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Discussion Starter #1
Hey guys! It's been a long time since I posted. I had 2 major work-ups for Lupus, and both Rheumy's said "not likely." Well, I'm having MORE symptoms of Lupus now, inclusing arthritis (I'm 30 years old and underweight, I have no reason to have aching joints)...frequent illnesses, and painless nose/throat ulcers. My ANA was recently checked, and it is down to 1:80. (It used to be 1:320.) Do you think it would be worthwhile to have ANOTHER check for Lupus, or just accept that it's something else and move on? They are taking out my tonsils in a few weeks, hoping that will take care of the constant throat infections!
 

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Discussion Starter #2
PS: I am noticing that most of you report PAINFUL mouth ulcers, not painless. Well I ALWAYS get a mouth full of painful canker sores right before/during a "flare up" of whatever I have. Does that count?

I don't really think it's Lupus since my bloodwork has been fine TWICE. I'd feel silly going back to the doctor and asking them to check again. But we just can't fgure this out! Right now they are calling it Chronic Fatigue and Immune Deficiency Syndrome, but I really think there's more to it than that.

I am seeing an Infectious Disease specialist on the 12th. Hopefully we get some answers shortly thereafter.
 

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Actually, from what I've read and know, lupus mouth ulcers are relatively painless more often than they are painful.

I'm glad that they are still pursuing options for you and trying to get the problem figured out.

Having tonsils out as an adult is not easy but I had it done just before I turned 18 and it was DEFINITELY worth it. No more throat infections every 3-4 weeks and constantly enlarged tonsils interfering with basic acts of living such as eating and breathing!

If the tonsils, and immunologist do not help you, and you continue to show signs and symptoms of lupus, then I would definitely go back to rheumy as we all know here the path to diagnosis can be a long one. It can take a while for things to show up in your bloods as well. It's not uncommon for the ANA titre to go up/down either. usually, a 1:320 titre is taken as significant in terms of most likely indicating an autoimmne dissease of some sort...

Good luck, and remember to have lots of soft foods, nutrition shakes, and ICE CREAM at home following your tonsillectomy! :)
 

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Discussion Starter #5
Hello again, it's been a while.

Little update: I had my tonsils removed in April 2007, and less than 8 weeks later, the left side (which was the only problematic tonsil) grew right back. That surgery resulted in the most horrific recovery and traumatizing pain and agony, that I haven't gone back to have the regrowth removed. (It needs to come out, because it proliferated into a mass in the back of my throat that chokes me.) SO, I'm still having problems with recurrent throat infections. (All that for NOTHING.)

Right now I've got several canker sores in my mouth, which are very painful. My throat is raw and red. My ears hurt. I feel like I have a fever, even my breath feels like fire, yet my thermometer is reading normal temperatures. I feel generalized malaise and fatigue. My hair is still falling out at an alarming rate. My arthritis has been flaring up lately (wondering if it's because it's been pouring rain here!)... but still... no diagnosis of Lupus. These episodes are still occurring about once every 2 mos.

This episode started the usual way... I worked too many nights in a row. I haven't worked 4 in a row in years. (12 hour shifts.) Plus I wasn't sleeping well in between. I'd get about 6 hours of restless sleep each day in between shifts. That makes me feel run down, next thing you know.. I'm SICK. It never fails.

I just wish someone would name this stupid illness so I could TAKE something for it. :( Very frustrated.
 

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That's terrible you are having so much trouble. I would be tempted to try new doctors and see if they can figure it out. I sure hope you get some relief soon!

Take care.
 

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Hi there,

What a pain going through all that for nothing :mad: :sad: :hugbetter:

What was your internal med docs take on your health problems, did he give you any insight into what it might be?

In light of your ongoing problems I would go back and see one of the Rheumies again, they need to know you are still having these problems!
Good luck and let us know how you are. :luck:

love
Lily
 

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I'm so sorry to hear the tonsillectomy did not go over well. It is a pretty painful surgery for adults especially - I know!

Interestingly, 2 years ago now... some of my tonsil material grew back as well. And this was about....18 years after they were removed. But it does not interfere at all or cause problems for me other than whatever bacteria/virus caused that material to grow in again. The ENT doctor that saw me said that the little bit of tonsil tissue that was left grew back in when I got infected with something that made the tissue respond to the infection.

I hope they get something figured out for you. It is such a frustrating place to be... in pain with no reason for it given and/or no help available.
 

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Discussion Starter #9
Thanks for the replies, ladies. I've seen a few different specialists. ENT, Infectious Disease, Internal Med, Endocrinologist... and none of them have figured it out. My Endo says it could all be related to my hypothyroidism and polycystic ovaries, but that doesn't explain the febrile illnesses every 2 months. I had one Rheumy say I have Fibromyalgia, which is crap because I don't even have any muscle pain. I don't have any of their "hallmark" symptoms. I'm beginning to think this isn't an autoimmune disorder, but rather a immune deficiency disorder. I just can't seem to stay well! :(
 

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Hi there.

I think that you need to still follow up with someone. You can't just ignore what is going on since it is disrupting your life.

What happened with the immunologist. Having that disease can cause many symptoms as you are having and there should be some treatment.

Also what happened with the infectious specialist?

I went through many doctors before being diagnosed. They had their opinions of this and that. Fact of the matter is, if the symptoms are still there you need to be seen.

It seems that you are overdoing what you can do - working full straight shifts like that, etc. and is making things worse.

Try to cut your shifts down giving you space inbetween to sleep and rest. Prioritize everything else. What can wait, let it wait.

Also start to make a diary of things that happen each day. Take your temp frequently to see if you do have a fever.

I have heard of the tonsils growing back. It is an aweful procedure to have done as an adult. As a child, they get through it. But it does sound that you need to get that removed so I would do it and get it over with.

I hope that you continue pursuing what is going on whether it be Lupus or not.

Hope you feel better really soon.

 

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Hi,

Is there any possibility you could go to a teaching hospital or somewhere like the Mayo Clinic? Someplace where they are used to looking at the trickier cases?

I think about doing that myself sometimes. While the first rheumatologist was very clear cut and said "You have lupus" and there was no doubt in his mind, my second rheumatologist seems less sure and has actually diagnosed me with two things, like he isn't sure. It seems kind of luck of the draw for who you get and what they end up diagnosing you with. (Shouldn't be that way!) I am sure treatment is what you are after and so if you can, I would recommend seeking out some opinions from some experts who are used to less clear cut cases.

Good luck and take care!
 

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:eek: Hi Bunny, You have spoken about a few of your symptoms, but when you spoke about the dr., you spoke of the blood tests. Lupus is a very complicated disease to diagnose, and we all want a "label"
to put on it. First, there is no one blood test that can say "yes" you do have lupus, or "no" you don't have lupus. Most of us just put too much importance on blood tests. The bloods are a guideline for the dr, and remember, he is the dr. and he knows what results he wants, not us. Lupus is diagnosed by several things, yes, bloods, and symptoms, where and when they ar and how it feels, etc. the dr. during your visit, is always looking at you, the coloring of you, the skin, eyes, hands, fingernails, your throat for a couple of things,
and more. I know that there are lupies on this site, that have been
treated as a lupus patient, are on the proper meds, and being monitoredas a lupie for years, and still don't have all "the right bloods", and don't have the label of "Lupus." I would suggest that
you stick with your Rheumy, and Please, if you have not given him your family and personal history write it up and give it to him, and also, begin your journal and keep it up to date. And I Alway's make
a copy of any of these paperwork's , and at the end of the appointment, I hand it to him, and say; " this is for you to put in my file, and they always do. It is the only way that he can review and study your case. Make a list of your questions, and put the top 3
that are the most important, at the top, cuz that may be all that you get time for, then take that list home and keep going over it till your next appt. At your next appt, I would ask if you and he could discuss meds , as this is beginning to control parts of your life, so
bring pen and paper, and ask for generic's. Right now, this is the most important thing to you. You Have to cut down on your work schedule,--a lupus rule; stress=pain, and pain is what you have.
If you have any more questions, just P.M. me, it would be my pleasure to try to help, or just keep posting on this site. Remember
that knowledge is power, and you have to get yourself to be very
powerfull, so begin to read the facts and info that are at the very front of this site b/4 the message boards even begin. I do so hope that you start to slow down and concentrate on getting things written down, and be well, or at least better.(((hugs))))):jab:
 

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Hi again,

I dont know if you have Immunologists as specialist doctors over there, but thats who I ended up going to, one at a top university teaching hospital. Thats the only way they could sort me out. So thats a very good option I think considering your complex case. And.............if it is an immune deficiency or something like that they will explore all avenues, they are trained in the entire immune system and the higher up and more experienced they are the more likely they are to put it all together.

:luck:

love
Lily
 

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Discussion Starter #14
Thanks, everyone. I had not seen an Immunologist yet, as my family doctor said you can only get referrals for that once you have a diagnosis. As if they do not diagnose, they only treat. I think I will go anyway, and just see what they come up with.

Someone else asked what Infectious Disease found -- nothing. He took my health history, (and has seen me as an inpatient before) and found nothing that would lead him to believe I had any communicable disease. They've ruled out anything that's transmittable, so he really didn't have much to say.

One Rheumy was extremely rude, and just told me to go to physical therapy for my BONE PAIN. As if that would help. He didn't even want to order hip Xrays because it was "too much radiation for a woman my age." Which is crap. You could have a hip Xray every day of your life and you wouldn't have any problems.

Another Rheumy just thought it was hypothyroidism (which I take Synthroid for)... and referred me to Infectious Disease or Oncology to rule out other causes. I already saw the ID (mentioned above) and Oncology was pointless because my blood cell count is normal.

I do have many symptoms of autoimmune hepatitis, and many people in my family have liver problems. (Including my dad, 2 of his siblings, and his father.) It would explain why I went into liver failure when I had pneumonia. And it can be acquired by having Mono, which is when all these problems began. I'm going to ask about that next. I'm running out of things that could be causing this!

Ugh, my mouth hurts SO BAD with all these canker sores! And TONS of my hair fell out today. I hope they figure this out soon. :worried:
 

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Discussion Starter #15
Edith;473174 said:
Hi,

Is there any possibility you could go to a teaching hospital or somewhere like the Mayo Clinic? Someplace where they are used to looking at the trickier cases?

I think about doing that myself sometimes. While the first rheumatologist was very clear cut and said "You have lupus" and there was no doubt in his mind, my second rheumatologist seems less sure and has actually diagnosed me with two things, like he isn't sure. It seems kind of luck of the draw for who you get and what they end up diagnosing you with. (Shouldn't be that way!) I am sure treatment is what you are after and so if you can, I would recommend seeking out some opinions from some experts who are used to less clear cut cases.

Good luck and take care!
I work for a teaching hospital, and have been an inpatient there a few times. They literally said, "We don't know what's wrong with you. Frankly you have us stumped. But you seem to be getting better, so we're sending you home." And I've had most of my work up at the Cleveland Clinic. They're really good, but just haven't found anything "on paper." No one will look at a clinical picture (how the patient is feeling) and diagnose on symptoms alone. They want "proof" and that, I don't have. :(
 

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Your GP's comment is very strange considering Immunologists are classed as the detectives of the medical world, if anyone can sort out a complicated case they usually can!

Good luck and yes I would pursue that avenue for sure, I love my doc and I'm only here because of his expertise.

I wonder has anyone tested your Vitamin D & parathyroid levels? Thats a well known culprit for bone pain and if you are hypothyroid there could be a connection there too. Either way its very important to correct immune functioning and not something a lot of docs check. Could be one small part of unravelling the mystery and its certainly implicated in a lot of autoimmune conditions.

love
Lily
 

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Also your immunuglobulin levels (IgA, IgM, IgG). If they are low (some or all of them) then that could explain the increased infections/recurring infections. I have low IgA and others here have CVID. I would imagine they have checked this over though if you've got Cleveland Clinic stumped...
 

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Man...that's a bummer that all these places can't figure it out for you. Sometimes I wonder if my hometown places are handling things ok and then I hear that the big places can't figure it out either. Guess I shouldn't be too hard on my local dudes!

Well...wishing you all the best. I hope something transpires that will get you some relief. Keep after them!

Take care!
 

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Discussion Starter #19
Well I saw my doctor's Nurse Practitioner on Tuesday. I was ill at that time, but she didn't really order anything. I just asked for an Immunologist referral, and I got one. Once I mentioned that I keep getting recurring yeast/thrush infections, she agreed that I "definitely have something going on." So hopefully I'll get somewhere with this next doctor.

I'm pretty sure they have tested my parathyroid levels in the past, and they've done an "immunity panel" to rule out the most common immunodeficiency disorders, but not all of them. There is certainly a wide variety of components that can be missing from your immune system, and only an Immunologist would know which ones to test for. And I really feel this is all linked to the Epstein Barr virus. All my problems seem to have started around the same time I had mono!

So anyway, I'll keep you all posted. Immunodeficiency is a wee bit scarier to me than Lupus because I work in a hospital with mega germs almost every day. Right now my illness has progressed to a harsh, moist cough with shortness of breath. I'm going back to the doctor tomorrow. I hope I'm not getting pneumonia again! I've had so many sick patients coughing in my face lately... I feel like I am bound to get ill no matter what I do! I wash my hands after touching every patient, but as soon as I touch the door knob to walk out, I'm exposed to more germs. For an immunocompromised person, a hospital is the worst place to be. I'm afraid I will eventually have to choose a different field in nursing, and deal with relatively "healthy" people (non-infectious patients, anyway). I'm jumping ahead I guess... Sorry, l'm feeling a bit anxious about all this! :worried:

PS: My doctor was going to recommend a mouthwash usually given to cancer patients to help ward off canker sores. She couldn't remember the name of it. Does anyone know? They're almost completely healed now, but I'd like to keep them from coming back!
 
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