Worried that lymes caused my als

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PhoenixShaham

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Hello everybody my name is Phoenix and I am a teenager with no family history of neurodegenerative disease. I also have no health conditions. Just want to say what’s been happening to me in the past few months. I had to postpone college due to symptoms.

Starting in July I started having viral symptoms. I had headaches, photophobia, phonophobia, and vertigo. These symptoms only lasted for a week.

The next week I had left sided chest pain, burning throughout the body, numbness everywhere, and myoclonic jerks. This also lasted for 6-7 days.

Now starting July 16th of this year I started twitching in the left leg and cramping. I think in a few days it jumped to my face and neck on the left side. I began having swallowing issues immediately. My voice also became hoarse. At the time many of my fasciculations were mainly non visible. But I would get around 100 per minute. I went to three ENTs and they didn’t find anything.

I went to a general neuro and he recommended me to multiple specialists since he really didn’t know what was happening. My mom was super anxious and somehow I was able to meet an ALS specialist very quickly. He ordered an EMG, Barium Swallow, MRI of the Brain and C-Spine with contrast, and loads of blood work for hundreds of neurological disorders. On clinical exam he noted left sided ptosis and fasciculations in the calves. My reflexes and limb strength were normal. MRI of the brain and c-spine with contrast was clean. All my blood work clean. I thought I’d maybe have MG or peripheral nerve hyper excitability but that was ruled out. My EMG was clean however barium swallow noted silent aspiration of thin liquids. He told me to keep an eye on it. I have dysphagia but because of my unusual presentation he did not suspect ALS. I wasn’t slurring at all. My speech was super articulate but it was hoarse.

Few weeks later at a hospital in TX I had a lumbar puncture done. It was normal. At this point the fasciculations are now visible in my arms. I also have fasciculations in the face that never stop. The neurologist at the hospital noted thenar atrophy but because of the EMG he just didn’t care. I started on doxycycline for suspected lymes. I took it for 10 days with no improvement.

My swallowing got worse. I started choking on liquids and solids. However I transitioned into a thick liquid diet and just had smoothies. It’s now December. I have somehow been able to increase my weight. My fasciculations are visible almost everywhere. I get maybe 120 per minute now. They are mainly on the left side and are continuous. By continuous I mean there has not been a second since July 16th where I have not had one. My facial twitching also became visible and is throughout my face like a mask.

I went to a neuromuscular specialist at the Texas Medical Center. They noted residual left sided lower motor neuron palsy. My reflexes were preserved and strength. However they noted mild limb spasticity and gait abnormality. They again didn’t think it was ALS but said I was maybe exposed to a neurotoxin. They ordered an EMG in January. Since I was anxious I asked if I could be tested for the FUS gene mutation. They said it wasn’t necessary but for my sake they’re testing me. Im still waiting for results

I don’t know how relevant this is but I started functional medicine. My mitochondrial dysfunction and oxidative stress were 0. My glutamate level was also low. I showed elevated lead and gadolinium. I also showed some mold toxicity.

I had a Lyme test done recently and I tested positive.I fished a lot this summer in freshwater areas. But I showed no improvement to doxycycline. Im also scared because I show both upper and lower motor neurons. All my symptoms now are motor in nature. I have no sensory feelings. It’d been 5 months and my voice is hoarse but I’m not slurring. I also have breathing difficulty when lying down. Why I’m concerned about ALS is because of how my symptoms present. I have constant fasciculations mainly on the left side and facial weakness on the left side. My fasciculations had two points in origin: my left leg and face. The fasciculations seemed to spread from my left leg and up. From my face the fasciculations went down and are now making my intercostal muscles twitch every second. My stiffness is mainly on one side so I tilt my neck to the right. My left hand is stiff thus making it hard to open bottle caps. But the main thing that worries me is how my fasciculations used to be non visible and now they are visible everywhere. They really disturb me when I try to sleep.

I’m concerned that my Lyme’s caused me to trigger the FUS mutation. Again I’m still waiting for genetic testing. But I assume I have the gene mutation because all my symptoms line up with ALS. I’m worried I have ALS due to fasciculations, dysphagia, left face weakness, hoarseness, mild spasticity, and shortness of breath.
 

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Lyme doesn't cause ALS.
Sounds like you are seeing all the right specialists and hopefully they can sort out exactly what is the cause.
Even though you have some worrying things going on, it's not an ALS pattern. I would think with all these doctors and tests it would be them worried if it was ALS, but it sounds like they are looking in certain directions and it is you thinking ALS.
 

lgelb

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There are several causes of LMN facial weakness and I am sure they are being ruled out. ALS doesn't fit the patterns you describe.

Are you still on smoothies only?

Even if you had Lyme, which a positive test doesn't mean 100%, it cannot trigger ALS. And where are your parents in all this? The functional medicine stuff you describe is quackery so I would not think another moment on it, nor waste any more money.

You're not asking any questions, just presenting ill-founded conclusions. So all I can say is that there is no reason to worry about ALS based on what you have presented, and a systemic explanation based on the onset of symptoms you described in July is most likely, unless the EMG and exams support bulbar nerve damage, in which case there is a process to narrow down the cause, which is generally far less serious than ALS. I would try to see an [real, ISDA member, not an ND) infectious disease specialist before or after the EMG just to rule out an infectious etiology.

Best,
Laurie
 

Clearwater AL

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PhoenixShaham, Just a tip to help you through this....

Look up what each letter of Shaham means and may apply to
yourself.

You are very articulate with medical terminology for your age...
it shows you should be able to understand, communicate, and
relate with your doctors and your parents.

But as replied previously your descriptive symptoms really
doesn't fit ALS.

Work with all the doctors and hopefully you get on to a
path to enjoy life of a teenager. The wonderful years.
 

PhoenixShaham

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Hello I was just wondering aren’t my fasciculations kind of worrisome. I have more than 100 per minute with no break at all. it feels like every muscle fiber in my body is twitching every second. The one in my face is just constant fasciculations that do not ever go away. The fact that they are getting more visible now also worries me. It used to feel like worms under the skin but now I can see them everywhere.
 

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Hello, please make sure to read here: Read Before Posting

Twitching can mean so many different things, as you will read in that link. The person who can tell you more about your twitching specifically would be your medical care provider. They have your clinical history and all test results at hand, as well the medical training- so they would be in the best position to help with this.
 

Bestfriends14

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Twitching means nothing, absolutely nothing when looking at ALS and when function failure is absent. Any further questions should really be be brought to your GP as nothing you have described has anything to do with ALS.

Good luck to you and take good care
 

Clearwater AL

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My opinion, you've gone from concerns of Lyme causing ALS (which
it does not, your symptoms don't support ALS either) now has morphed
to Health Anxiety.

Below is worth a read and consideration...

Many people with Health Anxiety are often unable to function or
enjoy life due to their fears and preoccupations. They become
preoccupied with bodily functions, breathing, heartbeat, minor
physical abnormalities, dents, fasciculation, physical sensations,
pain, perceived weakness, sleep disorders and continuing new
symptoms.

Then to amplify, escalate, add more to it… Dr. Google.

*I'm wondering where your parents are with your situation.
their consultation with the all the doctors, exams and tests,
probably on their money, insurance and or co-pays.

I doubt being a teenager you're winging this alone..
 
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PhoenixShaham

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I wish I could pin it to pure anxiety. If I had pure fasciculations on their own I would not be on this forum. It’s the fact that objectively the barium swallow showed aspiration and I’ve been choking intermittently. The moment the fasciculations started I think a few days after my swallowing was hindered. Not to mention the mild spasticity, and left residual lower motor neuron palsy(demonstrating weakness) noted during clinical exam. I had a pft done recently and my fvc dropped. Again I wouldn’t be here if fasciculations were my only symptom. My fasciculations have moved in a pattern they aren’t really random. I also read that once the disturbance gets bigger the fasciculations get more visible. At the beginning my fasciculations were very fine and not visible. Now my biceps, shoulders, calves, glutes, neck, and more are twitching vigorously. It’s affecting bigger muscle groups. Good news is my genetic test came back normal so I don’t have any mutation. Bad news is I have all these symptoms. Again I’m just worried that Lymes caused neuroinflammation that triggered ALS.
 

Clearwater AL

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Once again, where are your parents with all this? Were they with you during
these exams and tests? Has a Neurologist consulted with them?

I doubt highly any Neurologist would follow through with a teenager
without a responsible adult present, who is the paying party and
matters of consent.

If you would... expand on the above before you post again.

It shouldn't be hard to do as I posted previously...
"You are very articulate with medical terminology for your age..."
 

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Your EMG was clean - that's where we are going to come at this from.
 

PhoenixShaham

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Yes my mother has been there with me for every test. These past 4 months my mom has been there for every single appointment. And the neurologist has consulted them.

I’ve read cases where the EMG was clean and people have still ended up with ALS. But again if it didn’t show up on the EMG they would have findings on clinical exam.

Weakness when swallowing and the facial muscles concern me. I remember a few days after the fasciculations started my swallowing got impaired. These past 5 months have been an absolute dread. I had to postpone college. When I started out with viral symptoms I just thought I would be fine. But when it changed so quickly to neuromuscular issues I was so sad. Ive just been left with no answers with what is happening. Some specialists say neurotoxins others say different things.

Out of all the cases I’ve ever looked into I’ve never seen ALS present like my case with initial viral symptoms. It’s what happened after the virus that concerns me. One sided fasciculations that’s are every second. Stiffness on the left side. Visible fasciculations. Facial weakness and swallowing issues. My fvc dropping.I’ve been checked for hundreds of neuromuscular disorders through blood tests and those have been clean. The thing that is so annoying are the face fasciculations every single second. There is not a second where I do not get a break.

Sorry if I’m wasting everyone’s time.
 

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It is not through blood tests that "hundreds of neuromuscular disorders" are ruled out. It is through exam, tests, and history. What we are saying is that a clean EMG with all the issues you describe rules out ALS. Whatever you're reading, from clickbait to self-delusion, isn't accurate. And you're right -- even when an early EMG very rarely is squeaky clean, there are exam findings suggesting ALS.

You're in a city with world class neuromuscular specialists, so if that's what it's going to take to get definitive answers that you can accept, whatever they may be, I'd go to Methodist or Baylor and find out.
 

PhoenixShaham

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Hi guys I'm here for a quick update on my symptoms. I have perioral fasciculations that never stop. Also bodywide twitching every second. My left hand started getting stiff in August and now its so stiff that my thumb locks up. I also just cramp easily in the hand and shoulder girdle. I have my EMG results but the doctors still do not think it's ALS. They say ALS doesn't start with photosensitivity and burning. My EMG showed acute denervation with spontaneous fibrillations in all places where the needle was placed. I've already had genetic testing for ALS mutations(SOD1, FUS, UBQLN2,etc.) and that came back negative.

I've always had bulbar symptoms and have been worried about bulbar onset. I do have trouble swallowing(aspiration/choking) and I have constant twitching in the face and neck. But I have no tongue atrophy, tongue fasciculations, or slurred speech which is very atypical for bulbar. I do have a lowered FVC however and have trouble breathing while lying flat.

I show so many atypical symptoms for ALS which always makes me think it's not that. And again I'm 19 with no history of neurodegenerative disease. I try thinking its maybe a post-viral syndrome or some sort of neuro-infectious disease affecting my motor neurons. But since I have spasticity and fasciculation it's indicative of UMN and LMN lesions. I don't know if any infection can cause UMN and LMN lesions. My reflexes and limb strength are still preserved.

So since I started with viral symptoms at the beginning and then it transitioned to sensory symptoms for a brief period of time now to motor symptoms, I always think it's some sort of infection. But my spinal tap in August was clean. Before the spinal tap I was on antibiotics for 10 days for a cellulitis affection so I'm not sure if that lowered the protein in my CSF(assuming that I had neuroinvasive Lyme).

I know it can't be West Nile since that results in flaccid paralysis. However, I know my county had an outbreak of West Nile near the time I was infected. My labs show positive IGG for Lyme but IGM is indeterminate. That shows more of a past infection so I'm really lost.

Does anyone know a neuro-infection that causes UMN and LMN symptoms? I was just a healthy kid in July and I went fishing a lot. After that I just got super sick and it lead to this.
 

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What you are asking is beyond the capabilities of a support forum for people diagnosed with ALS and their caregivers. Your doctors really are the best people to be consulting with about your symptoms and possible causes. You've been pretty thoroughly examined and ALS has been eliminated- based on all the tests you've received so far.

While I understand the urge, soliciting the opinions of strangers on the internet to help you with a diagnosis will likely not help. Your complicated medical history indicates a need for specialist attention, and the folks here simply aren't qualified to provide you the medical care you are looking for. Your doctors are the ones you need to be asking these questions to- Things like "What are the next steps in exploration, and what are the differentials?" I hope you will be able to keep working with them, as they are the ones that will be able to provide you with the most information based on their examinations and the work already done.
 
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