Author Topic: New week, new tests, still no diagnosis  (Read 4055 times)

Squeemom

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New week, new tests, still no diagnosis
« on: May 21, 2012, 08:55:21 AM »
So I went to the ENT this morning.  He did NOT give me a referral to a rheumatologist (despite my pretty much begging him).  >:(  He did, however, run the blood test for the SS-A and SS-B antibodies and he reran my SED rate.  He said that he wants to be sure that we are dealing with Sjogrens before putting me on any more meds.  I've never wished that a blood test would come back positive but I'm wishing it now.  I need someone to take me seriously and until something comes back positive, I feel like nobody will. 

I also experienced another new symptom this weekend.  Not sure if it's related to SS or not.  This question is just for the ladies, anyone ever have a Bartholin's cyst?  Ugh.  Not fun.

Scottietottie

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Re: New week, new tests, still no diagnosis
« Reply #1 on: May 21, 2012, 09:05:22 AM »
Hi Squeemom  :)

Yes - I've heard of a bartholin cyst. It's to do with a moisture gland so I could not say that it is not SjS related but many women get them who do not have Sjogren's - so its one of those 'don't know the answer' questions. I had to have a cyst removed from 'down there' earlier this year. It was not a Bartholin's cyst - but any procedure down there is pretty yukky!

I also understand you want a positive result for some kind of affirmation! I got a dx several years ago now based on bloodwork that was mildly positive for lupus - and symptoms. I've since had the SjS dx 'withdrawn' because of a negative lip biospy. I am, however, still being treated for it and see a rheumy, an opthamologist, a dental surgeon, an ENT doc and a neurologist. So saying - it took a long time to be believed. I wasn't until my thyroid went wrong.

Good luck with your test results and I guess you need to see a gynae now?

Take care - Scottie  :)
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lea78

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Re: New week, new tests, still no diagnosis
« Reply #2 on: May 21, 2012, 09:56:39 AM »
Hi, I have a bartholin cyst my doctor isn't concerned about it so long as it doesn't  grow.

I know how it feels too wanting a positive diagnosis to confirm that you know there is something wrong.

AAACGRL

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Re: New week, new tests, still no diagnosis
« Reply #3 on: May 21, 2012, 10:11:33 AM »
Squeemom- Do you have to have a referral due to insurance? Usually the primary is the only one allowed to do that if it's for insurance (at least here in the south).
If not will the Rheumatologists there not see you unless you have some sort of order from another doctor?  Sorry you are having to deal with the frustration. :/
I hope you get some answers soon! 

Squeemom

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Re: New week, new tests, still no diagnosis
« Reply #4 on: May 21, 2012, 01:40:54 PM »
Yeah, I finally broke down and called the Rheumatologist's office today and they won't see you without a referral.  I told them that nobody will refer me and the lady was all, "Haha.  Sorry." Click. This is frustrating.  Guess I'll wait and see what the ENT has for me tomorrow as far as blood tests go and continue to try to get him to refer me.  This is frustrating.  Those of you that have been dealing with this for years are more patient than me and I feel for you.  Last time they ran my SED rate (Friday 5/11) it was normal but I was on 40mg of Prednisone and had been for a few days so I'm sure any inflammation was at least somewhat under control.  I tapered off and my last dose was 10mg last Thursday.  Don't know if it would be out of my system yet.  I haven't ever had the SS-A and SS-B test so maybe something will come out of that as well.  I hate this.

irish

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Re: New week, new tests, still no diagnosis
« Reply #5 on: May 21, 2012, 03:44:21 PM »
Please take a deep breath and relax. YOu are at a point in your illness where you will be treading water. It is just the nature of the beast. I bet if anyone did a survery on the amount of people who had their sjogrens diagnosed within the first 1 -2 years would be like 10%.

I was under the weather from age 20 until I was diagnosed at age 60 with positive lip biopsy.I had 3 other autoimmune diseases and severely low t-cells. So I felt like all those idiots that gave me the crap about it is all in my head speel were very full of you know what.

 I can't tell you how many doctor appointments I had but it darn need wore me and the car out plus was spendy for me and the insurance company. Totally unbelieveable. This was in 2003 and since then there has been more availability to info about sjogrens. Still slow, but better than it was.

This does not mean that you won't have to fight for diagnosis. You just have to keep on pushing. Do not lose your temper with the docs cause if you get a little "wired" then they will just say it is all in your head. Just keep track of symptoms in a journal form and keep on making the appointments.

It is mostly a chance thing getting diagnosed. Sort of like finding the right doctor at the right time to get positive blood work or else a doctor who knows about Sjogrens and what to look for. Lack of patience will be so hard on you and cause you to feel worse.

If there is anything that I wish people could learn is that worrying and fretting is really a waste of energy. All the anxiety I went through and bad docs I saw was stressful for sure. I wasn't worrying about dying or anything but I knew that something was wrong.

At one point after so much trouble with some docs and clinics my hubby told me that I may just have to die from whatever I had. At that point I shed some tears. I sat around and thought about the situation for a few days and then I got mad and started calling doctors and trying to get diagnosed. I told hubby that I was darned if I was going to die without knowing what my diagnosis was. Keep on keeping on, girl!!! Good luck. Irish

violet

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Re: New week, new tests, still no diagnosis
« Reply #6 on: May 21, 2012, 04:19:57 PM »
First, yes, I know all about Bartholin's gland cysts. When I was younger (around 20) I developed a soft lump in that area and asked my doctor about it. She said it was a Bartholin's gland cyst and it was nothing to worry about and it was extremely rare for them to get infected or rupture so there was no real reason to remove it. Okay. So a couple years later I saw an obgyn for the first time because I was having very irregular periods. It turned out that I have PCOS. While he was examining me he commented on the cyst and said it was very large and really should be removed because if it ruptured then that would be an emergency situation. I think he said this only because it was on the large side - a smaller one would not have been a concern.

I had the surgery done and it turned out that it was not a Bartholin's Gland cyst at all but a benign fatty tumour (a lipoma). It was quite large (about 7-10 cm diameter) and only part of it was pushing against the skin so it was visible there. The rest of it was sort of inside my pelvis. The surgery was very straightforward and quick, but wow was it painful to recover from! This is probably because of the nature of the lipoma surgery. It might have been easier if it had been a Bartholin's cyst, although the incision was the same - they didn't realize until they were actually there that it was not a cyst! There was so much swelling and bruising and it was difficult to walk for about a week+ Not trying to scare you, just sharing information! ;)

About the diagnosis... I've had fairly major symptoms for the last 2 years, a very high positive ANA, I've seen several rheumatologists, a neurologist, a dermatologist, a vascular specialist, an eye doctor, an endocrinologist, and I still don't have a diagnosis other than UCTD. YES, I think you should see a rheumatologist. But unfortunately these diseases are often very hard to diagnose unless they immediately declare themselves in an obvious, dramatic, classic way. I can be very frustrated with all these specialists who shrug and just say "Yeah, something's wrong, but I can't treat you at this point." Doctors often say that with autoimmune diseases they basically treat symptoms rather than the disease itself so it does not matter what the label you put on it is. I know that's usually true, but I find that without a label you get a lot more grief trying to get good treatment and recognition that something serious is going on.

Personally, I am on an anti-reflux medication for my GERD and that's it. I tried something for my neuropathy and it did not work so I am now coming off of it. I also tried a Raynaud's med which did not work. Without a firm diagnosis or evidence of serious organ involvement I will not be put on any immunosuppressants like methotrexate or cellcept, which I understand and agree with, though my rheumatologist also does not think Plaquenil is warranted. Other people on here are on Plaqunil even without that firm diagnosis, or with UCTD as a diagnosis. UCTD *is* a real diagnosis, by the way, but it just feels like I'm in the autoimmune disease waiting room with this dx! Is it SjS or scleroderma, or some sort of overlap?

I know the anxiety and the feeling of not being taken seriously. It's really tough. You just have to try to approach things calmly and rationally, document any changes in your symptoms, and I really would try to find someone to refer you to a rheumatologist since they are the real specialists in this area. You'll probably spend a while in limbo - this is normal. Just try to get as healthy as you can on your own through improving your diet, exercising as much as you are able, and reducing stress. These are things that are within your control and now's the time to get serious about your own health and lifestyle. That's what I'm in the process of doing right now... starting to do yoga, learning to meditate, eating a lot more fruit and veggies, reducing sugar and dairy, and drinking lots of water. Those things really do make a difference in how I feel.

Sorry for rambling. Just thought it might help...

eye2dry

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Re: New week, new tests, still no diagnosis
« Reply #7 on: May 21, 2012, 05:04:18 PM »
My sister is a bike riding enthusiast....the seats are murder for long distance and you wear those tight bike pants. My sister suffers from those Bartholins cysts and she has had to have them removed by office surgery...hers may have been smaller than yours.

hope you have no future cysts.
eye2dry

Squeemom

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Re: New week, new tests, still no diagnosis
« Reply #8 on: May 22, 2012, 06:24:41 AM »
Thanks everyone.  So sorry you all have had to deal with/are dealing with this too.  I'm trying to be patient.  I told my husband last night that I'm just going to wait and I'm not going to freak out.  If I have a new symptom or something that gets worse, I will see a doctor and document what they say.  I have panic disorder and my anxiety has always centered on my health (something that is not helping my cause) and it's been very tough to stay relaxed and not be immediately convinced that I'm dying or that I have cancer or something and nobody is noticing.  It just seems so weird that doctors can see all of these visible, tangible symptoms and not do anything about it.  I have a photosensitive rash on both of my forearms and elbows, I have dry and very red eyes, my lower lip is swollen up and raw, I have sores in my mouth that will not heal, difficulty swallowing, horrible night sweats, my joints hurt everyday and now I've got these cysts growing in my (suddenly arid) nether region. Cysts plural because now I've got a matching one popping up on the other side.  All of this happened within one month! But like I said, deep breath, I'm not going to freak out.  I'm going to be diligent and proactive. 

I already eat pretty healthy.  My BMI is within the normal range.  I have a 2 year old and a 3 year old and I work a full time job so I don't ever stop moving (except for at night when I collapse with exhaustion/pain!).  I've just been taking a lot of ibuprofen, drinking a lot of water and trying to get enough sleep.  I think that's all I can do.

I've been reading everyone else's posts, I don't feel like I have much to offer right now since I'm not knowledgeable about any of this stuff and am only getting started.  I've only posted here twice but it has really helped me to get it out and to hear from people who don't think I'm making it all up or that it's "all in my head."  Thanks again!  I will probably update when I hear from the ENT about my blood test results. 

Scottietottie

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Re: New week, new tests, still no diagnosis
« Reply #9 on: May 22, 2012, 08:55:06 AM »
Hi again  :)

A lot of us find it is helpful to keep a 'symptoms diary' because symptoms can come and go and keeping track of when they start, stop or change can be hard to keep track of with brain fog.

I don't write a diary every day but I use a word table and type up stuff when it occurs. I usually end up with a page a month. I also note down doctor and dental appointments in it. It just helps me keep track and I can print off pages to give to the docs when I see them.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

AAACGRL

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Re: New week, new tests, still no diagnosis
« Reply #10 on: May 22, 2012, 10:02:00 AM »
May I ask why you're seeing the ENT?  I had to see mine when I had salivary gland inflammation. Just curious.

Squeemom

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Re: New week, new tests, still no diagnosis
« Reply #11 on: May 22, 2012, 10:53:43 AM »
The ENT was the first visit I made on this journey.  I made my own appt with him because I was having difficulty swallowing and felt like food was getting stuck in my throat.  I also saw the dentist on the same day a month and a half ago because of some sores in my mouth.  The ENT did a scope on me through my nose and down into my throat.  He said my pharynx was red and suspected GERD.  I was told to take Prilosec daily and return for a follow up.  Since then I've also developed a host of other symptoms.  I've seen my regular GP 3 times, a walk in doctor, an ophthalmologist, a dermatologist and the dentist, again.  I've been prescribed an SSRI, an antibiotic for an infection that didn't exist, prednisone, prilosec, claritin and steroid eye drops.  This has all happened since mid April.  Yesterday I told the ENT everything and was basically begging him to help me figure out what's going on since nobody else seems to want to.