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ALS, Lyme, MG, or something else?
by steller, Apr 17, 2008 06:31AM
I'm a 40 year old male, and am having some fairly scary symptoms, and I'm not getting anywhere with my doctors. My current symptoms are ringing in the ears, dizzyness / brain-fog / spacy-feeling, fatigue, occasional tingling in the pinky and ring fingers (either hand), mild tremors and "fumbling" with my hands when doing fine motor activity (typing, manipulating small objects, etc), muscle pain in my legs, pain in the back of my neck / upper shoulders / back of head along with noisy joints in those areas, jaw pain, facial muscle weakness, and occasional difficulty articulating words (marbles in mouth), increased clumsiness while holding objects or sometimes stumbling when walking, a feeling of "internal tremors" occasionally (like if you were very nervous), and insomnia. All of these symptoms began towards the end of last summer (Aug/07), after I had a bad head cold and a lot of stress. The onset of each came over time. Initially last autumn, my symptoms were mostly the pain, insomnia, ear-ringing, a "choked up" feeling in my throat (which has since gone away) and fatigue. The tremors and weakness in my hands came after that, then came the tingling feeling, and most recently the aches and weakness in my legs (which came on very suddenly. All of the symptoms have varied since they began, with the exception of the ear ringing and insomnia which have been throughout.
I've got a 15-year history of occasional arthritic-type pain and swelling in my legs, feet, and sometimes sciatica. For the past few years, I've had intermittent chest pain which is typically unrelated to exertion. I've also had one out-of-the-blue bout of iritis about 5 years ago, a 6-month period of unexplained hives about 6 years ago, and two unexplained kidney-stone type episodes 8 and 10 years ago. My former and current GP suggested that I have anxiety, and that was the original diagnosis for the insomnia.
For the arthritis, I've taken NSAIDS (otc and prescription), and I've used them with success on the recent pains in my neck and upper back. I've had chest x-rays, stress tests, and EKGs for the chest pain which were all normal. For the symptoms that began last summer, I've got a mouthgard that typically moderates the jaw pain, but does not get rid of it. It hasn't done anything for the ear ringing. I had an MRI 4 months ago for the purpose of finding a tumor or MS, but which showed normally. Last month, I had a CT scan of the head and neck with contrast that showed "moderate left foraminal stenosis at C2/C3 and a mild left foraminal stenosis at C3/C4, secondary to hypertrophic facets at these levels". The only other abnormal item was a "fetal-type origin right posterior cerebral artery". All comments on the brain were normal otherwise. I've had various blood tests (don't know which ones), none of which showed anything.
I saw an ENT doctor over the winter, who did not find anything of note.
The neuro I saw initially diagnosed everything as migranes, but when I told him my ear ringing got worse when I tilted my chin upwards or stuck out my jaw, he ordered the CT scan. He suspected "neurovascular" problems. The results noted above caused him to basically blow me off, telling me there was nothing neurological in the findings. He said the stenosis at C2/C3 and C3/C4 would not cause my symptoms, nor would the cerebral artery issue.
This neuro was not interested in discussing my questions, and was not interested in suggesting my next step - other than going back to my GP. I am very worried I've got the beginnings of ALS, and the other things are just incidental and not related. Or could the ear ringing have been an early sign of neck and jaw muscle deterioration? Or perhaps this is cervical spondylosis, due to the tingling (but some of the other symptoms don't fit this, do they?). Finally, I wonder about Lyme Disease or Lupus, both of which are "great imitators". Lupus seems to fit with some of my earlier symptoms (auto-immune), whereas Lyme seems to have every symptom in the world (and I have a cabin in an area with ticks carrying Lyme, although I never had the telltale rash).
I'm going to see my GP and ask for him to get me an EMG and NCV test on my forearms (for my trembling hands). Do they also do these tests on jaw and face muscles? These are the two areas that I perceive to be most affected. Please help with any other suggestions, thoughts, or comments!
Thanks.
I've got a 15-year history of occasional arthritic-type pain and swelling in my legs, feet, and sometimes sciatica. For the past few years, I've had intermittent chest pain which is typically unrelated to exertion. I've also had one out-of-the-blue bout of iritis about 5 years ago, a 6-month period of unexplained hives about 6 years ago, and two unexplained kidney-stone type episodes 8 and 10 years ago. My former and current GP suggested that I have anxiety, and that was the original diagnosis for the insomnia.
For the arthritis, I've taken NSAIDS (otc and prescription), and I've used them with success on the recent pains in my neck and upper back. I've had chest x-rays, stress tests, and EKGs for the chest pain which were all normal. For the symptoms that began last summer, I've got a mouthgard that typically moderates the jaw pain, but does not get rid of it. It hasn't done anything for the ear ringing. I had an MRI 4 months ago for the purpose of finding a tumor or MS, but which showed normally. Last month, I had a CT scan of the head and neck with contrast that showed "moderate left foraminal stenosis at C2/C3 and a mild left foraminal stenosis at C3/C4, secondary to hypertrophic facets at these levels". The only other abnormal item was a "fetal-type origin right posterior cerebral artery". All comments on the brain were normal otherwise. I've had various blood tests (don't know which ones), none of which showed anything.
I saw an ENT doctor over the winter, who did not find anything of note.
The neuro I saw initially diagnosed everything as migranes, but when I told him my ear ringing got worse when I tilted my chin upwards or stuck out my jaw, he ordered the CT scan. He suspected "neurovascular" problems. The results noted above caused him to basically blow me off, telling me there was nothing neurological in the findings. He said the stenosis at C2/C3 and C3/C4 would not cause my symptoms, nor would the cerebral artery issue.
This neuro was not interested in discussing my questions, and was not interested in suggesting my next step - other than going back to my GP. I am very worried I've got the beginnings of ALS, and the other things are just incidental and not related. Or could the ear ringing have been an early sign of neck and jaw muscle deterioration? Or perhaps this is cervical spondylosis, due to the tingling (but some of the other symptoms don't fit this, do they?). Finally, I wonder about Lyme Disease or Lupus, both of which are "great imitators". Lupus seems to fit with some of my earlier symptoms (auto-immune), whereas Lyme seems to have every symptom in the world (and I have a cabin in an area with ticks carrying Lyme, although I never had the telltale rash).
I'm going to see my GP and ask for him to get me an EMG and NCV test on my forearms (for my trembling hands). Do they also do these tests on jaw and face muscles? These are the two areas that I perceive to be most affected. Please help with any other suggestions, thoughts, or comments!
Thanks.
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