today I made all the phone calls they told me to make
I caled GI, he said things have certainely gotten worse,, hes leaning towad AI pancreatitis,, wants to check my Igg4 levels
called Neuro,,, not much from them other appt in Oct,
ent,, I guess he wants to do surgery on gland on monday,, I am not so sure about all this,,
called rheumy,, i dontknow whathe is going to do,,
got new GP,, old one wasent getting it
just so tired of strting over again,, expecially when i neverhave gotten a solid dx of SS,,
so its another night of salivary gland pus,, wake up to a mouth and sinus full of goo,, this morning I almost passed out at the sink from coughing so hard trying to clean out mythroat of the goo
I am glad that you are back. Keep us informed about your new doctor visits.
I don't know how you do it but keep it up. We are all cheering for you!!!!
We're glad to hear from you again. Still amazed the hospital didn't keep you.
Also, hard to understand that they didn't work out some kind of help with a home help aid. Did the caseworker mention that at all? It seems that some in your family aren't exactly the helpful sort.
We're all still here for ya, and wish you strength. You already have so much courage.
Melinda
Glad you were able to line up some appts. Are you having a gland incised and drained by the ENT or is he going to remove it???
I had the submandiublar gland removed about 1 1/2 years ago. Not such a bad surgery. I swelled up unbelievably though. I think the excessive swelling was becauseof the autoimmune disease and the inflammation, etc.Also ended up with more scar tissue than normal from the drain but who cares. I'm not looking for a husband.
It might be a good thing to get rid of that infection. When you always have infection in the glands it can keep the infection brewing all the time in other areas. I know the coughing til you almost pass out drill from the mucus. It is the pits but it needs to be done to get rid of all that junk.
Hope your new rheumy works out. Doesn't really matter whether you get a SS diagnosis I would think. They need to treat the problems that you have no matter what the cause. Good luck and hope the GI can sort out the AI pancreas stuff.
And yes, it does get old trying to line up new docs. I'm still searching for a doc who can help me with all my weird mucus stuff. All my other docs are burnt out. Hopefully someone will start you on some IVIG or something! Good luck. Irish ;D
P.S. I would not be surprised if some of your issues are caused by infection in the lingual tonsil area. This is the area behind and to the side of the tongue. This area seems to drain out rotten stuff especially when our immune systems are affected. Ask your ENT about it It is very hard to treat this tonsillar area and very hard to remove all the tissue. Almost impossible. They don't like to get too aggressive with surgery in this area because of possible complications.
I had some of my lingual tonsil removed by laser in April of this year. For about 2 weeks things were better and now I am having just as much, if not more, problems as I did before if not more. My ENT told me to brush my lingual tonsil so I try. Had to buy a baby toothbrush that is very small and very soft. It does help me by loosening up the junk in that area, but it is still very hard to cough up. Always feels like I choking on something but don't know what it is. Oh well, have to complain about something. Take care now. Irish
Thank you Irish,
I can only add that I may not be in dire straits to go to the ER,, but breathing eating and being able to go to the bathroom are pretty important, the mornings are the worst, my mouth is white, one of both partoid glands are swollen and draining that pus, andit continues all day, I have mentioned that John Hopkins reread my lip biopsy and they added Chronic Sclerosing Silidinitis,
With that said and along with the other problems that are evident,, (raised amylase and lipase,, not extremely high as one would get from accute pancreatatis, but a ongoing inflamation of the pancreas, I was able to email the gastro and told him to look over my recent test which showed elevated eosoniphils, raised pancreas levels and the salivary gland issue, he actually emailed me back and said my Igg levels were normal 3 years ago,, but he said that doesnt mean things havent changed, I
Monday, I think that is the day they want to do the surgery onmy salivary glands, as for tonsils,, they were taken out years ago,
Igg4 disease is slow to develop in most cases, and once it becomes symtomatic it really cranks up,, attacking many organs, and blood vessels, (neuropathy), aorta, vena cava, may explain why the side of my neck isnt getting enough blood,
I didnt want to get upset with the ER Doctor, but when you hear things like we cant do anything when its apparent that they can see me in distress, it just sent meover the edge, I just asked him, how do you propose I eat,, how do you propose on how I can swallow,
Of course I know ER;s are for serious problems,, but when you feel like this day may be your last,, you get scared and just go,, my wife said there going to end up [utting you in a psych ward,, I just told her,, if they do and I cork off,, then you can sue,, its scary when you can swallow, when the secretations are so thick, and its constant, that breathing becomes a pretty good idea on trying to remendy,I put a call into the ENT,, I told the nurse that I am tired of this constant nonsense,, Iknow my options are limited in this area,, but your right, if I got just one thing under control,, it would be just one more thing I cna cross off my long list,, it has never gotten shorter, Igg4 disease is different from teh diagnosis of SS,, a biopsy of teh glands will show the raised levels of infiltrates and the destruction of the glands, this along with autoimmune pancreatatis,, raised serum levels should give a good indication of the presence of the disease, unless steroid treatment isnt started it will just continue to kill you slowly, I told my wife this mornng,, they wont find out what killed me untill they do the autopsy, sad thing to say,, but its that bad, I have lost a few more pounds,, I am down to 130lb, was up to 155 just a few short years ago, yet all this seems to make no difference to these people, I look like a Buchenwald prisoner, eyes bloodshot,, sunk in my face, no color at all,, thats another thing of IGG4 disease, the eyes become dry,, oral services become dry,, the attack on the GI track can be severe, as it can attack the nervous system, usually in the thoracic spine,, but can be anywhere, I think if its what I have,, its attacking my spine on all levels, the painis most severe when I stand up,, the tingling and numbing become more unbearable, the only thing I donthave is a fever, yet that doesnt mean you cant have somethng seriously wrong with you,,
s why I am hanging in so long,, try to igonore the pain,, ignore the glands, ignore the choking,, teh spine pain the abdominal pain which I described to teh GI doc as sounding like a mop is being squeezed, and the contractions of the guts, it hasent been normal for a few years now,,,,,,,,,,,, the GI nurse just called,, the doctor is ordering a bunch of labs,, I guess I just need to go to Quest ad get it done,, she said if anything was out of the ordinary,, they wold call,, so my persistance paid off, I have seen this doctor before,, hes German,, but never once did he not reply to any questions I had for him,,
So now I need to call quest and see if they have the orders in teh system, she told me any quest should have them,, just seems like I need to go to a special one,, but its been a while since i have ben to one,, so things may have changed,,
Thank you all for your concerns, I am still fighting the good fight,, but I must admit that death looks a lot better on some days, I told my wife they shoot dogs that arent this sick, but for the concern of a few decent people who live near me,, I truely belive that its a given fact that life is considered cheap here,,
OMG, Really? I can't imagine what he77 you must be going through on a day-to-day basis.
But please know that you're so valuable to us here on the Forum! I learn so much from you -- about persistence, about compassion, about stick-to-it-iveness. You are a miracle, my friend, and I thank you for your posts and your strength.
Good luck Really? and I hope that this bunch of doctors can finally put it all together for you.
Take care my friend and I'll keep the digits crossed for you as well -
Patze
really, Just outof curiosity when did you find out about the IgG4 disease??? You just started talking about it lately. I do remember you having some issues a couple of years ago but that was sort of left at the wayside for a while. Irish ;D
I'm too am curious about the IgG 4 thing. If your levels were fine before, don't worry just yet.
I have a history of autoimmune pancreatitis and my GI at Hopkins also checked the IgG 4 levels. He said there is 'sometimes' a connection to AI pancreatitis (he didn't go into detail though), BUT not always and that enzyme levels are still the main diagnostic tool. So you could still have AI pancreatitis even if your IgG 4 is okay...as far as I know.
Selective IgG deficiency can cause problems (I have history of IgG 3 def), but I've never heard of it causing such a widespread mayhem. Let us know what this GI says. Sounds like he knows his stuff and hopefully can help you.