Newbie--feeling worried and frustrated

[Su3000]

Hello Everyone,

I'm new to this forum.  My story is somewhat long and convoluted so thanks in advance for reading! 😊  I first presented with symptoms of nausea, fatigue, dry mouth and bilateral swelling of the parotid glands (which were huge and painful).  I went to the GP and started down the road of scores of blood work.  All of my blood work came back normal for infectious diseases.  At that time I was given 2 courses of different antibiotics and sent home.  All of my symptoms persisted.

I returned to the GP and said I'm still sick.  It helped that my parotid glands were so big that they were fully visible just from looking at me.  I was sent for more blood work and all of it came back normal---ESR, CRP, ANA, SSA and SSB.  The GP decided to send me to an infectious diseases specialist and he examined me, talked through my symptoms with me and said I have Sjogren's since he knew that a large percentage of Sjogren's patients are seronegative.  He referred me to a rheumatologist.

Several weeks later I see the rheumatologist.  All of my original symptoms that I've now had for three months are present plus, dry eyes (causing blurred vision) early symptoms of gastritis (I recognise them as I had acute gastritis 2 years ago.) and aching upper arm muscles, elbow and wrist joints.  I explained all of my symptoms and was sent for the same battery of blood work, a chest X-ray and liver ultrasound (my LFT was elevated) At that time the rheumy also prescribed meloxicam and Somac.  The rheumy seemed reluctant to diagnose me with anything or to look at Sjogren's.

Another three weeks later, I go back for the results and all blood work is normal.  I am back to square one.  I still have all of my symptoms and now I have to get a lip biopsy.  My biggest concern is that the lip biopsy will be negative as well and I'll be left with no diagnosis and almost no treatment, shuttled around to doctors.

At times I feel like I'm going crazy and it's all in my head.  I struggled with bouts of fatigue and aches and pains for a few years but just thought it was a product of getting older---I'm 48.  It wasn't until my glands swelled up that the ball started rolling.  I had a cry last night as the frustration was overwhelming.  Luckily my husband and kids are very supportive. 

Is there any other illness with all of these symptoms?

Sorry for the long rant.

Su3000😥

P.S. I was also tested for sarcoidosis but all came back negative.

[Joe S.]

Welcome to the forum. My Dx was on symptoms (Dry eyes, nose, mouth, skin and Bum). It typically takes 7 years to get a Dx. My. Eye Dr and Dentist noticed before the Rheumy said anything. The Rheumy sent me to a Neuro. When I asked the Neuro why I was seeing him,"because your Rheumy wants me to test the progress of your Sjogren's". The Rheumy would not tell me that. I went to a different Rheumy..

I can not take the traditional medications but I have posted almost every thing I take in my signature.

If you think of trying any of my over the counter supplements, please check for counter indications, side effects and drug interactions first.

[Kathy57]

I think you sound like Sjogrens Syndrome to me.  I'm seronegative as well but still feel pretty darn sick with it!  I am being appropriately treated because my Rheumatologist feels I have seronegative Sjogrens at this time,  I feel much better with plaquinil and my Evoxac.

It can be a very miserable disease.  They should at least treat your SICCA symptoms.  There is help and there is hope but you just have to find an intuitive and smart Doctor.  Don't give up!  Fight fight fight!!
Kathy

[Su3000]

Thank you Joe and Kathy for the replies!  I really appreciate it. 😀 

I have an appointment with an ENT in 3 weeks for the initial consult before the biopsy.  He seems very nice as he recently saw my daughter.  If my rheumy still refuses treatment, I may have to go to another one.  I live in a small city so all the rheumatologists know each other, which makes the situation a bit awkward.  I have a wonderful endocrinologist (for hormonal migraines) so I'll ask her who she recommends.

Joe, I'll definitely give some of those supplements a try.  What has worked for the dry nose as I have it and have experienced sores in my nose?  I've heard saline washes....guess I'll have to try those too.

Kathy, I really do need to fight for this.  I fight when it comes to my children and my husband (a type 1 diabetic), just when it gets to me, I run out of steam. 

[araminta]

Just to say everyone I've seen so far (GP, ophthalmologist, rheumy, dentist) does not think I've got Sjogrens, though dentist thought my mouth was rather dry and ophthalmologist prescribed Hylo Forte for dry eyes.   Blood tests were normal.   

I've still got all the symptoms, but like you I am putting off the salivary gland biopsy as dry mouth is not my worst symptom, and so I suspect the test may come back normal.

So at present I am just trying to tackle the symptoms.   I chew gum most of the day and have Xylimelts beside my bed at night.   I use saline spray for dry nose at night, moisturise my skin morning and night, use the Hylo Forte drops in the day and organic castor oil at night.   I also do warm compresses most evenings, and use diluted tea tree oil to cleanse upper and lower lids.   These things help.   I still haven't found much that helps with the fatigue, though it seems eating smaller but more frequent meals might make a bit of a difference.   I hope this is some help. 

[Su3000]

Hi Araminta,

I understand how you feel.  I'm also worried about the biopsy as my lower mouth seems to have more saliva but my tongue and upper mouth is quite dry.  I'm going to bring that up with the ENT when I see him.

I am still getting used to all of this, and will have to make time for more of a moisturising routine.

Thanks for your reply. 😊

[Joe S.]

Sipping on Arnie Palmers seems to help me. The lemon aid will act similar to saliva and loosen up the snot. Some on the board use a netty pot to provide moisture to their nose. The damage to my neck prohibits me from using one.

[quietdynamics]

Su3000  Yes, for some, self included, getting to cause of illness can be a roller coaster. I am fortunate to have positive labs. Even so, it was a journey of years as GP did not understand my symptoms. I self advocated and still do.

I follow the work of mainly PennMed, Dr. Vivino and Hopkins, Dr. Birnbaum and Dr. Baer.
Here is a link to a power point presentation by Dr. Baer of John Hopkins. It may help you to form your questions for upcoming appointment.

http://www.garheumatology.org/files/2013_Speakers/Sjogren's%20-%20Baer.pdf

[Su3000]

Quiet dynamics, thank you for the link!  I will take a look and formulate some questions before I go back to the rheumy.  Hopefully, she'll respond well.

I found it puzzling that she said she was pushing for a lip biopsy so that she can watch for lymphoma more closely.  Um, why wouldn't she do that anyway as a precaution?  Obviously I need to be more prepared and assertive!

[KatyB]

No answers for you, but I completely understand your frustration. I have not been diagnosed with Sjogren's yet although I'm pretty sure I have it. But the only abnormal lab result or test I have had so far is a highly elevated Rheumatoid Factor. (I have not yet had a lip biopsy though....)

My first "noticeable" symptom was peripheral neuropathy in hands/arms/face, which started last fall, and which several doctors attributed to anxiety.  But looking back I can see that I have had mild symptoms of dry mouth & dry eyes for years! Plus an episode of gastritis a year ago that I think is also related.

The first rheumatologist I saw (back in January) was so hostile that she made me cry.  She clearly thought my symptoms were all in my head until my Rheumatoid Factor came back abnormally high.  Second rheumatologist was kinder and more thorough but basically told me that Sjogren's doesn't cause neurological issues. (sigh).  I now have an appointment with a rheumatologist at Mass General (in Boston) in May, I am really hoping that he will at least help me figure out what is going on.  The other specialists I have seen have been empathetic but don't seem to want to do much except refer me back to rheumatology.  It is all so frustrating, I totally understand having a meltdown about it!

[Su3000]

KatyB wow!  I am so sorry you've gone through all of that.  Belligerent doctors are horrible.  I had an ob/gyn like that once.  I hope you get much more help and understanding from the new doctor! 😊
Maybe this will help you, it's an article comparing MS and Sjogren's and it talks about being systemic and affecting the nervous system http://scarysymptoms.com/2012/02/multiple-sclerosis-vs-sjogrens-syndrome/

I've decided that I'm going to print out studies etc.  before my ENT visit and my next rheumy visit.  I used to be a research scientist (neuroscience) and should know better than to get railroaded by a doctor.  Lately, I've been so worn down, I just let it happen.  Especially since it's not my area of expertise, I deferred. 

[Lelagrace]

There are other inflammatory diseases that cause these symptoms.  They are equally difficult to diagnose.  The one I wonder about is sarcoidosis.  It's thought of as a pulmonary disease but in fact it can cause every symptom you have.  The trouble is they look first in the hilar lymph nodes via chest X-ray and if they don't see it there they rule it out.  Truth be told, there are many people with sarcoid whose lungs and lymph nodes are never affected.  The only way to firmly diagnose it is through a biopsy, just like Sjogrens.  I should think a parotid gland would be easier to biopsy than lungs.  Look up sarcoidosis of the parotid gland and see what you think.  And don't give up.  Immune system diseases are excellent at fooling doctors and we all know doctors don't like to be fooled.  So you must be nuts.  You're not. 

Peace to you
Grace