascics per se we don't worry about. But anxiety can bring them into being, along with everything in your last paragraph. But sometimes we need new glasses and you can have that checked.

Again, I see no reason to worry about ALS. But there is much you can do to feel better. Go for it.

 

[BEvans96]

I appreciate your insight. I have one more question. I'm still convinced my stiff neck scalloped tounge, and tounge fasciculations are enough to be bulbar ALS. I've also been experiencing shortness of breathe coming up my stairs. Plus waking up to painful cramps in the neck. Please lmk if I should be concerned I don't want to waste time thank you

 

[Nikki J]

No that is not a constellation that adds up to bulbar ALS Please follow Laurie’s advice

 

[BEvans96]

UPDATE: I have a neurologist appointment soon. But I am terrified. After I left the doctors and they checked my reflexes he said a little hyperflexia but nothing major. I noticed my knee was tingling and popping. Maybe a day or two later when I was driving it was hard to press the gas pedal and my hamstring felt like they were being pulled.

Prior to that I was already tripping a lot throughout the house. Still experiencing the stiff neck and hard to breathe and tounge fasc. As I tried to walk I noticed my foot unable to catch the stairs and sort of dragging along it's been causing me hip pain. My aunt whose a nurse examined and said I have a restless leg or drop foot. So I recently developed Foot drop on my right side but can still walk on my toes and heels.

What's even scarier is my right hand is now having trouble gripping things. And feels extremely weak. One day I woke up and my right side of my face was stiff and my eyes felt stuck and when I tried to look to my peripheral it was hard. Also woke up to both legs trembling and shaking. Locking up or cramping. I know it's rare but I know that it's possible for ALS to spread through different parts of the lower neuro and upper.

There's to many symptoms that exhibit weakness and muscle twitching. Also having trouble forming words and swallowing that started first so its possible walking up stairs and being running out of breathe while coming up the stairs is giving respiratory onset. It's harder for me to lift my arms and pick up stuff. I know y'all often say it just simply stops working but doesn't the muscle have to get weak first before it stops working? I this is not ALS what could this be.

 

[Nikki J]

If you can walk on your toes and heels you do not have foot drop. With all due respect to RNs they are not qualified to diagnose and the restless leg or foot drop is a silly differential that proves it.

You are in a full blown panic. Please see your gp and ask for help in stress management now. The neurologist is going to have a very difficult time doing an assessment with you like this if they do not just blow you off completely. For your own good get help

Fwiw it doesn’t sound a bit like ALS

 

[BEvans96]

Thank you so much I'll take your advice you gave me ease I don't mean to take away from actual ALS warriors but bc of my Dad's death I have horrible anxiety. I won't visit here again unless there's a diagnosis. Have a blessed day I wish I knew of this community when my dad was struggling! Much respect

 

[KimT]

Hi Bree,
I'm so sorry you're going through all these symptoms and not knowing what's at the bottom of it. I do think a lot of what you're describing might be anxiety. I'm sorry you lost your dad, too.
I think you should see your GP for some blood work and get some counseling for anxiety. You'll find a med that works for you if you work with your doctor. You can see an ENT to evaluate your swallowing. All of this sounds way too widespread to be ALS.