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jab1023

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Hello,

My story begins in January or February of this year. My left foot would fall asleep very quickly and that leg was numb. I'd had a previous dvt and high d-dimer, but no clot was found in that leg on Feb 1.

I began to have long periods where my heart would race and pound hard for no reason, and this caused dizziness. ER trips, cardiologist said nothing major wrong with my heart.

The numbness in the left leg kind of stayed around. I started to get "wet" feeling tingles all over on St Patrick's Day. I started herniating discs in my back and neck even though I wasn't being very active. MRIs in May found an "incidental" arachnoid cyst on my brain, but nothing else concerning. Bloods are pretty normal, always.

I had a normal emg on my worst side April25.


I'm exhausted all the time even after several hours of sleep. I had to get a sleeping pill RX after not sleeping for four nights straight a month ago.

In the last month, I've had some numbness in both legs, groin, and left foot (left leg is worse, too.) Was concerned about Cauda Equina, ER did MRIs and said no, it wasn't.

My stomach and lower back tingle/prickle. Diarrhea for a month. Throat feels like there is something stuck in it. The sides of the front of my neck pulsate. My torso and neck kind of twitch around. I asked a neurologist if it was ALS and he said no, because ALS isn't sensory and my strength is good. My hands shake.

It's been a nightmare. I'm mentally hazy and never want to get out of bed.

I saw a neurosurgeon last week who said I didn't need surgery, but I had a positive, Babinski, Hoffman, and something else. He said I show signs of cord compression but my head-down MRIs were essentially clean.

The symptoms that have me worried about ALS are slower walking, both my calf muscles twitching on their own, and difficulty swallowing along with the right side of my neck twitching on its own.

It’s pretty scary since my neuro said ALS isn’t ruled out yet.
 

lgelb

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Your story and a normal EMG argue against ALS. I would consider that low on the list. Especially since cord compression is a concern, I would get a second opinion, at which point more/different imaging like a myelogram may be recommended.

Best,
Laurie
 

jab1023

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Laurie,

Thanks so much for your reply. It’s a long story, I know.

My neurologist said I was less of a horse and more of a zebra, meaning I have such wide ranging symptoms that whatever my diagnosis is, it will be something rare.

The ones pointing to ALS would be difficulty walking, muscles everywhere twitching (back, neck, calves, etc, and the diffculty swallowing.
The parasthesias and misc stuff point more away from it.

She got me in for an EMG tomorrow. I’m scared out of my mind.
 

KimT

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Jab,
I'm glad you got in so fast. Let us know. Reading everything you posted makes me believe it is not ALS.
 

jab1023

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Thanks Laurie. Even the bottoms of my feet have been twitching. I’m so scared for tomorrow.
 

Atsugi

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All that twitching everywhere is a GOOD sign pointing away from ALS.


In ALS, the disease attacks motor neurons in the brain in more or less serial order, kinda like one at a time. As it is attacking a particular nerve, the signals from that nerve are erratic and weak. So the muscle that that neuron serves then "flutters" or twitches or rolls around. One muscle. Not the whole body.



When my wife had ALS, we saw a pattern happening--one day, a muscle would twitch, and then we knew that that muscle was going to be paralyzed soon (within a day or a week).

The people on this thread responding to you, I can assure you, are really, really well informed in ALS.

Also, you wrote: "My stomach and lower back tingle/prickle. Diarrhea for a month. Throat feels like there is something stuck in it. The sides of the front of my neck pulsate. My torso and neck kind of twitch around. I asked a neurologist if it was ALS and he said no, because ALS isn't sensory and my strength is good. My hands shake."


OK. Scratch that whole paragraph, all that stuff has nothing to do with ALS. Nada. Really. Zip.



Oh gee. now that I'm looking closely at everything you wrote. you didn't write GD thing that had anything to do with ALS.



"foot would fall asleep...leg was numb....heart would race...dizziness...."wet" feeling tingles...herniating discs...exhausted...numbness in both legs, groin, and left foot (left leg is worse, too.)...mentally hazy"


All that is NON-ALS.

Finally, "slower walking" "difficulty swallowing" deserve a special mention:
Pick one. Gonna have leg-onset ALS or neck-onset ALS?



ALS, as I pointed out above, tends to move from the top down, or from the bottom up. Plus, I really don't know what you mean by slower walking. ALS will kill a nerve in your brain, and, as a result, a muscle will weaken DRAMATICALLY and quickly. Is there one particular muscle in your foot, or maybe a group of muscles in a foot, that you blame for "walking slow"?

And swallowing. There is a particular way that ALS makes it difficult to swallow. It's unusual. Ask your doc for a swallow study.


I think you're going to get "no ALS" from your doc. If not, frankly, I would get a second opinion. I just don't see any ALS in your words.

Sleep well. You're gonna live.

Do you have a PCP? A family doc? A medical doctor--not a specialist? That's who you need to run this investigation. They will point you to different specialties in a logical way, following the evidence.
 

jab1023

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Thanks Mike. I’ve followed you on this forum a while, and you are fantastic at responding. Some twitching in my left foot was recorded but not thought to be significant. My neurologist confirmed a “normal” EMG.

I am getting MRIs and swallowing tests tomorrow. Still nervous about “bulbar” function.
 
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jab1023

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So after six months of thinking I was dying, my Western Blot is positive for Lyme according to the Mayo Clinic.

Six months.


Thank you to all who answered. It means so much to me.
 

jab1023

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Difficulty swallowing

Hello,

Last week I was diagnosed with, of all things, Lyme Disease. In Ohio. And I don't go outside. I'm an official CDC case. Before I lose everyone...

My limbs EMGs have both been good, but I worry about bulbar-onset. I have been noticing swallowing difficulty with foods for about two months. Had a consult with a speech therapist who said tongue/throat strength was good. Barium swallow was good too. I've even been referred to an ENT for an esophogram.

I was wondering how bulbar symptoms would present. I definitely have difficulty swallowing, coughing, more horseness, and muscles in my neck (maybe the SCMs) twitching.

Thanks, everyone. This is such a great forum.
 

ShiftKicker

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Mod note- merged threads. Jab, please continue posting in your original thread- it helps the folks here provide the most informed feedback if they can see your posting history all in one place.
 

affected

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Truly Jab you are good to go from here which is wonderful news.

We don't describe symptoms or you will find they will seem to appear for you. But I can tell you, after losing my husband to bulbar onset ALS, and dealing in the flesh with many bulbar ALS issues as I do support work now, you don't even begin to describe it, not even a tiny bit.

Let it go, and keep working with your doctor so they can pin what is going on and help you. Staying here is really bad for you.
 

lgelb

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You never go outside at all, jab? Any pets?

Anyway, as Tillie says, we see no bulbar ALS in what you have posted. And even if you had bulbar onset, which you don't, your limb EMGs would have shown something based on the symptoms you described.

Treat the Lyme [with a legitimate infectious disease specialist, not an "LLMD"] and likely you will feel better. Then you will be in a better position to see what still bothers you and what can be done.
 

Kristina1

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Hi Jab, while it was clear from your story something was going on, it did not sound like ALS, and your current concerns as well do not sound like bulbar ALS. I have bulbar onset myself so I say this from experience.

I will comment on the Lyme. I got a bad case of Lyme when I was 12 or 13 years old. I was living in a 2nd/3rd world country and the only antibiotics I was given were a short stint of amoxicilin (amoxicilin is NOT strong enough for lyme, nor is the 7-10 day regimen enough). So it came back even worse and I ended up getting Bells Palsy, which is where half of your face is completely paralyzed. I could not close my eye to sleep or protect it from water/dust (you never realize how much you blink/flinch in a day!). I remember taping my mouth closed on one side to play my recorder. That whole side of my face was completely slack and my mom was horrified that it was some kind of stroke. The doctors quickly saw the lyme in blood tests and I was put on IV antibiotics for weeks and steroids to reverse the paralysis in my face. I was very, very lucky that it reversed almost completely. They said some people only get like 50% back. All of this anecdote is to say that Lyme can mimic bulbar symptoms-- hell, in my situation I was full on paralyzed in my face-- but ALS is a big picture diagnosis. There is no one or two symptoms that means ALS. It is a constellation of symptoms and test results across various domains.

Good luck with the Lyme, it's a tricky beast to treat at times but it is NOT als.
 

jab1023

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Hi Kristina,

Yeah the difficulty swallowing has happened for a couple months. I go into coughing fits sometimes up to an hour after eating too, and sometimes throw up. It’s been pretty scary. If I swallow even saliva, you can like hear it go down after a second (shudder)

I have 24 days of doxy and am on day 7. So far no IV treatment though I did ask about it.

Thanks again guys for the replies!
 
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