[AnnieB3]

I'm dealing with this w sjogrens now despite being very symptomatic and w low c4, high rf quant but neg for the traditional sjo markers.

If they would only appreciate the fact that it's not like we are sitting around dying to be misdx. We all want a proper dx w the best treatment possible. So if this isn't SJO then is it lupus, etc. and if the other poster doesn't have MG then what?!

Needananswer (do you have a less long name? ), I volunteered my time to the local lupus foundation for ten years. I learned a great deal about that disease, though I'm not an expert.

When you say "the traditional sjo markers," what are you referring to?

Have you had an eye exam to have the Schirmer's test to see how dry your eyes are?

I hate that they call it Sjogren's "syndrome" when it's actually an autoimmune disease. It sort of lessens the degree of severity of it. So many people think it's just a little dry eye. It affects so much more of the body than that!

Have you thought about getting a second opinion from a more experienced rheumatologist (of course, not knowing how experienced yours was!). I have no idea where you live, but if it's in the US, you can probably find another one to consult with. This is nothing to mess with.

If, on the off chance, you have or are getting lupus, you might have kidney involvement. Not to scare you, but I have known patients who die due to kidney disease. Has anyone checked how your kidneys are doing? With a UA and/or a comprehensive metabolic panel?

http://emedicine.medscape.com/articl...view#aw2aab6b3

Some patients with Sjogren's don't get lupus, and don't necessarily have positive antibodies! A good rheumy knows that and will look at the entire clinical picture.

You're not fighting an infection, right? So that couldn't be the reason for a low C4! Sometimes you really need to break things down, in order to "help the doctor." Why do they need so much help?!

Do you have joints that hurt or are swollen? If your rheumatoid factor is high, why hasn't anyone addressed that?

Let me know what else I can do to help you. I got to know a variety of lupus and Sjogren's patients at the forum, and it hardly matters if they have one or the other or both. You need help and treatment. Waiting is dangerous for you! Any autoimmune process needs to be addressed as soon as possible.


Annie


A lupus forum where you can talk to others with the same issues.

http://www.thelupussite.com/forum/fo...14027261082083

And this site was interesting, but not a busy one.

http://www.samvslupus.com/2011/03/lu...c3-and-c4.html

And a more complex article.

http://rheumatology.oxfordjournals.o...t/44/1/89.full

Diagnosis and Treatment.

http://www.aafp.org/afp/2009/0315/p465.html

And while you haven't been diagnosed with lupus, this is a great pdf.

http://www.lsnflorida.org/files/nurs...care_guide.pdf

[limpy]

I finally got in to see a rheumatologist in December after testing positive for SSA/RO antibodies last January. He told me that I probably do have Sjogren's, but referred to it as a nuisance disease. And that the treatment is what I am already getting for Lems. That was a big letdown after waiting nearly a year to see him.

[AnnieB3]

Huh?! A rheumatologist said that?

Yeah, I guess if you're one of the ones with Sjogren's who gets cancer—especially since you already have a risk of small cell lung cancer from LEMS—then that really is a "nuisance."

And the fact that you tested positive for SSA/RO means that you could have or might get lupus. Does this guy have a medical degree?

Limpy, Do you ever get a rash in the sun? Are you ever achy? Any other subtle signs or symptoms? If you do, start writing them down. Heck, you probably already have.

Sometimes the national lupus foundation can refer you to rheumatologists who are experts in this topic. Not all of them are, just like with MG/LEMS/CMS.

http://www.lupus.org/chapters

Now, they only list "their" chapters. There are independent chapters, too!

This is as silly as saying a MG patient with antibodies has a nuisance disease. I hope you won't let that doctor dictate your care or what you deserve!

Annie

And I guess Sjogren's is only a "serious, incurable" disease if you're a celebrity. Venus is a cool woman, so this is not directed at her at all! And since she is African American/black, she is far more prone to having lupus than us caucasians. Playing tennis in the sun every day is not exactly a great risk to take.

http://abcnews.go.com/Health/w_MindB...ry?id=14426884

http://edition.cnn.com/2014/03/20/sp...rens-syndrome/

[limpy]

I wondered about his medical degree when I left that day. Achy is a way of life for me. A lot of it is muscular pain due to Lems. He did look at my fingernails with some sort of eyepiece and drew a bunch of blood.
I try to stay out of the sun because it makes me weak and I don't sweat properly, so it feels like ants are biting me in the places that should be sweating. But then I will sweat buckets at other times, even when it is cold.
I did ask my GI doctor to help me find a new PCP because the one I have, although he is very nice, does not direct my care at all. It is all up to me to figure out who to go to next. I am supposed to get a referral, but haven't gotten it yet.
At least my opthomologist took me serious when I told him I had Sjogren's. He changed my checkup interval to 6 months and prescribed restasis.

[AnnieB3]

Do you have a good endocrinologist? Those changes in the ability to heat or cool the body and extremes of them could be endocrine related. Sweating can be the body's way to cool us down. It's also a sign of an adrenal issue.

Now I'm not helping, but piling more crap on!

I have a sun "allergy." The dermatologist isn't sure if it's just polymorphous light eruption or SCLE. So far, it looks like PMLE. I say so far, because these inflammatory diseases wax and wane and can take time to "present" themselves.

I not only get a rash in the sun but also get achy afterwards. Fluorescent lights do it to me, too. So I stay away from both of those things! And, yes, that's also why I supplement with Vit. D daily (besides a deficiency).

Lyprinol is a natural anti-inflammatory that is showing some success in scientific studies. It's been around a while but is now just getting serious consideration. Talk to your doctor about that, too. It might help with the aches, and might have fewer side effects than the NDAIDs.

NSAIDs are really hard on the kidneys!

I'm sorry you are going through so much!

Annie

[limpy]

I have had two endocrinologists, but can't say I have ever had a good one. I got the first one when I had multinodular goiter and he only wanted to do needle biopsies every six months and wait to see if I got cancer. I also was blatantly hypothyroid, but because the bloodwork didn't show it, he did nothing. Then I went to another one who sent me to a surgeon to have my thyroid out, then he basically forgot about me and did not return my calls when I was trying to get thyroid med refills. When he finally did call me, he suggested I have my thyroid removed???
Needless to say, I have not returned to him. I had to get my meds through my PCP, who really does not comprehend how thyroid levels affect me, but at least he allowed me to switch to Armour thyroid, which helps immensely. I have had another endo appointment three or four times, and each time, I was in the hospital and had to cancel. I guess now that I am in a lull as far as being extremely ill, I should get another appointment. But I'm sure you know how it is to have to contend with all the different illnesses and doctors, etc.
That's why I asked my GI to get me a PCP that was proactive so I can take a break and stop being my own PCP.
I really appreciate all your suggestions and ideas because I really do think I am dealing with more than just Lems and Sjogren's.

[limpy]

The sweating problem is also a feature of Lems. I have so many overlaps that fit so many things it just makes my head spin. If I wrote them all down it would probably make a small novel.

[Needananswer]

Thanks so much, Annie and hi Limpy! Limpy I share in your frustration and hope you get the care you need!!!

Annie,

For the traditional SJO markers I was referring to SSA(RO) and SSB(LA). Are there others? I know my eye dr is brining me in for a new sjo test. She already did it actually, via finger pick, but I guess we didn't get enough blood on the paper so the company called and said we need more.

Indeed I have had Schirmer test and was a 1 and 3 respectively. Prior to that I was a 3 and 4. There was also evidence of eye erosions.

I had a dry cough for many months and they found inflammatory lesions and something else on my lungs. Ill have to go bk and look at exact terminology. I believe they were granulomas oh and a fractured rib that I never felt?! Maybe from coughing so much but wouldn't I feel the pain?

Am I crazy? I mean despite the negative antibodies isn't it sort of a "if It walks like a duck" scenario? My rheum was literally like, "you don't have dry mouth and your not showing antibodies so this is not sjo". Completely dismissive and, worse, provided no solutions. And if it isn't Sjo then what is it?

I am in NYC so often wonder is this a result of a system too taxed? With 8 million ppl vying for resources including good drs maybe I am in the wrong city. But then I read other ppls posts from all over country and realize it is not unique to NY. It's just frustrating!!!

I am seeing a new rheum this wk. Praying and hoping she can help piece this together. The only ab that came bk pos were smooth muscle and one time a very slightly elevated rf quant. Ill look to see if there were more but I don't think so. Oh and the pernicious anemia one but I'm on weekly b12 im.

ps. Ill go by most any name

Thanks for your help

[limpy]

I have the SSA/RO antibodies and have extremely dry mouth more so at night. My mouth actually gets so stuck together it feels like the flesh is ripping when I try to pry it apart so I can get a straw in there. At present, that is what wakes me up the most all through the night. I have had issues with itchy dry painful eyes in the past, but right now they are fairly ok.
Saying that to say this. I think you can have a disease like Sjogren's and other autoimmunes and not have full blown symptoms in all areas.

Thanks for all the good informational links!

[AnnieB3]

Needananswer, Have you seen a neuro-ophthalmologist? They might be able to provide more answers or suggest more specialized eye tests.

Do you have the parietal cell or intrinsic factor antibodies? Did you know that when you have pernicious anemia, that means that you aren't making stomach acid? Do you have any digestive issues?

Have you tried supplementing with methylcobalamin B12? The shots are cyanocobalamin. Talk to your doctor about that, or add it to your protocol.

I have no way of knowing if you have Sjogren's or not, but I do know that the rheumy was dismissive of your concerns and symptoms. Sometimes these diseases don't present in "full blown mode" and can come on slowly. And like any other autoimmune disease, they wax and wane. If she had more experience, she would know that not all Sjogren's patients have the antibodies, or they might show up later in the disease process.

And, no, you're not crazy. But this doctoring roller coaster can make you feel rather crazy!

A lack of acetylcholine can give you a dry mouth, eyes, etc. Just as an overdose of Mestinon can make you tear up, drool, etc!

Did anyone do any further testing after you tested positive for the anti-smooth muscle antibody?! Good grief. Have they checked out your liver or tested you for Hepatitis?

http://emedicine.medscape.com/articl...view#aw2aab6b3

And has anyone told you that you have rheumatoid arthritis?

You definitely need a doctor to pull ALL of this together and help you. Bring up the anti-smooth muscle antibody to your next rheumy and/or your primary doctor. I hope someone will help you soon!

Limpy, I'm sorry you have Sjogren's so badly. LEMS is difficult enough.

Annie