Tongue and Mouth wasting - How common? I am running out of TIME:(

[e138]

Hi everyone, I'm a 27 male insured by Kaiser. I am so scared of prematurely leaving my sister and mother. SOrry I just broke down, it just hit me.

ALS has already been ruled out, comprehensive tests have been done and I don't think I have ALS either. No MS either.

Main Symptoms:
Since Oct 2011 (at least first noticed):
Burning pain on palms, feet, back of mouth.
[b]Atrophy seen in tongue, under the tongue, tonsils, opening behind tonsils, roof of (soft palate), facial muscles, around the eyes
[/b], and also full body wasting in limbs, everywhere else.
Shooting drilling pain in trapezius (since 2006)
Blurred vision, constantly tearing up, noise sensitivity / like hyperacusis.
Had 3-4 bouts of pink eye since Dec 2005. Very concerning

Original symptoms:
2004 - it all started with a severe right TMJ pain
2005 - trapezius pain started; very bad conjunctivitis
2006 - rapid diffuse hair loss
2007 - massive acute headaches
2008 - same; strong smell in urine
2009 - same
2010 - foamy urine started; 2012 tested "normal"
2011 - muscle wasting rapidly progressed

Just started taking:
100mg x 2 Doxycycline for acne (could this work for Lyme too? I'm thinking of switching to Azithromycin.
PQQ, CoQ10, Magnesium (2 hrs apart from doxy),
Grape Seed Extract
Taurine

[b]My Questions:
[/b]
[b]1. Has anyone also wasted inside the mouth or just limbs and skeletal muscles? How common is it here among Lyme patients?

2. Can anyone recommend a doctor within the Kaiser system, North California? I know the horror stories. I was hoping there could be at least one good doctor :([/b]

:(  :'( Please keep me in your thoughts. I wish you all the best of health and never to experience what is happening to me.

Post edited by: emp185, at: 10/28/2012 11:04 PM

[youvegottobekidding]

It sounds as if you need to get onto a motor neurone disease forum.
On this forum we know all about lyme disease and other tick borne diseases, and you probably won't find the detailed knowledge you're looking for.
Good luck!

[ice889]

also the blurred vision i didn't think was a symptom of a.l.s either?

[ice889]

somewhat, but also was confused by your post as i never knew any motor neuron disease could cause pain and/or headaches either (not being sarcastic was just unaware of this if this is the case)

[youvegottobekidding]

There are 5 subtypes and they have varied and overlapping symptoms.If you want to know more about them, you could start with the Wikipedia articles on each one, there are links here
http: //en .wikipedia. org/wiki /Motor_neuron_disease
(remove gaps from link, obviously)

Amyotrophic lateral sclerosis has a lot of overlap with these symptopms, excluding the conjunctivitis, hair loss and smelly urine.

Are you worried you might have motor neuron disease? You cold contact the association
http: //www .mndassociation. org/

[ice889]

what motor neuron disease causes even half these symptoms besides the muscle wasting?

[nutrinut_bob]

I was reviewing my paperwork from the hospital stay I had last year and noticed they said I previously had a tonsillectomy.  No, I never did!  Whatever I have, which hasn't been positively identified, removed them for me.  After all I've learned on this journey, I strongly suspect toxoplasma gondi, and more than one strain.  I'm getting a very positive response from what one Dr. referred to thusly:

Toxoplasma gondii are particularly susceptible to oxidative damage, so juglone may be a specific herbal treatment for this parasite.

Juglone is a chemical found in black walnut hulls.  It's slow going, because the microvermin have a way to detoxify Reactive Oxygen Species, but it's working.