I had a salivary gland biopsy in 2000 which was read by Mayo, 'chronic saliadenitis consistent with Sjogren's Syndrome'. They did not do a focal score. I failed a rose bengal test and Schirmer's test....HOWEVER around here, they won't diagnose if you have no inflammation and apparently my lip biopsy had no inflammation, no lymphocytes etc....neither has any of my blood work, except once I had an over the top ANA elisa.

I am told that AN will cause these symptoms.

However...

My son has had parotitis twice before in his life and I tried telling that stupid doctor that at the ER. He does swell up awful and pus comes out and it is not pretty and you can get a fistula too. I was so tired of dealing with 24 year old residents I could have torn my hair out.

Anyway, he did also see a dentist and the dentist didn't think it was dental...(actually he saw two dentists who agreed), but the dentist is doing a root canal anyway, as the infection was near this tooth that had a deep filling and he felt best to clean it out since by then pus was oozing out of his gums everywhere (sorry to be graphic) and he looked like a chipmunk and his lip was huge....AND he put him on a new antibiotic, because, I as asked the docs to culture it days ago, they did not....the antibiotic he was on, wasn't working all that well...

However, it is his impression that this did not start in the tooth, but now that everything is contaminated at that tooth has a very deep filling he went ahead and did a root canal.The cheeks back to the ears were swollen and below the jaw and the lip as well. His face was truly twice the size it should have been, for several days!!!

We both have had had these issues....I can't get any one to consider this Sjogren's thing....they just wag their heads...the last rheumie would not even draw blood....the next week the blood from my primary came back with an ANA elisa of 2.37! So who knows what opportunity was lost. ANA's are nonspecific.

If I have something autoimmune, it is also going to be skewed by a case of Lyme, which I think has kicked the snot out of my immune system. I have biopsy diagnosed axonal neuropathy, and biopsy diagnosed myopathy in a fairly proximal site...the last rheumie tried to say the 'f' disease word, and I said, 'You have got to be kidding'. I said 'with all these biopsies indicating clinical disease don't even say that to me'.

I am missing my SC joint, totally blown thru in the accident (I should be dead). I have a frontal sinus fracture. I have two desicated discs T8 and T9 which I am told are inoperable due to my autonomic neuropathy. Supposedly I won't survive, and given I don't react well to anesthesia nor drugs, I am not real excited about being put under because I do not 'go under'....(my son didn't feel 4mg of morphine either)....and yes, thoracic discs DO hurt. I also have a positive PET for an area in my colon....I am not sure how many 'false positives' or rare but normal issues, a single person can have. My husband just laughs, and says these guys have no clue. Anyway, surgery to correct this kind of disc herniation is thru the chest....and a huge endeavor. The last time I had a general I felt like I had a stroke....(which is very CMT-ish) and I had an autonomic crash in post op.

I do not have a positive IgG for Lyme, and here in my state, that is what they test for. I have a clinical diagnosis due to a tick bite (tiny tick, didn't know what it was) and large EM rash and climbing IgG titer which was aborted by antibiotics which is what usually happens. There is no doubt I had the disease and I have the diagnosis....I don't know if this can make you this sick 14 years later??? I was told I was cured.

I have a positive IgM response. I am negative by PCR in spinal fluid....so hard to say...it has been 14 years since I was infected and I was treated, but not IV.....but, I don't have normal immune response, as I never seroconverted to Hep B from 6 shots. They gave up....my son also got very sick when they gave him all those immunizations when he deployed.

And we do have reasons to believe that there is some familial connection to this neuropathy/myopathy....a detailed genealogy is interesting and, I will likely have to take to Wayne State or some other place that specializes in these things to have this looked at, as my respectable institution has reached the end of their internet and resources. My insurance isn't going to pay for a lab not in their system, so genetic testing is going to be on my dime(yes they have a patient limit for what they charge, but I am still trying to pay for my orthotics)......

and the docs seem to be having issues understanding that thoracic discs cause a heck of a lot of pain, not to mention PN, a chest cracked in half etc, etc, etc.....I would at this point consider a morphine pump....I am getting that desparate. Plus I have all the autonomic PN issues and a lot of sensory ones too.

So it is confusing....I don't know what to think. Tomorrow I see the GP, and I will discuss my issue and my son's issue, I am watching over. I want him to have a rheumatoid panel and his immune function checked, and they will fight me but I want him checked for Sjogren's (fat chance they will want to run this on a man) and Crohns. But first I think I will let the poor guy get thru his wedding.....

My mom is also being moved to the Alzheimer's unit this week....from her assisted living apartment. It is just a hard, hard week all in all. Excuse my absence and usual humor...I lost my humor...it must be where ever I put the TV remote. It will show up eventually....