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Sophie17 03-12-2016 06:30 AM

Long first post! Sigh!
Hello all,

My current journey began in July 2007 when I started to get neuropathic pain in my legs and patchy burning areas over trunk and arms. Within days I got quite ill with overwhelming fatigue which lasted for four months along with nausea. It was a confusing time with many symptoms.

A couple of years prior to 2007 I got an increasingly sore and constantly burning geographic tongue. Furthermore an optometrist said I had dry eyes. I didn't think much of it at the time as the eyes didn't seem particularly troublesome to me, although the tongue was.

So in 2007, the first symptom diagnosed was peripheral neuropathy. I then started to get electric shocks through my feet and fasciculations randomly over my body......many thousands per day.

The symptoms continued to mount with loss of balance, a cough which was relentless, difficulty swallowing (throat felt paralysed), stiffness of hands and fingers, pain etc.

I saw two neurologists who did all sorts of tests and among them were ANA, Anti SSA-Ro and SSB -La, ENA which were negative. SPEP showed some mild bands and ANCA was unable to be determined due to presence of ANNA (anti neutrophil nuclear antibodies). So it was all in my head wasn't it?

In August 2008 I was admitted to hospital with the cough I had since 2007. The second day there I was diagnosed with Bronchiectasis. I have had excellent ongoing pulmonary care since then.

In late 2008, the nausea which had plagued me since the year before became relentless and I developed early satiety, vomiting and in early 2009 I was diagnosed with Gastroparesis following a Gastro Oesophageal Scintigraphy. A few months later oesophageal manometry revealed a paralysed oesophagus. Again I received medication and excellent follow-up care for the Gastroparesis.

About 2010, a Rheumatologist, with her back turned to me, declared I had Fibromyalgia. Soon after I started Lyrica (Pregabalin) for the neuropathic pain and Tramadol and Paracetamol for other muscular pain.

In 2012 during a conversation with a caring CFS/Fibromyalgia doctor I was seeing, I mentioned that I had peeling skin from my gums, along with blisters and a rough pimply feel to the roof of my mouth. He asked if I had dry eyes, I said "I don't think so" but I told him I had deep pain in my eyeballs, cracks out the corner of my eyes and streaming eyes when outside. He referred me to see an Opthamologist. The result of the Schirmers test was tear production right eye = 2 mm and left eye = 1 mm. Tear break up was done but I can't reference the result just now. His conclusion based on my history and the Schirmers was that I had Sjögrens Syndrome.

Fast forward to two weeks ago (Feb 2016) my Pulmonologist said that with some tests he did, (immunoglobulins and a couple of others), he was wondering whether I had an autoimmune condition. I told him that although it was only a provisional diagnosis it was felt I may have SS. He said that would make sense with what he was seeing, as Bronchiectasis can go hand in hand with

........this spurred me on to go to my GP this week to ask for a repeat of the tests I had done in 2007..... which were negative then.

My GP did not order the 'Ro' and 'La' but yesterday the clinic nurse told me all the tests, ANA, ENA, CRP, ANCA, dsDNA, ESR, LFT, RF, SPEP, CUE, & anti CCP came back negative, although I haven't sighted them yet.

I have to say that after getting the results, paradoxically I felt quite devastated. I was hopeful something may show up after all this time and all the years of symptoms.

So does this mean that I definitely DO NOT have Sjögrens?

Signat 03-12-2016 05:23 PM

Re: Long first post! Sigh!
Sophie, so sorry to hear what you are going through. I truly understand the anxiety and frustration of having all these symptoms and not having a definitive diagnosis! My medical journey with autoimmune symptoms is very similar to yours. Outside of the lung issues, I have experienced all of the same symptoms over the last seven years. I too have fairly benign labs where the only abnormality I had was slightly positive antinuclear antibodies at 1:80. My initial rheumatologist said I could not have sjogren syndrome or lupus because my labs did not reflect it. He was sorry I was having bad stomach problems ( I had severe gastoparisis) and having neuropathy but he would not connect it all with my dry eyes and mouth and muscle and joint pains and fatigue. I started doing a lot of research on autoimmune diseases and learned that an individual could have all the symptoms and be seronegative( normal labs). It is not common and many doctors do not believe in it. I sought out another rheumatologist who was wonderful and believed that although my labs were normal at the time, he believed I had sjogrens and/or lupus or some type of mixed connective tissue disease. He put me on plaquinel right away and over a course of six months or so tried a course of methotrexate and a course of steroids. I was not getting better so my rheumatologist suggested I see a rheumatologist at the Mayo Clinic in Rochester Minnesota. So off I went- I saw a rheumatologist and an autoimmune neurologist. After a lot of tests including a lip biopsy for sjogrens, I was diagnosed with autoimmune autonomic gangliopathy. Basically my autonomic nervous system was dysfunctional ( why gastroparisis, complete anhidrosis( inability to sweat), neuropathy and falling BP with standing). The lip biopsy for sjogrins was negative by the way and totally surprised everyone . I asked if it meant for sure I did not have sjogrens and the rheumatologist said no. The neurologist suggested a trial of intravevenous immune globulin (IVIG) for the neuro symptoms. After going back and forth with the insurance company I finally got approval for the IVIG. The autoimmune neuro told me it would take about 3 months before I see improvement of the gastroparisis and anhidrosis. He was so right- at month 3 , the gastroparisis was gone and I was sweating again. Over the next 3-6 months the neuropathy lessened significantly. I still deal wth the muscle aches and dry mouth and eyes but those symptoms seem to go up and down. I do have tear duct plugs in my eyes which help significantly as well as I use restasis eye drops. Currently on plaquinel, Mobic (anti inflammatory) restasis eye drops and get IVIG once a month. I still do not feel "normal" but have grown use to being "comfortable " with the uncomfortable. So to answer your question does your negative labs mean you do not have sjogrens or another autoimmune disease- NO!! You can ask to have the sjogrens antibodies done but even if those are negative, it does not mean a 100% that you do not have Sjogrens. As helpful it sounds to have a defenitive diagnosis the reality is that for most autoimmune diseases there is no cure only treating the symptoms and many individuals have characteristics of different autoimmune conditions but do not meet all the diagnostic criteria ( often given a diagnosis of mixed connective tissue disease). Find a rheumatologist who believes in treating the symptoms even though you do not meet the full diagnostic criteria for a specific autoimmune disease and someone who will listen to you and not dismiss your symptoms as anxiety or over reacting. Obviously there are risks to certain treatments and one must weigh those risks against potential benefits. I apologize for this long answer to your question but hopefully it is helpful. Hang in there and advocate for yourself !! Do not give up on finding some relief of your symptoms!!

Sophie17 03-12-2016 10:57 PM

Re: Long first post! Sigh!
Signat....I appreciate your reply VERY much.

My Gastroparesis was severe for the first four years and in the past eighteen months I have started to eat solid food again. Yay! Initially I lost a LOT of weight and family and friends were worried. I was on a liquid diet only (high protein liquid fluids) as my liquid digestion was relatively unimpaired but for solid food my stomach was completely paralysed. I still cannot eat a great deal at a time but it is lovely to be able to eat some vegetables (instead of just veggie soups), meat (albeit small amounts) and breads.

In Australia we can be prescribed Domperidone (Motilium) for Gastroparesis and it has been a great help. I am still on that med. I don't know how I would digest without it but I need to experiment at some point.

Interesting how the IVIG helped your Gastroparesis and Anhidrosis, neuropathy and postural BP drops. My pulmonologist has mooted IVIG twice now. Sounds like it could be very positive but expensive. He told me it is something like $20,000 per course even though the patient does not have to pay for it under our system.

I take low dose Propanolol for the orthostatic intolerance (BP drops and postural tachycardia). It has helped a lot but it is just another med to take......groan.

Your sweating comment interested me. I have never been able to sweat but conversely to you, the last three months I have been unable to stop sweating. So I don't know whether this is a new symptom related to the autonomic nervous system or coincidence.

Certainly our autonomic nervous systems have taken a hit in a number of ways.

I will do some research on AI Autonomic Gangliopathy.

So it sounds like unless I hit on a really creative Rheumatologist, that I may just go around in circles.....and do I want the hassle and the expense? But then again, unless one has an unequivocal diagnosis, who in the medical profession believes that one even has an autoimmune condition in future years??

I need to go and do some things but will reread your message as it has so much in it.

Sophie17 03-22-2016 06:31 AM

Re: Long first post! Sigh!
Well......since I replied on the 13th March I had a phone call from the doctor who ordered the tests I mentioned in my earlier post in this thread. She asked for me to make an appointment to see her. I was puzzled as the clinic nurse had said that the tests came back negative.

Last Friday was my appointment and the doctor said that the tests pointed to Sjögrens Syndromes. The ANA was 1:1280 with Speckled pattern, the SSA Anti Ro was positive, as was the Anti Ro52. The SSB Anti La was negative.

So all I can assume is that all the test results were not back when the nurse spoke to me.

I now have a referral to a Rheumatologist.

Lisa903 03-23-2016 04:59 PM

Re: Long first post! Sigh!
I would have your b6 level tested.B6 toxicity causes many issues like this. If you were taking a multivitamin or other supplements, this could be an issue.

Leech10503 01-22-2017 09:52 AM

Re: Long first post! Sigh!
Hi, I have positive Sjoren and ANA.
Symptoms was dry mouth, dry eyes, difficulties in swallowing, joint pain, stiffness hand, etc. After used of Oral seven toothpaste, Japan eye drops and drink mangoesteen juice everyday, i am getting better now. And be positive you will getting better.

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