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ALS, cervical spondylosis, Lyme, or other?

by steller, Apr 13, 2008 08:47PM
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), weakness in my legs, pain in the back of my neck / upper shoulders / back of head along with noisy joints in those areas, occasional jaw pain, 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.  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.  I get chest pain now and then which is 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.

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 gets rid of the jaw pain, but is only moderately effective on the "marble mouth" syndrome".  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.

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 perhaps 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).

Please help with any suggestions, thoughts, or comments!  I'm confused what to do next, and I think my GP needs prodding.

Thanks.
Member Comments

by patsy10, Apr 13, 2008 09:16PM
To: steller
I have almost exactly what you describe.  I've had it for 3 years.  I also had a severe bout of these symptoms many years back after 3 bullseye rashes.  It lasted 5 years and responded to antibiotics. I have been to numerous neuro's, had all the tests and all came back normal.  I have been treated with antibiotics for possible lyme and guess what, I improve greatly on antibiotics.  I have never tested positive for lyme but had the rash.  I can say I got nowhere with neuro's.  Most GP's don't know much about lyme.  The testing is very unreliable.  I don't know if you have it but your symptoms are certainly abnormal and you have risk factors for lyme.  You may want to consider seeing a lyme-literate doctor for an evaluation.

by PaulMD, Apr 13, 2008 10:13PM
To: steller
Hi steller!

First of all I want to congratulate you for doing the right things: asking and researching about what you are experiencing.  I may not be able to be of much help but I can say that lupus may be the least of your worries as it is very uncommon in males, and your symptom constellation does not seem to jive with lupus.  I am more inclined to think of a thyroid condition (tremors, choking sensation, insomnia, fatigue and all the pain).  Ask your GP if you can be worked up along this line, and also along the lines of Lyme's (since you did a commendable job in researching this).

Most importantly try to look for a doctor who would listen. Present to him what you think (specially ALS, Lyme, etc) and ask to be worked up.  If your doctor gets slighted or apathetic for some reason, then look for another.  It would really require a good patient-doctor relationship to find a solution to these complex conditions. I hope you get well soon. Regards...
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