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Old 04-10-2007, 09:25 PM #4 (permalink)
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City: Indianola
State: IA
Country: US
Posts: 3
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Nope, we have not been to an ALS clinic. I recommended it to them about 14 months ago, but they pursued a pediatric neurologist, who ended up not being able to make a diagnosis. Yes, she has had 3 LPs; 2 of them showed a mild CSF-pleocytosis + a high titer for mycoplasma pneumoniae. The titer was 1:640 (normal range = <1:10). However, she has had no cranial nerve neuroapathies nor cognitive changes. They live in NW Iowa. I'm assuming by "DT" shot you mean Dip-Tet? I don't think she had a shot prior to that. We did look into the thiemerosol-mercury in flu shots, but there was about a year-and-a-half from the shot to symptoms.
They did find a lot of mold in her blood and in the house. After moving out of their house and IVIg's, there were no improvements. However, I believe the mold did play a role, to what degee, I don't know yet. I think the bacteria and the mold interacted in a way that changed the clinical course.
Paula-Jane, as far as convincing myself this isn't ALS- I don't know what else it could be other than than infection. Maybe that's what you were eluding to, but sometimes a person needs validation from others who know what the heck they're talking about, so it was good to hear that from you.
One thing that I find very interesting throughout all of this; she steadily progressed from April, 2005 - Feb. 2006. She was vented about this time last year. From then until November, 2006, she was able to eat and talk without problems. Then, after starting Zithromax, she ends up producing massive amounts of mucous running from her nose and in her throat. She can't swallow anymore and it's getting tougher to understand her. It's strange that for 8 months she steadily progressed to not walking and then the progression suddenly stopped. Then, after 8 months of eating and talking we begin Zithromax and she can't anymore.

She tested negative for antibodies to myelin basic protein twice and all ganglioside antibody testing was negative. The only thing she tested positive for was antibodies to acethycholine. We thought it was Myasthenia Gravis at one time, but that got ruled-out. I know that a researcher in Texas discovered a neurotoxin associated with mycoplasma pneumoniae, so I'm wondering if there's something to that.
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