Very scared

[Kfitz]

Hello all,

I have read the stickies and have done a lot of reading before posting. I really appreciate you taking the time to read and respond to my post.

I am a 31 year old female.
My symptoms came to my attention in late November. I would get up off the couch after a show or movie and notice that my left knee would buckle. I remember a vague pain, thinking maybe I pulled it somehow. That continued until around Christmas time. Then I started noticing weakness in my left leg and slightly in my right. Our house has a lot of stairs and I was constantly being reminded of my weakish left knee.

Progressively the weakness in both of my legs got worse. I would get out of bed and be very shaky, walk down the stairs and feel shaky, all around my legs felt tired. I would get a few shooting and throbbing pains at night in bed. My husband and I had yogurt for breakfast and I completely choked on it when I ate it. Thought it was strange, never thought about it again.

I went to my primary care dr. Feb 3rd for the first time and she did this ABI test which showed o had “stiffness” in my legs. She said the test measures blood flow and I may have peripheral artery issues. I am thin and eat healthy, mind you. I don’t exercise, though. This sent me for a whirlwind.. she sent me with a referral for nuero and vascular.

I saw a nuero P.A. the following Tuesday. He said my exam was normal, but because of my distress he scheduled EMG and lower spine mri (for a pinched nerve). That night I had major anxiety and felt throbbing pains and shooting pains in my legs. I went to the ER and they did a sonogram of arteries and veins, which ruled out PAD.

After this my anxiety hit the roof. If it isn’t PAD, what am I dealing with? On comes the muscle twitches. They began all over my body relentlessly. I had a drink of soda one night and choked on it. Google my symptoms, and I’ve been panicked thinking I have ALS ever since. I have had full blown panic attacks, with hyperventilating and body shakes, and have barely been functioning. The anxiety consumed me.

I went back to my primary care the 21st. When I woke up I felt as if I couldn’t walk. I was scared to go down all of my stairs. I then felt as if I had 20lb weights strapped to my legs. She had me call neurologist, he told me to go to ER. I did just that. When I got there they thought something was very very wrong. I couldn’t walk, they would touch me and my legs would shake profusely, my reflexes were very brisk, Clonus in right ankle, positive Hoffman right hand, but 5/5 strength everywhere. They did mri of whole spine and gave me a Xanax. Spine was fine. Xanax stopped the twitching and I slept for 5 hours and woke up able to walk again, weakly, but walking.

Neuro team came did another exam and said my reflexes now normal and my exam normal.. did still have unilateral Hoffman. Dr assured me no Als and sent me home. I tried to feel better, but the Hoffman sign scared me and the dr dismissed everything as anxiety.

Since my hospital stay every time I eat I feel as though food is stuck in my throat. I have been extremely conscious of swallowing and now fearful to eat. My doctor got me an appointment with nuero muscular for Monday morning the 27th. The doctor spent a lot of time with me and did a very thorough exam. He said my exam completely normal and my Hoffman positive on both sides. He said you do not have ALS. Suggests I see psychiatrist and doesn’t see it to be necessary to have EMG on March 30th. I am having it anyway and endoscopy on 22nd.

Since then my symptoms are the leg weakness on both sides, in the knees ankles, and now glutes feel right, twitching in legs (mostly knees), difficulty swallowing, everything I eat or drink including water gives me heartburn and causes burping, some occasional cramping in hands and feet. I have had two panic attacks in my sleep that have woken me up.

Could this all be anxiety? I was told by 3 neuro doctors I do not have ALS, without an EMG. I hate to ask for guidance, but I just can’t stop crying and feeling helpless.

 

[Clearwater AL]

You’re a 31 year old female.” Once again, I have posted so many times
about odds against having ALS so young.

You were told by 3 neuro doctors I do not have ALS,” Three Neuros!!

In another the DR assured you no ALS and sent me home. Assured !!

A doctor even suggested you see psychiatrist. That sure would help
the following sentence.

You just can’t stop crying and feeling helpless. Maybe because you
just won't except what you've been told. Almost like you're hoping
it's ALS.

Please find a doctor or one of the ones have to help you with your
serious Health Anxiety.

Post the March 30 EMG Summary/Conclusion at the bottom of
the report. Until then...

 

[Kfitz]

Hi Al,
I’m really sorry if I offended you in any way. I do understand that it is very rare, but unfortunately my family is one of those that has been struck by very rare a few times too many.

So, you’re saying if my physical exam by 3 drs (some of them abnormal, but they did eventually normalize) comes back ok, I do not have ALS? I by no means want ALS. I feel for all those that have and those that have loved ones that have ALS. My symptoms are just too much for me. I’ve never had this kind of anxiety, but as I grow weaker in my legs, they twitch and cramp, and I can’t swallow food down, and my water goes up my nose and causes burning, headaches, and ear pain, I begin to wonder I was just being dismissed as a young woman with anxiety issues. My journey started with some leg issues. I expected an X-ray and some bed rest, but that’s not where I wound up.

I appreciate you taking the time to respond to me, I really do. And I truly hope this is just anxiety and all of my tests come up good. I just fear the worst.

 

[ShiftKicker]

We are not dismissing symptoms, nor have you offended, only stating that what you have experienced does not fit the pattern that indicates ALS no matter what you may have read online.

With regards to seeking help with anxiety- it is recommended no matter what the issue is when the vast majority of a post describes how your anxiety about your symptoms is negatively affecting you. You need tools to help you with life affecting/overwhelming anxiety while you also look for answers for your physical concerns. Anxiety can cause or enhance physical symptoms, and it can take some work to untangle what may be the physical problem if you have extreme anxiety in combination with something else. Everyone deserves support when facing poor health- a qualified therapist or other professional can definitely be that support for you.

Because your symptoms do not appear to be ALS, based on forum members' experience (read here for more specifics about sensory issues and symptoms that improve and why they point away from ALS) and 3 neuros also don't see it, this pretty comprehensively eliminates ALS as a concern.

Please take care as you continue to work with your doctors.

 

[Kfitz]

Just an update. My leg weakness is still present bilaterally mostly in my knees, I am getting twitching mostly in my legs, but it doesn’t appear to be visible, and I get a lot of cramping on my hands and feet along with a buzzing sensation sometimes. The nasal regurgitation feeling and the ear pain has subsided. I do occasionally get the feeling that food is stuck in my throat after eating still. What’s more apparent now is that I’m having some jaw issues. I’ve been noticing that while I’m sleeping my mouth is opening, which has never happened. I’m also getting some jerking movements of my jaw. It snaps shut while sleeping sometimes waking me or when I’m talking it feels very spastic and snaps closed. It’s the strangest thing. No real pain or difficulty chewing though. I’m getting leg jerking in my sleep that wakes me. Hopefully this can all be explained by something other than ALS. I had a barium swallow, ent with a nasal camera thing, vocal cords checked, all came back normal. Every doctor I see says symptoms seem neurological.. neuromuscular says anxiety even with bilateral Hoffman and 3+ reflexes. My EMG is this Thursday and I’m very scared. I will post the result when I get them.

 

[Bestfriends14]

Still doesn't sound anything like ALS. Please report back after your EMG.

Take care

 

[Kfitz]

Had the EMG and have my follow up with neuromuscular at NYU tomorrow. Please let me know your thoughts. I’ve been having such swallowing issues and my jaw is so spastic. My teeth are touching when I speak and mouth is snapping shut while sleeping. I feel like my teeth chatter for no reason on top of the leg pain. I appreciate you all and we plan on donating to ALS research. It’s such a terrible disease.

 

[Nikki J]

I removed the emg because we ask that you block your name and identifying information
for other readers it was normal as was the ncs
I hope that you can get your questions answered tomorrow

 

[lgelb]

I deleted your photos because you did not redact your name. But this was a completely normal study, so fortunately, as we anticipated, you can look elsewhere from neuromuscular disease. I would advise you to circle back with your PCP and discuss next steps, which, yes, could include counseling to help parse what might be body and what might be mind. You might also see a dentist about using a bite guard at night.

 

[Kfitz]

Thank you for replies. I really appreciate your time! NYU Neuromuscular said I have brisk reflexes, Hoffman bilateral, and a positive brisk jaw jerk reflex. Is not concerned with the swallowing issues and said that the jaw spasms (contractions while speaking), jaw hypnic jerks, and sudden constant teeth hitting when speaking, and teeth chattering are not symptoms of ALS. I’ve read differently, but I’m not a doctor, so I am just going to live my life with these symptoms and hope they go away and hope that everyone around me is right.

 

[Kfitz]

my symptoms are progressing-

Started with dysphagia- where food felt like it was getting stuck in my throat after every meal. Jerking off limbs and jaw while sleeping. I’d be sleeping and my jaw would snap shut and wake me up. Then I started noticing that as I speak my jaw was moving to the left and my upper and lower teeth would hit upon “s” sounds. I had a few days of feeling like liquids were going up nose and it would create pressure in nose and ears when swallowing. Fast forward- swallowing is way worse. Food stuck every time I eat, saliva hard to swallow, teeth hit when speaking, no real slurring more of a lisp. My jaw pops in and out if I move my mouth or speak. I still get the jaw spasms. I feel like I have excess saliva pooling in my mouth and am constantly clearing my throat. I had 3 episodes in the middle of the night where my throat felt extremely tight and started choking. I had a few episodes of what felt like jaw tremors. My jaw is tight, but also feels spastic. When I speak it moves around a lot when I watch it in the mirror. I have been told I have 3+ reflexes, bilateral Hoffman, and mild positive jaw jerk. On Saturday of last week I went to the hospital due to an abrupt onset of a Parkinsonian like gait, but due to the holiday no drs were available to really access and they sent me on my way. The gait has since went away, I couldn’t even replicate it if I tried. All drs said no ALS, had EMG of legs. Should I be worried of bulbar Als? Do these symptoms sound like anything anyone has experienced? I am at a loss. Feel like a young woman being dismissed.

 

[KimT]

Have you seen an ENT to evaluate your swallowing? I'm in no way dismissing your symptoms but they really could be anxiety or you might have GERD or some other issue that is causing your swallowing problem. Also, your jaw symptom sounds a lot like my TMJ disorder that I've lived with since my jaw was dislocated in an accident.

Nothing you've described sounds like typical bulbar ALS.

Also, your gait improving after the ER visit is a good sign.

If I were you I'd either go to an ENT or go back to my primary care.

 

[Kfitz]

Hi Kim,
I did see an ENT, back on March 7th. They did not see anything with the larygnoscopy or the barium esophagram. However, my jaw symptoms were just starting and now my symptoms are worse as far as the swallowing and saliva. I’ve never experienced TMJ before, so that’s reassuring. I met with a movement specialists NP.. they mentioned something about possible dystonia.. but I’m freaking out about ALS.

My swallowing has been constantly bad (food gets stuck every meal) and I feel pressure in my nose and have to clear my throat every time I drink anything. If this isn’t a typical presentation, then that is relieving. All of the bulbar symptoms started mid February, so I feel like that is a really short time for them to start suddenly and progress, but I really don’t know. I had read something about a hyperkinetic jaw being a symptom, and that seems like it’s what I’m experiencing. I’m terrified. I have the Hoffman sign and mild jaw jerk- the EMG of legs was totally clean- they did test a ton of spots. If this was UMN it wouldn’t, show on my legs, I presume.

So, I guess my question is would my symptoms progress this rapidly in a month and a half? Would the leg EMG miss all the bulbar, and are my reflexes that alarming? I started all the supplements I could find that have any impact on ALS.

I really appreciate you! I wanted to believe the doctors, but have read far too many stories of them being wrong.

 

[KimT]

If the reflexes were brisk all over, that might be your normal. I've had brisk reflexes all my life. Also, anxiety can cause brisk reflexes. The jaw jerk reflex is just another brisk reflex and anxiety can cause that, too.

Do you grind your teeth at night? Does your jaw pop or make any sounds? TMJ is very common and also tends to get much worse during periods of anxiety.

Bulbar usually presents with slurring of words and a weak tongue. Your ENT would have noticed it on exam and so would your neurologist. It's usually apparent to others before you recognize it.

Pure upper motor neuron is PLS. That is usually seen with spasticity.

If you've already had the barium swallow, that test being normal points away from bulbar involvement.

I know you're worried but you have to trust your doctors. Nobody on our forum is a doctor so if you're still worried go back to your GP with a list of your concerns.

 

[Kfitz]

The reflexes were brisk all over and I was told not pathological.

I haven’t noticed any teeth grinding, more like my jaw is weak and hangs open, then involuntarily will snap shut. It did that for a while then I noticed when I would talk my jaw pulls left and my front teeth hit when saying certain words. All while difficultly swallowing has continued. No true slurring of words. Lots of jaw spasms, which sometimes make it hard to speak. Multiple swallows for saliva, which feels to be pooling up behind nose and mouth.

I have a brain mri happening this upcoming week and an SLP appointment where they are performing a FEES test. My follow up with neuromuscular is the 26th, only because of cancellations.