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Old 04-30-2012, 04:42 PM   #1
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Undiagnosed and frustrated

Hello, I wouldnt normally post on a support board without having an official diagnosis but I am so tired and frustrated and need some advice.
I started having problems with my eyes about 5 years ago. I went to my former PCP who told me to use lubricant drops...not much help since I already used them. I had returned to see her several times for fatigue and aches and pains. I had an ANA test done and that came back negative. She never did anything else and each time I brought up my symptoms she would say I am too young to be feeling this bad...I was 37 at the time.
I finally switched to a different PCP hoping I would get better care. Have been going to see a nurse practioner now for a year and she is very caring but can't seem to help me with my issues. She tested me again for ANA and again came back negative. I have increasing fatigue, severe dry mouth and nose, dry eyes and feel lousy most of the time. I kept getting strange rashes on my chest and arms and she decided it was time for me to see a Rheumatologist. When I went to see this doctor he did nothing but look at the computer screen at the tests my PCP did and said well everything looks normal except for vitamin D level and went on to say "that means nothing because everyone has low Vit D". I was frustrated and said I guess I will just have to live with this then and his reply was "well you already do". Needless to say I did not want to return to this man.
I have been struggling each day since November (when I had this appt). I spent the weekend on the couch feeling like I had been hit by a bus. Had a rash on my forehead and poor sleep from getting up every 2 hours. This morning I woke up with swelling behind my ear and a painful twinge in the front of ear...kind of like when you eat something really sour. I called to get an appointment and got in this afternoon. I had a breakdown in the doctors office, started crying and could not stop. I felt like an idiot sobbing but I am so frustrated. When my PCP asked me if I use anything for my dry nose I laughed and went on to tell her about my nightstand. The top of my nightstand I have vaseline, Biotene mouth gel, gel eye drops, regular lubricating eye drops, visine soothing eye pads, saline nasal gel, biotene spray and a tall glass of water. I use all of this each night..through the night. I also have a humidifier at work.
She is sending me to a different rheumatologist. My question is why is it so hard to get a diagnosis or to even rule one out? I am just learning that a negative ANA does not mean that sjogren's is not present. I figured since it was negative I couldnt possibly have it. I was never given the test for Ro and La (cant rember the full letters), never even discussed a lip biopsy or anything else for that matter.
I told my PCP today that I live life feeling like the flu is coming on almost every day. She looked at me and said we will keep looking and she wont give up. She is very kind but I am feeling like I'll never get an answer. Sorry this is so long....I really needed to vent :-(

 
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Old 04-30-2012, 05:13 PM   #2
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Re: Undiagnosed and frustrated

There are sero-negative Sjogren's patients (somewhere between 20 - 30% will not test positive for ANA or SS-A/SS-B). Interestingly, the vast majority of patients with Sjogren's have a positive rheumatoid factor, so if your RF hasn't been checked, that might be one thing to request. Even if all of your bloodwork remains normal, if all of your symptoms are pointing to Sjogren's, it might be worth considering a lip biopsy to either confirm or rule out Sjogren's.

 
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Old 04-30-2012, 05:23 PM   #3
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Re: Undiagnosed and frustrated

Thank you, I have sore joints that come and go so I was tested RA and that was normal. Every single thing I have been tested for is normal except for low Vit D and above range thyroid antibodies (TSH is always borderline). I have not yet been tested for SSA and SSB, I'm guessing they will do that. Not sure why it hasnt been done before. If all comes back normal I will ask about the lip biopsy. I am willing to do anything at this point to find out what is wrong with me. I'll jump off a bridge in a duck suit if that would help!

 
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Old 05-08-2012, 10:10 PM   #4
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Re: Undiagnosed and frustrated

My tests were negative ana but positive ro test, I have sore eyes, have had for a long time. Isnt it amazing that it take a person to break down and cry from frustration to get some one to take notice. My doctor GP didnt even know about a lip biopsy being a diagnosis for sjrogrens? I am aneamic, low platelets, low wbc. Swollen lymph glands, achy joints and nausea on and off. its take 7 years for me to get a diagnosis. Hang in there, they will eventually hit the diagnosis, amazing how many doctors get there nose out of joint if you are well read and informed about your own body. They are to quick to dismiss a patient. I remember watching a medical show on tele and the doctors said when we look at a patient and here hoof beats, we look for horses not zebras, in other words they look for run of the mill stuff. I quoted this to my doctors, he looked at me stupid and said, OH we look for every thing?? Be well informed, and educated on what ever you are suffering, people die, because doctors wont listen. That happened to my sister, she had a lump near her thryroid and after not being refered to a specialist, and telling her it was normal and not to worry. 12 months later she was dead. Thyroid cancer. They found it to late. It was a total stuff up. And it spread to the brain stem, she was 47. Been your own advocate for your health....good luck,

 
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Old 05-09-2012, 02:44 PM   #5
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Re: Undiagnosed and frustrated

Estelle, I am so sorry to hear about your sister. It is sad that doctors will not listen. It's as if they think because we are not physicians that we couldnt possibly know if something was wrong with our own bodies. All the doctors I have seen seem to try very hard to come up with every other reason for symptoms...from meds to lack of sleep, etc. It's like they want to avoid Sjogren's Syndrome at all costs.

I saw a new rheumatologist yesterday and she was much more thorough and understanding than the last doctor that basically blew me off. She spent over an hour with me doing exams, listening to symptombs. She believes I have fibromayalgia even though I only have about 8 of the tender points but boy do they hurt. My problem is I have tons of tender points they just don't all conincide with the diagnostic points (figures I would be different). She said she would treat me for the fibro and hopefully that will help some. I also had lab work done for SSA & SSB. She said that even if it comes back negative that doesnt mean I don't have Sjogren's and if comes back positive it doesnt mean I do have it. I'm more confused than ever! :-)

I have an appointment with eye doctor tomorrow and she said that can help towards a diagnosis. I know getting a diagnosis will not change much, I will still have the awful symptoms but at this point I really need a name for what is going on so I don't feel like I am crazy.

 
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Old 05-09-2012, 05:42 PM   #6
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Re: Undiagnosed and frustrated

desertlady42
Hi there? Your story sounds pretty similar to mine and my story has been going on for many years. I have now found a decent rheumy who is listening and that is half the battle in my opinion. Just to get someone to listen, to take you seriously, to not make you feel like a fraud and believe that the symptoms you are experiencing every day are real. Not to much to ask, is it?
I don't know if I have Sjogrens but I am now being tested for it. My doctor has never heard of it so thats not a great help. BUT, you have to be strong and carry on until you get answers, don't be cast aside and left to suffer, keep banging on doors until you get a result. It may not be Sjogrens it could be something else, but you are entitled to try and find out. Sometimes I genuinly believe they just don't know, and if they don't then fine, wait a while and ask for tests again. Things can change over time and results may change.
I have had the "go see a shrink" attitude, its all in your head, bla bla bla. I did go to see a phsyciatrist and she said I was fine mentally, but understood that I was low due to feeling ill for so long. And if you do suffer from depression which is perfectly ok, just remember this, its secondary to the primary symptoms!. I do suffer from anxiety from time to time, is it part of Sjogrens, I don't know. One thing I do no though, I won't give up because what I experience and suffer with is VERY real, whatever that label may be. Good luck and keep going...............

 
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Old 05-09-2012, 08:43 PM   #7
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Originally Posted by desertlady42 View Post
Estelle, I am so sorry to hear about your sister. It is sad that doctors will not listen. It's as if they think because we are not physicians that we couldnt possibly know if something was wrong with our own bodies. All the doctors I have seen seem to try very hard to come up with every other reason for symptoms...from meds to lack of sleep, etc. It's like they want to avoid Sjogren's Syndrome at all costs.

I saw a new rheumatologist yesterday and she was much more thorough and understanding than the last doctor that basically blew me off. She spent over an hour with me doing exams, listening to symptombs. She believes I have fibromayalgia even though I only have about 8 of the tender points but boy do they hurt. My problem is I have tons of tender points they just don't all conincide with the diagnostic points (figures I would be different). She said she would treat me for the fibro and hopefully that will help some. I also had lab work done for SSA & SSB. She said that even if it comes back negative that doesnt mean I don't have Sjogren's and if comes back positive it doesnt mean I do have it. I'm more confused than ever! :-)

I have an appointment with eye doctor tomorrow and she said that can help towards a diagnosis. I know getting a diagnosis will not change much, I will still have the awful symptoms but at this point I really need a name for what is going on so I don't feel like I am crazy.
Hi there,
I think a rhueme doctor is the way to go, I never relised they did so much with auto immune problems. Here in Australia, you need a referral from your own GP. And they are willing to give it. I bought a couple of books on sjogrens and auto immune disease. They are very helpful. I read as much as I can about it. There seems to be a lot of auto immune problems in my family. So starting with medical family history is really valuable when you see the rhueme doctor. Mine asked my complete family medical history.
Good luck, keep in touch... and thankyou.

 
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Old 05-11-2012, 11:05 AM   #8
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Re: Undiagnosed and frustrated

Hi Topsy, Good luck to you too and hang in there!

 
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Old 05-11-2012, 11:08 AM   #9
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Re: Undiagnosed and frustrated

Estelle, I have loads of autoimmune disease on my moms side of the family. Every Aunt has a different disease from Crohns to Scleroderma. I did tell the Doctor about this and she said it is very likely that I too have some form...just don't know what yet.

 
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Old 05-11-2012, 11:11 AM   #10
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Re: Undiagnosed and frustrated

My test results came back for the SSA & SSB and they were negative. Baffles me that I feel so incredibly sick but my bloodwork comes out normal.

I had my eye appointment yesterday and he did the green dye test (can't remember the name) and I had large amount of staining. He also said I had a lot of inflammation. He is putting me on steroids drops for a few weeks and then to Restasis or possibly plugs. So I have the eye thing but no anitbodies, not sure where it will go from here. I guess the dentist will be next. Doctor wants me to see dermatologist too but if I don't have a rash at the time I don't think that will be much help.

At least I may now get some relief with the eyes. The Genteal Gel drops arent even working anymore. For now I am on my own for the dry mouth, dry nose and pain....I'll get through it!

 
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Old 05-11-2012, 03:42 PM   #11
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Re: Undiagnosed and frustrated

Try Ayr Saline Gel for your dry nose. It's OTC. You just put a dot of the gel on a Q-tip and spread it inside the lower part of your nostril, and then use the other side of the Q-tip for the other nostril. Easy to use and it lasts a long time, unlike saline sprays.

 
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Old 05-19-2012, 08:19 PM   #12
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Re: Undiagnosed and frustrated

I finally got a dr (ENT) to do a lip biopsy and I trusted his skill. By the way, it wasn't bad at all. The worst part was the shot and that was easier than getting novacaine at the dentist.
However, the test came back inconclusive and to go by clinical symptoms. No indication of how many glands were taken either. So the slide is now being sent to UCLA.
I want to know what is going on too. I have been diagnosed with sicca syndrome but my blood work is negative. I understand your frustration. Keep trying.

 
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Old 06-05-2012, 11:22 AM   #13
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Re: Undiagnosed and frustrated

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Try Ayr Saline Gel for your dry nose. It's OTC. You just put a dot of the gel on a Q-tip and spread it inside the lower part of your nostril, and then use the other side of the Q-tip for the other nostril. Easy to use and it lasts a long time, unlike saline sprays.
Hi Fanitne, thanks I have just started to use the Ayr nasal gel in the last month but I don't find it very helpful....guess it is better than nothing. I have to say my dry nose is probably near the top if my most annoying symptoms. I wish there were other options out there because the saline rinses only seem to make my nose more dry and bleed even more.

 
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Old 06-05-2012, 11:30 AM   #14
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Re: Undiagnosed and frustrated

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I finally got a dr (ENT) to do a lip biopsy and I trusted his skill. By the way, it wasn't bad at all. The worst part was the shot and that was easier than getting novacaine at the dentist.
However, the test came back inconclusive and to go by clinical symptoms. No indication of how many glands were taken either. So the slide is now being sent to UCLA.
I want to know what is going on too. I have been diagnosed with sicca syndrome but my blood work is negative. I understand your frustration. Keep trying.
Hi Mel, I hope you will finally get an answer. It must be frustrating to go through a lip biopsy and have inconclusive results :-(. I don't even know where to start with the lip biopsy..ENT, dentist? Maybe when I have my follow up with the Rheumy she will refer me.
I followed up with my eye doctor after using steroid drops for two weeks and he decided to put punctal plugs in right there and then. So far they are not helping and my dosage of steroid drops has gone from 4 times a day to 6. I definitely have the diagnosis of severe dry eye, I just have to get the other problems checked out. So many doctors to see and so many payments to make!

 
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Old 06-10-2012, 07:13 AM   #15
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Quote:
Originally Posted by desertlady42 View Post
My test results came back for the SSA & SSB and they were negative. Baffles me that I feel so incredibly sick but my bloodwork comes out normal.

I had my eye appointment yesterday and he did the green dye test (can't remember the name) and I had large amount of staining. He also said I had a lot of inflammation. He is putting me on steroids drops for a few weeks and then to Restasis or possibly plugs. So I have the eye thing but no anitbodies, not sure where it will go from here. I guess the dentist will be next. Doctor wants me to see dermatologist too but if I don't have a rash at the time I don't think that will be much help.

At least I may now get some relief with the eyes. The Genteal Gel drops arent even working anymore. For now I am on my own for the dry mouth, dry nose and pain....I'll get through it!
hi desertlady. a lot of doctors don't know enough about autoimmune diseases. my doctor never suspected anything but menopause until i started doing my own research and making suggestions to her about...."could it be this?" this all started right when my menopause started and i just dubbed it up to a really bad menopause. my symptoms were weird, like tachycardia for 10 to 12 hours every 6 weeks, (cyclical). feeling like i was drunk, (total disorientation), body and bone aches and pains, (i have osteopenia) etc. since fibro and autoimmune disorders run in my family, i asked my gp if she would humour me and have an ana test done. she said sure. for the frist 3 years it was low level but going higher each year and this year....back to normal. even had an ssa-ro test that came out positive. went to a rheumy and he diagnosed me with fibro and then brushed me off. turns out he is due to retire. go figure! i've read articles that say....even though test results are positive and become negative...it doesn't mean that you don't have the disease. it may mean it can come back worse. so true. had an interview a few days ago. my feet started to freeze, then right up to my knees. this became very painful even to walk. then the instant tachycardia and feeling so brain fogged i was worried about driving. i did make it after taking 7.5 mg of diazepam. needless to say....i was a spastic idiot, waving my arms like a frenchman and talking too fast in the interview. don't think i got the job and truthfully....i wouldn't have hired me either after thinking about what i was feeling like.
anyway....i drink a few swallows of milk before i go to bed at night. i find slimy drinks keep the dryness at bay until morning. restasis is a steroid, so your gp is probably going to give you a gel steroid for bedtime. i use saline solutions in my nose before bed and if i have sores in my nose i use a q-tip with vaseline on it. i did use restasis at one time but is very expensive so i went off and have been trying different over the counter eye drops. one i find soothing is "clear eyes, for dry eyes". everyone is different so people just have to experiment.
another thing i wanted to say is that....if it is sjogrens....symptoms can be fleeting....you will have them and in a couple of days they disappear. this type is the hardest to diagnose because the symptoms disappear before you visit your gp. hope this helps and keep doing the research, you will figure it out and you will survive!

 
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