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Lyme vs. amyotrophic lateral sclerosis

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Posted 2/7/2014 1:28 AM (GMT 0)
My doctor believe I could have Lyme, but without proof my mind wanders to other conditions. I have read that Lyme and ALS can be similar. I would consider myself to have neuro-Lyme (and I do hope that's it over ALS) but my Igenex only came back with indeterminate bands of 39 and 83-93 and a positive 41.

I have POTS and most of my symptoms are small muscle spasms throughout the back of my head to my toes.... constant strange "neurological wave" feeling that I can not describe to anyone. Constant ringing in one ear and nausea (although a lot of the nausea can be contributed to POTS).


Has anyone ruled ALS out and had a diagnosis of Lyme? I am reading it can be more common than I would think.
Posted 2/7/2014 1:58 AM (GMT 0)
Your bands are specific to bb so considering the symptoms and bands an llmd would most likely DX you with Lyme or Lyme like infection. ALS is a disease of clinical weakness and does not wax and wain it aggressively gets worse. People with ALS typically don't know they have it until one day they can't tire their shoes, pick up their coffee mug or walk up the stairs. Muscle spasms and twitching come late in the disease and you would certainly know if you had it by now. Also twitching would not have been your main concern. My doctor said twitching is not diagnostic of ALS and that I actually had too many symptoms for it to als.. TWITCHING WITHOUT WEAKNESS ISN'T ALS. and actually noon of your symptoms sound als like. I had my scare like you but as the months went by and nothing progressed i was at peace know i was dealing with a different monster. Hope that helps you. Also as much as you might want to please don't Google symptoms. Never a good idea haha...

Post Edited (Will228) : 2/6/2014 7:53:55 PM (GMT-7)

Posted 2/7/2014 2:04 AM (GMT 0)
Welcome Joyful! I'm sorry you're going through this stuff, but glad you found us...If you haven't already, check out the new to Lyme thread(very top post). It has an in depth symptom list, what the bands mean, and other info you might find helpful.

Band 41 is the tail of a spirochete, and I believe there's only a handful of infections(hopefully someone corrects me if I'm wrong) that are spirochetes, like tuberculosis, Syphilis, ..., so if you can rule those out, then I would focus on Lyme being the culprit.

There's a member on here who's husband was misdiagnosed with ALS, and it was really Lyme, so it is definitely possible. Her name is Cat53 I think. Hopefully she'll be on to give you some more insight.

The best course of action IMO, is to seek out an EXPERIENCED LLMD. The good ones will make a clinical diagnosis regardless of tests. People here might be able to help you find one if you decide that's the route you want to take.

Hang in there dear...it's scary, but the people on here will try to help you as much as we can!
Posted 2/7/2014 2:40 AM (GMT 0)
My mother died of ALS, and I do think she had ALS, despite the fact that she and I had both been bitten by numerous ticks.

The thing is, she went downhill swiftly after her diagnosis, and she had the paralysis of mouth, vocal cords, throat and esophagus that I never experienced. ALS tends to be either mouth, speech, etc., or paralysis of legs and feet. Some victims of ALS end up completely paralyzed, with breathing tubes. As for my mother, she had all the typical symptoms of ALS.

Margaret
Posted 2/7/2014 4:20 AM (GMT 0)
"Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.

The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.

As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.

Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected."

I'm sure you've read these kinds of things. I'm
Sorry you it's be so scared, I'm
No dr but from what you describe it doesn't scream ALS.
Posted 2/7/2014 5:00 AM (GMT 0)
Of course, I have trouble tripping and dropping things all the time; I also have slurred speech, muscle cramps, and twitches.

But in ALS, the body does progressively become weaker and more paralyzed over time. My mother got to the point where she could no longer talk, chew, drink, or swallow.

Enough said.

Margaret
Posted 2/7/2014 5:01 AM (GMT 0)
Oh, when I said, "enough," I meant for me, not for anyone else reading this thread.

Margaret
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