39 mom to two young girls, very worried

Jen800

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Hello, and thank you in advance for taking the time to help me with my concerns and for this helpful forum. I’m 39, a mom to a 4 year old and 22 month old. I have been having twitching all over my body for 6 weeks now. It started in my back, then moved to my legs, feet, arms, hands, shoulders, face, head, belly, under ribs… everywhere. It’s so disturbing I can’t sleep at night now without a sleep aid.

I did see a neurologist about two weeks ago and my initial exam was good—good strength and reflexes.

but then soon after that appointment, about two weeks ago, I started having trouble swallowing food. I’d have to swallow foods 2-3 times, and sometimes it feels like food is still on my tongue after I get it down but nothing is there. I also find it harder to chew a bunch of small items at once—a bite of Mac and cheese for example just seems harder to get to the back of my mouth, if that makes sense, and swallow it. I can still drink fluids. I don’t have any speech issues but I have felt a pressure in my chest and a swollen lump feeling in my throat that made it feel like I wasn’t able to speak as loudly yesterday. Every once in a while I think I sound slightly hoarse or like the end of a word sounds a little squeaky if that makes sense? I also have that feeling of food stuck in my throat even after drinking water. I’ve also had moments when I’m not eating or drinking where it suddenly feels hard to swallow and I can’t swallow for a second. Just very scary. I’m very worried this is my first sign of weakness. I honestly now feel worried to eat.

and now, my hands and fingers are having a lot of pain/cramping when I go to do just about anything. Holding a mug yesterday or my phone or trying to type a text felt painful sometimes and I’d have to stop and rub my hand or shake it out. I had read pain isn’t normally connected to ALS but then I read a story where a woman said her first symptom was her hand cramping when trying to write out xmas cards and she couldn’t hold the pen and I’m very worried now.

i have also been getting these cramps in my calves or thighs when just walking about my house.

All my bloodwork has been done and I’m not low or high in any nutrient. I am taking extra magnesium at suggesting of neuro but it hasn’t touched the twitches and I have them almost constantly somewhere in my body.

I have a neuro who I’m reaching out to, but I also just am hoping for some reassurance until I hear back from him…

also… I was first in line to get the Covid vaccine. I received Pfizer end of April/beginning of May. These symptoms started in August…

many thanks for your time, care, and understanding.
 

Nikki J

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Hi
first of course check with your doctor as you always should when concerned about your health.
second make sure you read this Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

lastly twitching is meaningless, you had a normal neuro exam two weeks ago yet now report symptoms from head to toe. Aside from the fact that much of your description does not sound like ALS, ALS does not start in multiple areas at once It starts in one area like a hand or foot or bulbar and gradually spreads. Even the most aggressive cases don’t go from fine to full involvement in 2 weeks
 

Jen800

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Nikki, thank you so much for taking the time to write back to me. I really can't tell you how much I appreciate it.

I did read through the Answers to common questions before posting. I do have a few follow-up questions that I would greatly appreciate your thoughts on.

I have a very severe worry of bulbar onset. In your article on what to read before positing, it says that slurred speech is the first sign. Is that always the case? If so, I can stop killing myself with anxiety!! I don't have slurred speech, but I do notice trouble swallowing small particles of food... or at least it seems like something is off with what's going on with my mouth/throat. Sometimes they seem to just be stuck in my mouth (for instance, tonight, I had a very few small specs of carrot that just didn't seem to go down, or a piece of rice, etc.) A few nights ago I ate a bite or two of my kids mac and cheese and i really struggled to swallow the little noodles. I can drink fluids, eat a peanut butter sandwich, bananas, etc... but these odd little bits of food almost seem like my mouth isn't getting them to my throat or something and it's really scaring me that something is wrong with my tongue/throat. I'm just so worried. My jaw also started popping yesterday, and now my jaw hurts when I chew (left side). I am trying to stay calm since my speech isn't affected...

Thank you for noting that the fact that I have the twitching throughout my body and lots of weird cramps and aches in my hands/wrists, definitely points toward BFS, not ALS, since it's all over and not starting in one spot.

But the swallowing issue is just so scary for me.

I did just have an EMG done but they only looked at my left lower body with the needle. It was clean. They didn't do anything to rule out bulbar. I did ask my neuro if they could go back and do an EMG of my throat for me given my current symptoms (I've told him I have had trouble with swallowing solids sometimes, where i have to swallow more than once and/or drink water to get it all down) and he doesn't think it's necessary yet. He said to let him know if symptoms get worse in the next few months. In the meantime, I've very scared and worried. Thank you again for your kindness and help.
 

Clearwater AL

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Jen, you wrote.... "he (Neurologist) doesn't think it's necessary yet."

He is a highly educated highly trained specialist. In so many words or few...
he saw no evidence of Bulbar ALS. If he had any concern... he would have
scheduled another EMG to cover himself... so, he was confident in his
opinion that another EMG was not needed.

"He said to let him know if symptoms get worse in the next few months."

If so, he'll most likely refer you to another specialist.

Maybe you might share what Neurological Center in the Philly area you
were seen by. If you decide to get a second opinion we have members who
can direct you to the best.

But... the Mac and Cheese, little noodles, peanut butter sandwich and
bananas is as meaningless to us as twitches. TMI.

Finally, Bulbar ALS is a rare onset... usually ALS begins with a foot, a hand,
a limb. But the past month we have seen an unusual suspicious number
of posters claiming Bulbar symptoms. ALS is a rare disease.

Ask your PCP for some help with your fear, scare and anxiety.
Finally... avoid Dr. Google.

Please focus on your 4 year old and 22 month old children. Hope you
find a path out of all this so you can enjoy life forward being only 39
years old. ALS is not really in your picture.
 
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lgelb

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Jaw pain and popping are a reason to visit a dentist. You might need a night guard or other treatment for TMJ dysfunction.
 

Jen800

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Hello, thank you for your thoughts. I’m seeing neurology at Penn Medicine. I appreciate your kindness but I’m still worried that it doesn’t sound like not having speech issues doesn’t eliminate me from this awful possibility.
 

Nikki J

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your complaints of swallowing issues do not sound like the swallowing issues my family and others I know have reported. Clearly nothing we say will reassure you as your neurologist did not. You are certainly free to disbelieve us. Let us know when you get a definitive answer
 

Jen800

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I’m so so sorry, I’m not trying to bother you. I can tell you are frustrated with me and I feel terrible about that. Thank you for letting me know that having trouble swallowing tiny little particles of food doesn’t sound like an issue your family or others have reported, that is very helpful. I’m going to try and focus on the fact that there are still other foods—pb sandwiches, bananas etc, smoothies—I can still get down. But would you be able to tell me if you do still think I’d had problems with speaking first?
 

Nikki J

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Mostly speaking is first. Not always. please focus on enjoying your family
 

Jen800

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Ugh, ok. 🥲 Thank you.
 

Bestfriends14

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Why "ugh?" You don't have ALS and there is nothing "ugh" about it and everything great about that. Please be grateful for your physical health and turn your attention to your family. You no longer need to be here and that's an enviable thing.

Good luck to you and I wish you all the best.
 
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Jen800

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Thank you very much to each of you who took the time to respond. I am very sorry if I offended you in any way ... I just have been very scared and worried these last few months due to the varying symptoms. Today both of my hands were painfully cramping up here and there throughout the afternoon and evening. This has started to happen over the last week. I stilll have grip strength.... but it's very hard not to worry ....i also have cramps happening often in my thighs and calves. If I wasn't also having the twitching, I wouldn't be as concerned. Thank you all for your time. You've been more than generous.
 

Clearwater AL

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Ok Gen., you've gone from the fear of Bulbar ALS now to worrying about pain, cramps
and twitches... just over the past week. ALS just doesn't work that way.

For your own mental health you need to log off this forum, and for your family.
Why? The overall evidence you have tried to present so far just doesn't add up
to ALS. As said previously... that is great news. Go with it. Log off.

No need to reply.
 

Jen800

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Hello. I am sorry to be back here asking another question, but I truly am worried. Twice in the last three days, my left knee has buckled on me when walking around my house. I didn’t trip or fall, but it really scared me. A week previous, I had an EMG done of the same leg and they didn’t find any signs of muscle wasting or nerve issues. But I have had a lot of twitching around the left knee this week, and now this buckling has happened twice. I went for a 3-mile run this morning, and felt no discomfort in the knee, but then had the buckling issue this evening. Does ALS weakness show up like this? Little by little? Or would it happen suddenly and then I wouldn’t be able to use the joint/leg at all? Just praying this buckling isn’t related to the twitching….
 

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Jen, it's really time to talk to your doc or a counsellor about how this fear of a disease you do not display one bit is controlling you. Have some respect for the forum members who are actually living with this disease. It is no one's job to handhold this anxiety you are going through, as people here have kind of a lot going on.

There's really not much more anyone can tell you but to continue working with your doc. You don't display ALS symptoms and this is not a general health forum.

I do sincerely wish you the best in finding solutions to what is going on. Take good care and stay safe.
 
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