A few questions

[angielyn]

I'll try and keep this short 

I have had "issues" for years. The past two years and been by far the worse!!! I've been to a few Dr's and specialists with no real answers. Surprise, surprise! The rheumy I did go see earlier this year suspected Sjogren's but of course my blood work was normal so he basically said he had no idea what was wrong then dealing with my then idiot Dr. I decided to take a break from finding out what was going on. After two months my hubby had sorta told me it was time to get hunting again lol So... found a new PCP who by the way I LOVE!!!! She listens and is willing to try anything as long as my ins. will cover it. She has eliminated everything and anything from HIV to thyroid to pernicious anemia. You name it, she's tested me for it. I have even had a brain MRI to rule anything out in that area since I was having terrible cognitive issues. About 2 months ago she noticed I had swollen glands on both sides and asked how long they have been that way. I said 2yrs (lol) she's like hmmm and sent me to an ENT Dr. they said my left gland wasn't producing saliva like it should and he could not feel stones or anything like that and I have no pain at all other then a sore throat. Then while checking my nose, mouth and all that they asked if I had a hard time breathing and some other questions. SOOO back to the Sjogren's blood work. I went to my PCP on Friday and she wants me to see a Rheumy again for the possible Sjogren's. I told her my blood work has been neg. which I guess she is going to talk to the Rheumy about looking farther into it then just blood work. She also feels I have Celiac which my blood work is also neg. for lol So now I have to have a biopsy FUN FUN! I can't wait for this But, my sister and aunt both have it with neg. blood work. My Dr. feels that is what has caused my B12 level to go so low which I'm now getting shots for. Also my VitD level has been very low (6 when I started but it's now up to 39) One thing I did read is how Sjogren's can cause Tarsal Tunnel Syndrome. I found this very interesting since I have been diagnosed with TTS for the past 15yrs and have been on disability for it the past 4yrs.

Anyhow, my question is mainly this. To get the biopsy for the lip what type of Dr. does that??? And other then blood work and the biopsy what other tests can be done? The minute my blood work was neg. (ANA etc.) my Rheumy dismissed it when I know you can have it with neg. blood work.

I also told my PCP on Friday that I notice I'm LOTS worse in the summer. I can not handle the humidity we have. I have to hibernate in the AC. I'm not as dry in the summer but it's like the humidity just kicks me to the ground so bad. The winter months I am dry but seem to feel better. I also notice now that it's cooler I'm getting pain in my fingers which I don't feel in the summer. I just have some crazy symptoms if you ask me lol

[Scottietottie]

Hi Angielyn 

Don't you sometimes long for the days when doctors diagnosed on symptoms - because they didn't have blood tests! Sounds like you PCP is a keeper anyway!

When I had a lip biopsy I had it at a local dental hospital. They did a good job. It wasn't very painful and it healed beautifully. It was, however, negative. I had a dx of SjS without the blood being positive. (It was mildly positive for lupus but I had SjS symptoms) I've basically now had my 'label' removed but they are still treating me. I'm still on Plaquenil.

I had a negative celiac test too. A neuro suspected it because it would explain quite a few symptoms. As the test came back negative though they are not doing any further testing but I think I may experiment with going gluten free anyway.

Good luck in your search for answers.
Take care - scottie 

[angielyn]

Well, if my pcp just went by symptoms she'd most likely just diagnose me with Celiac and let the rest go which wouldn't make me very happy either since I don't think that is causing all my issues if I do have it. My sister and aunt are both neg. but neither of them have had the biopsy. They are both gluten free and so much better. But, neither of them had neurological issues like I did and the low B12 issue like myself which is why my Dr. really wants the biopsy. She's trying to figure out why my B12 is so low and why I can't absorb it Yes, she is a great Dr. I know my last appt. they were talking about one of the Dr's left and she may be at another office.... I said whatever, I'll go where she goes LOL Right now she's two blocks from my house and the other office is about 15 miles.

Hmmm, I doubt my dentist does the biopsy. He don't even pull teeth lol

I wasn't sure if an ENT, Dentist or what type of Dr. would do the lip biopsy

Hopefully I'll have answers soon!!!

[Scottietottie]

Hi 

ENT might - or an oral surgeon.

My neurologist sent me for a celiac test because of neurological issues. It can apparently cause peripheral neuropathy and balance issues. I tested negative so am still looking for answers.
Pernicious anaemia can cause low B12 but your PCP must know that.

Take care - Scottie 

[soycoffee]

I'll try and keep this short 

[ . . . deletions]
SOOO back to the Sjogren's blood work. I went to my PCP on Friday and she wants me to see a Rheumy again for the possible Sjogren's. I told her my blood work has been neg. which I guess she is going to talk to the Rheumy about looking farther into it then just blood work. She also feels I have Celiac which my blood work is also neg. for lol So now I have to have a biopsy FUN FUN! I can't wait for this [ . . . ]
Anyhow, my question is mainly this. To get the biopsy for the lip what type of Dr. does that??? And other then blood work and the biopsy what other tests can be done? The minute my blood work was neg. (ANA etc.) my Rheumy dismissed it when I know you can have it with neg. blood work.

I had my lip biopsy done by an advanced student in Oral Surgery at the UPenn Dental School, in conjunction with a lot of other tests for Sjögren's, as part of a Research StudA ly of Sjögren's Syndrome diagnostic procedures. I think what they hope is to isolate genetic markers for Sjögren's.

From what I had been reading here, there was much to dread about the lip biopsy. From what I experienced when I had it, it was so minimal.

No interference with eating; three days, maybe, of slightly bothersome "strings" -- actually, stitches -- in my mouth. Almost no pain, the second and third days after. A little more discomfort on the fourth and fifth days, but those were Saturday and Sunday. It didn't really rise to the level of contacting either the Research Coordinator or the Oral Surgeon: I took two Tylenol instead of one, and was fine.

I also told my PCP on Friday that I notice I'm LOTS worse in the summer. I can not handle the humidity we have. I have to hibernate in the AC. I'm not as dry in the summer but it's like the humidity just kicks me to the ground so bad. The winter months I am dry but seem to feel better. I also notice now that it's cooler I'm getting pain in my fingers which I don't feel in the summer. I just have some crazy symptoms if you ask me lol.

I would interpret pain in the fingers as neuropathy, if it were my symptom. On the other hand, pain in a knuckle, rather than over the bone, might be arthritis. Tell the doctor, don't keep it to yourself, please.

Thanks for the airconditioning comments! I keep getting asked whether A/C bothers me, and I have to say, "Absolutely NOT." Even in midwinter, my apartment is so hot I have the two air conditioners on most of the time (fans, minimal cooling), because feeling hot is so uncomfortable. Every once in a while I'll be in a room that is uncomfortable because of the A/C -- usually in a hospital or doctor's office :-(  But I've been given the impression that I'm not supposed to bless and welcome A/C. I huddle around my A/C in the summer like others cling to a heater or fireplace in the winter, as a lifeline. Welcome to the minority!  Oh, and I have positive ANA, and positive SS-A, and ONE DROP of saliva produced in a supervised 5 minute test.

Oh, but then, I was dropped from a dry-eye study because my eyes were not dry enough. They were dry enough that I had been treating them daily, for meibomianitis, corneal opacity, and corneal dry spots. With some Prednisone, I am producing a little bit of sweat in my underarms, and every few days there are a few tears in my left eye, and sometimes my right eye gets into the act as well.

But officially, I had scintigraphy (a radiological study) of my salivary glands, with normal results. And there are other things that don't clearly support a dx of Sjögren's.

Ooohf! So there it is. What's the poor rheumatologist to do? In this field, apparently, it's fairly important not to give the wrong treatment for the wrong disease, which leaves some things waiting for a clearer clinical picture, before treatment can begin, lest there be harm.

I'm glad you have a PCP who is aggressively pursuing your interests, an ally. She sounds wonderful. I have a couple of specialists who have known me for ten years,  who preserve my sanity against the new doctors who think I'm malingering, or a neurotic who "enjoys poor health." The trick seems to be to lower expectations, pretend you don't want a working relationship with the rheumatologist until she or he is clear on diagnosis and begins to invite one, at which point I and others are likely to have already moved on, because the pace is so slow.

I just got on my hobby horse, didn't I.

Sjögren's world is interesting, complex, and difficult to conceptualize.

Welcome and all the best,
Soycoffee

[angielyn]

She, my pcp did suspect Pernicious anaemia but all blood work was neg. for it. What a surprise lol Since I've been getting the B12 shots I'm almost like a new person. She first thought I had MS that's how bad my neuro. symptoms were. I couldn't even walk a straight line, vertigo was terrible bad for days, constant tremors and muscle spasms. I still do get pins and needles but the worse of all that is gone and my brains have come back My pcp says the biopsy for celiac is the only true way to know for sure if you have it or not. She's been after me for a few months to get this darn thing gone lol I kept coming up with reasons why not to get it done and to try this or that which she was fine with, I told her last time if this test was neg. or that was neg. that I'd then do it. WELL, it was neg. so I gotta hold up my end of the deal. She then said if the biopsy is neg. and the Rheumy doesn't help much she's going to diagnosis me with fibromyalgia to at least try some medications which my ins. won't approve without the fibro. diagnosis. She said at least until whatever autoimmune I have shows it's face

No, it's knuckle pain that I feel in my fingers :/ But of course my RA tests are all neg. my hands last winter would get super hot.  Drove me batty! I hope they don't do that nonsense this winter! The AC does bother me if it's blowing in my face!!!! Dries my eyes out terrible, same as a fan does. We don't even have heat on in our bedroom so I can sleep normal. It's so cold in our room lol We have a heater on our bed that has a timer on it. It's so darn cold up there that I NEED the heat when I first get in bed lol But, only for a little while until I adjust. Then it goes off and it's just perfect. Some nights I also keep the fan on. I think right now it's about 60 in my bedroom lol Odd thing is I can not sweat, if I'm cleaning I just feel like I'm over heating but at night when sleeping ugh some nights I sweat TERRIBLE!

I think this week I'll get the blood work done. I know it's going to be neg. but it needs to be done I guess to move on.  That is what the ENT wants done. Not sure what else they can do or whatever. Hmmm Thing is I'm not over dry. My eyes usually aren't bad, they do get the gritty feels like sand in my eyes from time to time and I can not wear eyeliner gah forget that! My throat is very dry which causes a constant cough, mouth is fairly dry. I know it could be worse so I deal with it. My lips are pretty dry and I live with chapstick attached to my butt lol If not the corners of my mouth start to crack and split then I get mad cause that stuff hurts!!!! And my elbows get terrible dry in the winter. They get so dry they hurt. Sore throats and swollen glands constantly.

I just dread going back to the Rheumy. He's about 2hrs away and I do not like to drive lol Let alone that far.... And he is the only darn Rheumy that takes my ins. Hopefully because I did see him earlier this year I won't have to wait another 6 months for an appt. like I did last time.

My PCP did give me script for my Rheumy that says DX Sjogrens possible Celiac/Fibromyalgia. SOOOO see what he says about that lol And with the ENT suspecting Sjogrens we'll see. And this darn Rheumy was the first to suspect Sjogrens so see what he does when I go back. I have to call the GI and Rheumy tomorrow to get appts.

[soycoffee]

Hi, Angielyn,

You said "No, it's knuckle pain that I feel in my fingers :/ But of course my RA tests are all neg. my hands last winter would get super hot.  Drove me batty! I hope they don't do that nonsense this winter! The AC does bother me if it's blowing in my face!!!! Dries my eyes out terrible, same as a fan does. We don't even have heat on in our bedroom so I can sleep normal. It's so cold in our room lol We have a heater on our bed that has a timer on it. It's so darn cold up there that I NEED the heat when I first get in bed lol But, only for a little while until I adjust. Then it goes off and it's just perfect. Some nights I also keep the fan on. I think right now it's about 60 in my bedroom lol Odd thing is I can not sweat, if I'm cleaning I just feel like I'm over heating but at night when sleeping ugh some nights I sweat TERRIBLE!"

YUP. I really want it to be COOL when I sleep, but I can't stand an air conditioner blowing into my face. "Odd thing is I can not sweat," you say. I have not been able to sweat for years. In fact, when I started taking 5 mg of Prednisone daily, I felt this sticky wetness in my armpits, and was scared by this new symptom! You guessed it! Prednisone started the sweat glands producing. Nothing in the textbooks about us SjSers not sweating. That may be why we don't tolerate the heat very well.

Best,
Soycoffee

[angielyn]

I have been saying it for years that is why I can't handle the heat. Because I don't sweat, at least not like I should anyhow. I literally feel as if I'm over heating. We use to live in Rehoboth Beach, DE and I didn't have as many issues living there as I do up here in PA. I think because down there I had the Ocean air that kept me cooler then up here in PA, Here we have nothing but stuffy hot icky air.

I joke around with my hubby and tell him soon we're moving to Alaska!!! But ugh I couldn't stand that cold either eeks