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

[Stargazer_Lilies]

ALS is one of motor neurone diseases, and it sounds it has been ruled out.  

[youvegottobekidding]

What you have described is not lyme disease. It doesn't cause atrophy at all, or quite a few of the other symptoms you've described.

I think you could possibly have syphilis. I would ask to be tested for that just in case. (People think you can only catch that sexually but that's not correct).

Also, a lot of your symptoms could be motor neurone disease. There are 3 types of this and one causes the wasting you described and the tearing up, and actually a lot of the other symptoms. I would read up about that too.

I hope you get a diagnosis soon, I know what it's like living with the stress of not knowing what you have. It sounds as if you are putting up with something very nasty indeed and I wish you the best of luck in finding treatment.