Help - I think I may have ALS?

Hi there,

My description is somewhat long, but I will try to be as abbreviated as possible.  I am a 25-year-old femaleCondoms
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Female sexual dysfunction, and my symptoms began about a year ago when I started experiencing uncontrollable muscle jerks all over my body, all throughout the day.  This was accompanied by an aching pain behind my right eye, and some blurredVision problems vision along with dizziness.  After about 3 months, the symptoms subsided.  About 6 months after the symptoms subsided, they returned again.  This time I visited my General Practitioner who sent me for an MRI of my sinuses and of my brain.  The sinus MRI showed nothing significant, but the brain scan showed 3 "non-specific minimal punctate foci of T2/FLAIR hyperintensity, two in the periventricular white matter adjacent to the posteriorAnterior vaginal wall repair
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Ultrasound, normal fetus- ventricles of brain, and one at the inferior left frontal lobe."  Based on these results, my GP wanted to test for Lyme Disease firstFirst progesterone mc10
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First-progesterone vgs 400 blood test came back inconclusive for Lyme, so another test was done which he said showed acute Lyme Disease.  (I was also diagnosed with cluster headaches at this time).  However, I was not convinced of this diagnosis as I do not recall ever being bitten by a tick or having flu-like symptoms in the recent past.  I visited two other Infectious Disease specialists who ran two seperate blood tests, both which came back NEGATIVE for Lyme.  Blood tests were also done for Lupus, and a number of other diseases, all of which were negative.  I then visited a Neurologist for MS.  He did not see anything overly-alarming in my brain scan or in the clinical tests that he did, and told me to come back in 6 months for a follow-up MRI.  

Here is where my ALS worries come in...In the month or so since I visited the Neurologist, my muscle twitches have worsened and I have developed a significant weakness in my left leg; it feels like jello.  Whenever I rise from a sitting position I almost fall over.  I am also experiencing a flurry of muscle twitches and fasculations in this leg which have started to move to my other leg as well, constantly throughout the day.  It feels as though I have worms crawling underneath my legs.  In addition, I am now feeling these muscle fasculations in my neck, face, lips, tongue, and throat.  I also feel as if there is a lump in my throat.  I occasionally will feel tingling in my hands and feet, and I will sometimes have foot cramps in the left foot.

This has been a complete medical mystery for me and I am very frustrated.  I do not even know what my next step should be, as I feel like I have had almost every test performed, all which showed nothing aside from the brain scan.  I know ALS can take years to diagnose, but I am hoping that you can tell me from your experience whether my case sounds like possible bulbar onset, or something else.  I appreciate any insight.

Best,
Carol

[mature_enough]

I hate that you are describing that the weakness is spreading. That's what happened to my "paw paw" He has ALS. His was a unique case where the symptoms kind of started backwards. The first muscle to give out on him was his tongue. He began to slur his speech. He was then misdiagnosed with having a stroke. The next thing that started was his weakness in his legs, he began to fall or almost fall over every time he would rise from a sitting position (like you described happening to you) unfortunately, since his tongue was the first muscle to stop working, he was unable to tell us how he felt. So I have no way of knowing about the “worms under the skin” feeling. I am sorry. I would definitely follow up with your doctor. I hope they find out these symptoms are not ALS. I’m sorry this even has to be a worry for anyone. You are in my prayers. I hope this helped.