About Me

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I was recently diagnosed with Distal RTA & Sjogren's Syndrome, which has been a spiritual wake up call for me. I decided to create a blog to empower myself, educate my family & friends and create support for others. I live in Central Florida with my partner, my 10-year old son, an epileptic pug and a rescued cat. I am mecurial, sensitve, passionate and intense.

Thursday, December 29, 2011

Wonder Woman Never Got Sick

If you haven't been to the ChronicBabe.com yet be sure to go there as soon as you finish reading this post. It's a fabulous resource for women living with chronic illness. I read an older article there this evening and there were some lines in it that I identified with so strongly I had to share it here. "As a feminist, being ill puts a whole new spin on being sick. Shouldn’t I be independent, in control, not a victim? How do I resign myself to needing help, to having to ask anyone for anything? The fragile porcelain doll was never my female ideal. I am a child of the seventies. Wonder Woman never got sick. The needs of your body are valid, and you need and deserve to have them met. Not asking for help when you need it is a great way to go from under the weather to sick. Feminists value the female body. Let that begin with yours." According to the original post this came from, Colleen McKee is a teacher, writer, and activist as well as the co-editor of Are We Feeling Better Yet? : Women’s Encounters with Health Care in America.

Wednesday, December 28, 2011

Thank you for this song 10,000 Maniacs!

I've always been a big fan of Natalie Merchant's voice, especially when she was with 10,000 Maniacs. The song Like The Weather always struck a chord with me as I associated it to how I felt when going through depression. I heard it tonight for the first time in awhile and in light of my diagnois, it had a whole new meaning. I looked up the lyrics for you to read below and here's the link for their live performance of it on MTV Unplugged. I'd be curious so hear from anyone who feels an affinity to this song as I do. Like The Weather by 10,000 Maniacs Color of the sky as far as I can see is coal grey. Lift my head from the pillow and then fall again. Shiver in my bones, just thinking about the weather. Quiver in my lip as if I might cry. Well by the force of will my lungs are filled and so I breathe. Lately it seems this big bed is where I never leave. Shiver in my bones, just thinking about the weather. A quiver in my voice as I cry, What a cold and a rainy day. Where on earth is the sun hid away? Hear the sound of a noon bell chime. Well I'm far behind. You've put in 'bout half a day while here I lie With a shiver in my bones just thinking about the weather. A quiver in my voice as if I might cry, What a cold and rainy day. Where on earth is the sun hid away? Do I need someone here to scold me or do I need someone who'll grab and pull me out of four poster dull torpor pulling downward. For it is such a long time since my better days. I say my prayers nightly this will pass away. The color of the sky is grey as I can see through the blinds. Lift my head from the pillow and then fall again Shiver in my bones just thinking about the weather. A quiver in my voice as if I might cry, A cold and a rainy day. Where on earth is the sun hid away? A cold and a rainy day I shiver, quiver, and try to wake. (From: http://www.elyrics.net/read/0-9/10000-maniacs-lyrics/like-the-weather-lyrics.html)

Tuesday, December 27, 2011


Last night I was thinking that there must be stages or phases that one goes through from the time they are diagnosed with a chronic illness to when they have fully accepted it and can say they are living well. So I did some online research today and found out I was right! The following came from Felicia Fibro's blog.

Dr. Steve Overman spoke next and much of his presentation discussed ideas from a book he co-wrote with his patient who has fibromyalgia, You Don’t Look Sick: Living Well With Invisible Chronic Illness. He pointed out that, “‘there is no cure’ does not mean that you cannot be well.” That is something that I whole-heartedly agree with. One of the most important focuses of what he spoke about are the “four phases to chronic, invisible illness:

1.GETTING SICK: includes the crisis of the onset of illness and a person’s fear of the unkown. A time to diagnose, find treatments that work, find hope, and help you let go of fear.
2.BEING SICK: requires treating the patient so that inflammation and pain are controlled. The physician empathizes with the patient’s natural feelings of frustration, anger, resentment, and loss. A time to stabilize medications, improve your home program, and increase social activities.
3.ACCEPTANCE: requires working through the grief that occurs when it becomes clear that “The illness is not going away.” A time for mourning losses. A time to find new ways you can give of your gifts.
4.LEARNING TO LIVE WELL: occurs when a person finds meaning in her/his illness, and uses this understanding to rejoin and give back to family and society. A time for reducing medications, increasing activities and finding meaning.”

Since it hasn't even been a month since I was diagnosed I would say I'm in stage 1 and it's hard being here. I feel like I've learned so much already yet I feel like there is so much more to learn! I don't feel that my family and friends get it yet (except for my BFF) and tonight my partner and I had our first arguement over it. She's been gone house-sitting for the last week and won't be home until Friday, my son came back from a week with his dad yesterday and today I had the worst day in months, with me sleeping almost all day. Even though my son did very well today, in spite of my inability to be fully present, I told her how concerned I am about her starting a second job and being gone so much. But no matter how much I tried explaining it to her, she didn't get it. She actually said the words I've been dreading to hear - "you've been sick this whole time so nothing is different". How can she not understand that EVERYTHING is different now? Number one being that I will no longer push through the pain and fatigue in order for others to not give me such a hard time. And number two being that I now know how important it is for me to be kind to myself.

I am trying to remember that she is looking at this from a different standpoint. Her number one concern is providing for us. She will do whatever it takes to make sure we have food on the table, bills paid and a roof over our heads. Without her doing that we would have none of it cuz I certainly don't help much. I guess we just have to find a balance, learn to understand the other persons fears and maybe get some therapy. I'm sure there are therapists who can help us cope with this individually and as a couple.

Well it's late, the dog needs to go out and I should get to bed. Even though I'm tired, I spent so much of the day there that I just don't want to go back! I'm going to have to invest some time, creativity & money (ha!) on creating a fabulous, comportable, lucious, peaceful bed/bedroom retreat for myself!!

Blessings to my one follower this late night!

Friday, December 23, 2011

My Doctor Situation

Yesterday my mom sent me a text asking how I was feeling. She was especially wondering about my leg pain and was wondering if it was better since the doctor said he thought it would. It made me realize some things I hadn't told her and others close to me. I would like to share it here as well.

The doctor who diagnosed me in the hospital is a nephrologist and he is the only doctor I am seeing at the moment, as I do not have health insurance (I've applied for Medicaid and we're praying it comes through). He did say my leg should get better and this is because of the immune-supressant he put me on, but it is not a guarentee.

He will be the doctor I go to for any issues dealing with the RTA and for now he will monitor my blood in relation to the auto-immiune suppressant since he prescribed it. Normally a rheumatologist diagnoses Sjogren's but since he discovered it and I can't afford another doctor just yet, he is treating me right now. When the insurance comes through I'll be seeking out a good rheumatologist. Anyone know a good one in Central Florida?

The reality of Sjogren's is that it is systematic and the meds we use may not stop it but slow it down. Plus I may have to try different ones or combinations until we get the right one for me. In addition, the rheumatolgist will be able to do other tests and make other diagnosis of other things that go along with Sjogren's. For example he and I already know that I have peripheral neuropathy as well, but in order to properly diagnos that there are other tests a rheumatologist or neurologist will have to do. Although I love my nephrologist and will contine to see him for the RTA, I feel it is imperative that I follow protocol and have a good rheumatolgist who can oversee all that Sjogren's will do to me.

The issue with my leg is most likely two fold. Part of it is the RTA as the acid in my blood began attacking my bones so some of that damage cannot be repaired. The other part is the Sjogren's where my white blood cells are attacking my moisture-producing glands; without moisture between your joints you will have pain, swelling and inflamation. So right now we don't know which one, or if both, are what is causing the pain in my leg. My leg hurts all the time, some days its barely noticable and other days it is horrible. And some days, like today, it starts out hurting some, then it doesn't hurt much at all, and then it hurts so bad I could cry. I don't know if I will ever get an answer or total relief from this. I hope that I will. I plan to talk to my doctor about at my next appointment, follow that up when I see a rheumatologist and one day I would like to see an acupuncturist who may be able to take away all the pain.

I have realized that there are so very many things that have been wrong with me health-wise that I've been suffering through and only now realize are because of Sjogren's. It's an exhausting list of ailements.

By the way, the reason that Sjogren's is more prevalant in my posts is because the medication I'm taking for the RTA has balanced out my levels; so as long as I continue to take the medication I shouldn't have any problems with this on a day-to-day basis (unless the damage done to my bones is irreversable). But with the Sjogren's thats not the case. There is a very real possibility that I will continue to develop other autoimmune disorders with this; rarely is Sjogren's the only one you have.

It's been a long, rough day and I am wiped out. For some reason my spell check isn't working and I'm just to damn tired to figure it out - so I apologize for the typos folks!

Peace Out.

Thursday, December 22, 2011

Imagine Having Sjogren's: Trying to Explain my Life to Family

Christmas Day will be the first time I am together with all of my family since being diagnosed with Sjogren's Syndrome and I'm nervous about it. What if I get a flare-up while I'm there? What if the daughters (my sister, cousin & I) are cleaning up after our meal like we always do, and I get hit with a wave of heat, pain, fatigue, dizzyness, numbness or a myraid of other possible complications that Sjogren's has brought to my life. Can I tell them I have to sit down and can't help anymore? Will they understand or will I hear snarky comments or get a lecture on how everyone has health issues and we need to push through? Will they assume that since I've lived with this for 9 years and pushed through I should continue to do so?

Perhaps the only questions I should be asking myself is, "How can I help them to understand how being diagnosed with Sjogren's Syndrome has profoundly changed me?" and "How can I help them to understand what it is like to now live with Sjogren's?" I scoured the Internet looking for the right article to send them. I've found some that I liked but nothing was grabbing me, screaming out "YES! This is the one!"

Then another lighbulb went on and I thought, 'Well duh Tara! Just send them to your blog!' But for some reason I can't put my finger on, I'm not ready just yet to do that. I realize that is something I have to figure out for myself, but I'm putting it off until after the holidays. So then, how do I do this? Perhaps I can use a post from spiritlove on wwww.inspire.com but alter it some to better describe me. Below is what I came up with; wish me luck!

1. IMAGINE being hospitalized 3 times and seeing 8 different specialists over 9 years before a doctor figures out what is happening to you. That is Sjogren's
2. IMAGINE having chronic fatigue that can take the living out of life. That is Sjogren's.
3. IMAGINE your dry mouth and tooth decay is connected to an autoimmune disease. That is Sjogren's
4. IMAGINE losing feeling in your feet because your nerves are damaged and your circulation is bad. That is Sjogren's.
5. IMAGINE that it is terrifying to be without your water bottle to alleviate your dry mouth. That is Sjogren's.
6. IMAGINE when water is not enough to replenish the lacking moisture in your body. That is Sjogren's.
7. IMAGINE waking up every day and your eyes are blurry even with your glasses on. That is Sjogren's.
8. IMAGINE feeling as if there is sand in your eyes and nothing helps. That is Sjogren's.
9. IMAGINE having to regularly see a rheumatologist, dentist, opthamologist, OB/GYN, psychologist, neurologist, endocrinonlogist, dietician and gastroenterologist. That is Sjogren's.
10. IMAGINE being constantly fatigued and unable to participate in life and you're told "You are just depressed." That is Sjogren's.
11. IMAGINE being so tired that the word 'fatigue' doesn't cover it, that 10 hours of sleep doesn't help and that your friends & family think you're just lazy. That is Sjogren's.
12. IMAGINE knowing all of your teeth must be extracted and you'll have to get dentures because you don't have dental insurance and can't afford to get implants. That is Sjogren's.
13. IMAGINE knowing you are sick and being told you are crazy. That is Sjogren's.
14. IMAGINE you have pain in one of your legs that never goes away. Some days it's tolerable and you just have a slight limp. Other days the pain is non-stop and you cannot walk without assitance. That is Sjogren's.
15. IMAGINE living with a chronic disease most people have never heard of and cannot pronounce. That is Sjogren's.
16. IMAGINE having your hands go numb when you're simply holding a book to read, typing an email, writing a letter or filling out forms. That is Sjogren's.
17. IMAGINE the debilitating disease you suffer from is sometimes referred to by physicians as a "nuisance." That is Sjogren's
18. IMAGINE painful burning sensations in your feet that keep you awake at night. That is Sjogren's.
19. IMAGINE having a disease with no simple solutions or treatment. That is Sjogren's.
20. IMAGINE having a disease that is hard to explain to your best friend aand mother. That is Sjogren's.
21. IMAGINE having a disease that can leave you disabled, but you don't look sick or disabled. That is Sjogren's.
22. IMAGINE making plans to go somewhere with a friend but you're forced to cancel because you're exhausted, and your freind gets angry and complains that you're unreliable. That is Sjogren's.
23. IMAGINE having episodes of joint pain with no explanation. That is Sjogren's.
24. IMAGINE seeing the strain and extra work your mate has due to your health and worrying how it will affect your relationship. That is Sjogren's.
25. IMAGINE feeling terrible constantly, and being told it's all in your mind. That is Sjogren's.
26. IMAGINE having a disease with no cure and only symptomatic treatment options. That is Sjogren's.
27. IMAGINE worrying about how this is affecting your son and not being able to be more active in his life. That is Sjogren's.
28. IMAGINE feeling as if you have the flu, all day, every day and no one knows why. That is Sjogren's.
29. IMAGINE having brain fog so bad that it takes you a few minutes to remember the name of your favorite movie. That is Sjogren's.
30. IMAGINE realizing that you are forgetting important things that affect your life. That is Sjogren's

Wednesday, December 21, 2011

A Primer on the Neurological Complications of Sjogren's

Neurologic complications
By Julius Birnbaum, MD
Johns Hopkins Neurology-Rheumatology Clinic
The neurological complications of Sjogren’s syndrome are extensive and range from cognitive difficulties to burning toes and feet.

Introduction to the nervous system

The nervous system is divided into two anatomic compartments:

The “Central Nervous System” – or CNS – includes the brain and the spinal cord;
The “Peripheral Nervous System” – or PNS – includes larger and smaller nerves, connecting muscles to the spinal cord.
Sjögren’s syndrome can cause inflammation and damage to both the CNS and PNS.

Peripheral neuropathy of Sjögren’s syndromes

What is neuropathy?

Neuropathy, which means inflammation and/or damage to the peripheral nerves, can be affect patients with Sjögren’s. Neuropathy can cause various symptoms, from “numbness,” to “coldness;” in its most severe, neuropathy has been described as “burning,” “lancinating” or “feeling like my skin is on fire”. Neuropathy can also cause weakness and clumsiness.

How does my doctor diagnose neuropathy?

The first step is to take a careful history and do a physical examination. The pattern and description of symptoms, which may include pain and weakness, may suggest damage to the peripheral nerves. A neurological examination is crucial in providing objective evidence of peripheral neuropathy. Weakness may be present, which is typically greater in the toes and fingers, than in the larger muscle groups of the arms and legs. Your physician may test your reflexes. Whereas a reflex hammer should elicit emphatic lurches of arms and legs, patients with neuropathy may not have any reflexes. Lastly, your physician may test your ability to appreciate temperature, a sharp pin, and vibration. If the neurological examination confirms a peripheral neuropathy, then you may have a nerve-conduction test, looking at the integrity of nerves and muscles.

Why is neuropathy under-diagnosed or under-treated in Sjögren’s syndrome?

1. Sjögren’s may uniquely target nerves which are not tested on normal nerve-conduction tests.

Neuropathy can target nerves either of larger or smaller caliber, respectively referred to as a “large-fiber” neuropathy anda “small-fiber” neuropathy. Symptoms of large-fiber neuropathy include weakness and poorly localizable numbness and are associated with abnormalities on nerve-conduction tests. In contrast, patients with small-fiber neuropathy may have symptoms of pain, burning, and prickling, even without weakness. The nerve-conduction test is only sensitive to damage in the large-fiber nerves. and does not detect abnormalities in the smallest-caliber nerves.

At Johns Hopkins we obtain skin biopsies when patients with symptoms of small-fiber neuropathy have normal nerve-conduction tests. The skin biopsy allows the clinician to assess damage to the small sensory nerve fibers that innervate the skin, an excellent marker of a small sensory fiber neuropathy, common in Sjogren’s patients.

2. The lack of any definitive blood tests

Sjögren’s syndrome is an example of an autoimmune syndrome. In autoimmune disorders, the immune system, which normally protects the body from infection and cancers, may cause injury to the body’s own tissues. In addition to the nervous system, organs which may be targeted in Sjögren’s syndrome include the eye, the lung, the heart, the kidney, and the joints. Many patients with Sjögren’s syndrome have autoantibodies, which bind to the body’s organ tissue and cells. Some examples of autoantibodies in Sjögren’s syndrome include anti-Ro (or SS-A antibodies) and anti-La (or SS-B antibodies).

However, more than 50% of patients with neurological manifestations of Sjögren’s may not have autoantibodies. In patients who have neuropathy and compelling glandular symptoms of dry eyes and dry mouth, negative blood tests for SS-A and SS-B antibodies do not exclude the diagnosis of Sjögren’s syndrome. In the context of sicca symptoms, further diagnostic studies are warranted, including a Schirmer’s test, and a minor salivary gland biopsy.

What are other types of neuropathy which can occur in Sjgoren’s syndrome?

1. Autonomic neuropathy

Sjögren’s syndrome can cause nerve damage which regulates the coordination of heartbeat, respiration, and gastric motility. This is called an “autonomic neuropathy. Examples of symptoms include lightheadedness when standing, decreased or increased sweating, and feeling full despite eating small meals. The diagnosis of autonomic neuropathy should be made by a neuromuscular specialist.

2. Trigeminal neuralgia and glossopharyngeal neuralgia

Sjögren’s syndrome can cause numbness or burning of the face, called “trigeminal neuralgia.” Pain in the back of the throat, which may worsen while swallowing, is called “glossopharyngeal neuralgia.” Patients with trigeminal or glossopharyngeal neuralgia can have agonizing mouth and facial pain. These neuropathies may co-exist with other neuropathies in different parts of the body. For example, up to 20% of patients with a “small-fiber” neuropathy may also have trigeminal neuropathy.

Medicines which may help alleviate symptoms in small-fiber neuropathy may also have efficacy in trigeminal neuralgia. Such medications may include a class of agents which are typically used to treat seizures, and include gabapentin, topiramate, andpregabalin. In seizure disorders, paroxysmal and irregular bursts of electrical activity in brain nerves may lead to propagation of seizures. Similarly, in Sjögren’s neuropathy, irritative electrical signals produced by nerves in the skin instead of the brain, may similarly contribute to pain. Just as anti-seizure medicines can dampen electrical activity of brain cells, the dampening of electrical activity produced by pain-fibers may ameliorate burning pain. It is important to note that use of these symptomatic medications does not target the neuron-inflammation which may be contributing to neuropathy. In such cases, judicious use of immunosuppressant medications should be considered.

3. Mononeuritis multiplex

More severe patterns of weakness or clumsiness may cause weakness or paralysis of different muscles, and is called “mononeuritis multiplex”. These more cataclysmic episodes of numbness or weakness necessitate a thorough diagnostic evaluation, both by nerve-conduction tests, and often by biopsy of nerve and/or muscles. Mononeuritis multiplex occurs when there is inflammation of small blood-vessels. The muscles and nerves nourished by such blood vessels may be deprived of oxygen and nutrients, and is similar to a “stroke of the nervous system.” In such cases, ameliorating symptoms of pain is not sufficient – immunosuppressant therapy is always warranted in cases of mononeuritis multiplex.

The pace of recovery from mononeuritis multiplex can be frustratingly slow. In some cases, it may be difficult to determine, whether a slow pace of recovery is due to ongoing and ineffectively treated inflammation, or is just a manifestation of the slow process of healing and “rewiring.” In such cases, repeat nerve-conduction tests may be important. Immunosuppresant medications which may be used in the pattern of mononeuritis multiplex includes cyclophosphamide, azathioprine, as well as prednisone.

How is the neuropathy of Sjögren’s treated?

In general, a neurologist and/or rheumatologist must determine the “pattern” of neuropathy (i.e. mononeuritis multiplex versus “small-fiber neuropathy). Distinguishing between these patterns is of paramount importance, because of distinguishing mechanisms which may necessitate different therapeutic strategies. The pain of neuropathy can be especially severe and may require different analgesics and anti-seizure medications. However, symptomatic treatment of pain should not preclude the institution of medications to dampen the immune-system, when there is evidence of ongoing neuroinflammation.

CNS or Central Nervous System complications of Sjogrnen’s syndrome


Patients with Sjögren’s syndrome may have “myelitis,” which is inflammation of the spinal cord. Myelitis can cause weakness, numbness, and difficulty with urination and/or defacation. Myelitis can present quickly (i.e. within hours). However, symptoms due to inflammation of the spinal cord may evolve more slowly, progressing over weeks or months. This slower progression may be difficult to distinguish from Multiple Sclerosis (MS). Unfortunately, patients with myelitis and Sjögren’s syndrome can be misdiagnosed with MS. Appropriate tests, which may include spinal tap and MRI of the brain/spinal cord, can lead to diagnostic clarity. The importance of accurately distinguishing between Multiple Sclerosis and Sjögren’s syndrome is of paramount importance. MS and Sjögren’s have completely different treatments. The approved treatments for MS are ineffective for Sjögren’s syndrome, and may actually lead to “flares” or worsening of Sjögren’s syndrome.

Patients with Sjögren’s syndrome may have another autoimmune disorder called “Devic’s syndrome,” or “Neuromyelitis Optica.” Neuromyelitis Optica (NMO) causes inflammation of the nerves connecting the eye to the brain, or “optic neuritis,” as well as myelitis. The pattern of myelitis which can occur in Neuromyelitis Optica is much different than Multiple Sclerosis. Typically, the myelitis in Neuromyelitis Optica is more severe, causing severe weakness, and may cause future relapses.

Again, the treatment for Neuromyelitis Optica is much different than MS. Patients with Sjögren’s syndrome, who are diagnosed with MS, need to be skeptical about receiving these dual diagnoses. Below, I offer some helpful hints, which may especially cast doubt on the diagnosis of MS.

Red flags for a diagnosis of Neuromyelitis Optica

Answering “yes” to the below questions should especially raise consideration for the diagnosis of Neuromyelitis Optica.

(1) Have episodes of myelitis been especially severe. (i.e. associated with inability to lift the arms or legs in the air)?

(2) Have there been multiple relapses?

(3) Have episodes of myelitis been associated with “optic neuritis,” or inflammation of the nerves connecting the eye to the brain?

(4) Have MRIs of the spine shown inflammation which extends beyond three “back bones” or vertebral bodies?

Any patient with Sjögren’s syndrome, a history of myelitis, and answering “Yes” to the above questions should have a blood test which may assist in the diagnosis of Neuromyelitis Optica. The name of this blood test is the NMO-IgG antibody, and is performed at the Mayo Clinic. It detects Neuromyelitis Optica in 70 percent of cases. This means that it is not a perfect blood test and will be negative in 30 percent of cases. In such cases, consultation with a neurologist with training in neuroimmunological disease is crucial.

Red flags against a diagnosis of Primary-Progressive Multiple Sclerosis

Multiple Sclerosis is not a single disease, but has different presentations, with different tempos. The most common type of MS is called “relapsing-remitting” MS, and is punctuated by episodes of unequivocal deterioration (called “flares”), versus periods of clear improvement and quiescent disease. However, a different type of MS may be confused with Sjögren’s syndrome. This pattern is called “primary-progressive” MS. In such cases, the crescendos of worsening and improvement typical of “relapsing-remitting” MS are not evident. Instead, there may be a slower and more gradual period of deterioration, reflecting inflammation and damage in the spine (i.e. progressive myelitis).

Patients with Sjögren’s syndrome who receive a dual diagnosis of primary-progressive MS need to be especially vigilant about diagnostic misimpression. Specifically, there is no effective treatment for primary-progressive MS. Any patient with Sjögren’s who receives a diagnosis of primary-progressive MS deserves a trial of immunosuppressant medication which may be helpful if progressive myelitis is occurring because of Sjögren’s syndrome.

It is often difficult to distinguish between primary-progressive MS and Sjögren’s disease. Patients with Sjögren’s syndrome may have less brain disease on MRI compared to patients with primary-progressive MS. In addition, patients with Sjögren’s syndrome may have lesser amounts of protein in the spinal fluid, called “oligoclonal” bands. Therefore, any Sjögren’s patients with a diagnosis of primary-progressive MS needs to have brain MRIs, as well as a spinal tap.


The most common CNS complications of Sjögren’s syndrome include myelitis and optic neuritis, which are syndromes that can occur in MS. Because of this symptomatic overlap, patients with Sjögren’s syndrome may erroneously receive a diagnosis of MS. Because the treatments for MS are not only ineffective for Sjögren’s syndrome, but may actually precipitate flares of Sjögren’s disease, accurate distinction between MS and Sjögren’s syndrome is crucial. When the myelitis is particularly severe, associated with optic neuritis, or involves extensive regions of the spine, then the diagnosis of Neuromyelitis Optica should be considered. Spinal taps and brain MRIs may help in the distinction between primary-progressive MS and Sjögren’s syndrome. All patients with myelitis in the context of Sjögren’s syndrome deserve a trial of immunosuppressant therapy.

The Road Leading to Sjogren's

They say on average it can take 6 years to be diagnosed with Sjogren's Syndrome.  For me it was longer. I believe it all started in 2003 when I was hospitalized with septic shock.  The doctor's were fascinated with my case because there was no medical reason they could find for this to have happened to me.  It was very sudden, with me being admitted with dangerously low blood pressure at 27/13, severe dehydration and a subtle, slow heartbeat.  The day before I had seen my family doctor complaining of a sore throat, fever and body aches.  They told me I had bronchitis, which I thought was odd since I had no cough, and gave me antibiotics.  I went home to rest and woke the next morning having a hard time thinking clearly and burning up with a high fever. I was later told I was so badly dehydrated that I had started to become delirious.  Although it was a terribly frightening experience for my mother, I was so out of it that most of what I am writing here comes from her account, not my own.  I do remember being given dopamine twice to increase my heart rate.  And I remember waking up the next day, September 11, in the ICU with the infectious disease doctor telling me that I had almost died. He said my overall health and youth was what saved me.  That and 5 of the world's strongest known antibiotics.

Life went on but I was never quite the same health wise and I seemed to get sick quite often.  My family doctor thought my immune system might be compromised and sent me to many specialists over the years.  No one found anything.  Yet I continued to have odd, some times short-lived, health issues.  Swollen glands that lasted for 2 days and never returned.  Sudden acid reflux so painful I went to the ER. A tremendous drop in my thyroid levels that prompted a trip to an endocrinologist who increased my synthroid (I'd been diagnosed with hypothyroidism in 1997) by almost 100 mg. Small cuts and scrapes that wouldn't heal quickly and left scares.  Unknown and untreatable rashes on my face, neck and scalp.  Swollen, painful fingers.  Carpel tunnel in both wrists.  White blood cell count so low that I was sent to a hematologist oncologist; she diagnosed me with severe anemia and an iron deficiency, requiring me to take a prescription-strength prenatal vitamin daily and receive monthly B12 shots.  Skin infections that turned into staph infections; twice tested for MRSA, both times with negative results.  Tingly, pins-and-needles-type feelings in my hands and feet, eventually turning to numbness and increasingly painful icy-cold burning sensations.  Increased then decreased sweating. Bouts of dizziness and feelings of being light headed, occasionally resulting in my passing out or falling down.  Hospitalized yet again, this time for severely low potassium levels that left me temporarily paralyzed and in the ER (again) getting a spinal tap.  More specialists who discover that my body is not retaining potassium, regardless of the 8 potassium pills I take each day. My eyes began getting blurry and dry causing difficulties reading.  Teeth, that although I brushed often, began to crack, break and even decay.  A wicked dry mouth that I'd been living with so long I didn't even realize it.  Then this past summer I began having terrible pain in my left leg that I thought was my sciatica acting up (I'd had problems with it ever since I was 8 months pregnant and my son was pressing down on the sciatic nerve).  But despite the usual tricks it didn't get any better, in fact, it got worse.  By the time I ended up hospitalized again, I was limping. 

The Tuesday before Thanksgiving I had terrible diarrhea.  No other symptoms at all, just diarrhea.  Despite eating a liquid diet, then eating nothing, it continued.  I spent Thanksgiving day sleeping on the couch or sitting on the toilet.  By the following Monday I knew all the Gatorade in the world wasn't going to keep me from getting dehydrated.  Plus I felt the tell-tale signs of muscle aching in my upper thighs; a sure sign that my potassium levels were getting low.  I called my doctor, anticipating what she would say, which was to go to the ER.  Sure enough their initial blood work showed my potassium level as 2.2 with the average healthy level being 3.5-5.0.  I was admitted after 9 hours in the ER.  I spent 11 days in the hospital.  While I was there the admitting doctor brilliantly called for a kidney consult as he was so concerned about my potassium levels.  That is when my life was forever changed.

My kidney doctor is a fabulous man whom I admire and respect greatly.  I will forever be grateful to him for being the one who finally found out what was going on with my body and my health.  After many discussions and tests I was diagnosed with Distal RTA, which is Type 1 of Renal Tubular Acidosis, and Sjogren's Syndrome.  I know I also have Peripheral Neuropathy but have not yet found a Rheumotagist to oversee the care and treatment of my Sjogren's.  The Distal RTA my kidney doctor will continue to treat as this deals with my kidneys.  He also has a dietitian in his office who I will be seeing to help me re-learn the healthy way to eat. 

As I type this I have been home from that hospital stay for only a week and I am on new medications; one that appears to be helping and one that is too soon to tell.  I'm educating myself about these illnesses by reading everything I can and talking to other's with the same, or similar, disorders.  When I was in the hospital I was getting physical therapy for my left leg and now have a walker.  Some days I can walk without any problem, at least for a bit.  Other days I limp and some days I do use the walker.  Hopefully the auto-immune suppressant I am on will help with this. 

For me this has been a spiritual wake-up call.  I was not caring for my body, mind or soul the way that I should be; the way that I deserve to be.  In some ways this diagnosis has been a blessing.  I now know I wasn't just lazy, depressed or crazy.  There wasn't anything wrong with me.  I now have tools to manage all those very real health issues I struggled with daily.  I can hold my head high and say that I have an invisible illness, the illness does not have me.


What is Sjogren's Syndrome?

Sjogren's Syndrome (SS) is a chronic autoimmune disorder in which the white blood cells attack the moisture-producing glands. Nine out of ten patients are women and there are more than 4 millions people living with this in the United States.  Because SS mimics other diseases it can take an average of 7 years to be properly diagnosed.  Sjogren's can occur alone or with another autoimmune connective tissue disease illness such as Lupus or Rheumatoid Arthritis.  Since being diagnosed I have discovered 3 people I know who also have this. And last summer Venus Williams made headlines when she backed out of Wimbledon due to her own diagnosis with Sjogren's Syndrome.

Sjogren's Syndrome is a systematic disease that affects the entire body.  According to the Jerome L. Greene Sjogren’s Syndrome Center at John Hopkins, "Sjogren's defining clinical features, dryness of the eyes and mouth, arise from an autoimmune process affecting the lacrimal and salivary glands.  Sjögren’s syndrome  is one of the most prevalent systemic rheumatic diseases.  The disease may affect the nervous system, lungs, and kidneys in addition to the exocrine glands. Chronic fatigue, joint pain, and neuropathic pain are significant sources of disability. Late complications may include blindness, dental destruction, oral candidiasis, and non-Hodgkin lymphoma."

The following illustration and list of symptoms was taken directly from the Sjogren's Syndrome Foundation website.

Sjögren's is a systemic disease, and its symptoms are felt throughout the entire body.

Sjogren's body symptoms
Symptoms vary from person to person but may include:
  • a dry, gritty or burning sensation in the eyes
  • dry mouth
  • difficulty talking, chewing or swallowing
  • a sore or cracked tongue
  • dry or burning throat
  • dry or peeling lips
  • a change in taste or smell
  • increased dental decay
  • joint pain
  • vaginal and skin dryness
  • digestive problems
  • dry nose
  • fatigue

Sjögren's is a systemic disease, and its symptoms are felt throughout the entire body.

Sjogren's body symptoms
Symptoms vary from person to person but may include:
  • a dry, gritty or burning sensation in the eyes
  • dry mouth
  • difficulty talking, chewing or swallowing
  • a sore or cracked tongue
  • dry or burning throat
  • dry or peeling lips
  • a change in taste or smell
  • increased dental decay
  • joint pain
  • vaginal and skin dryness
  • digestive problems
  • dry nose
  • fatigue

Sjögren's is a systemic disease, and its symptoms are felt throughout the entire body.

Sjogren's body symptoms
Symptoms vary from person to person but may include:
  • a dry, gritty or burning sensation in the eyes
  • dry mouth
  • difficulty talking, chewing or swallowing
  • a sore or cracked tongue
  • dry or burning throat
  • dry or peeling lips
  • a change in taste or smell
  • increased dental decay
  • joint pain
  • vaginal and skin dryness
  • digestive problems
  • dry nose
  • fatigue

What is RTA?

RTA stands for Renal Tubular Acidosis and according to the National Kidney & Urologic Diseases Clearinghouse it is “a disease that occurs when the kidneys fail to excrete acids into the urine, which causes a person’s blood to remain too acidic.”  Chronic acidity occurs without proper treatment and can lead to bone disease, kidney stones, growth retardation and chronic kidney disease.  It is believed that this was the ailment Tiny Tim had in the classic Charles Dicken’s tale, A Christmas Carol.  There are 4 types of RTA and my doctor believes I have  Type 1 which is also called Distal RTA.

Basically what this means is that my kidney is holding on to the bad stuff, the acids, and getting rid of the good stuff like potassium & magnesium.  This is the opposite of what your kidney should be doing.  As a result my blood had become overly acidic and although my body had tried to compensate, the high acidic levels in my blood were starting to affect my organs.  Thus the bowel problems that caused the diarrhea that led to this discovery.  My doctor told me that the acidic blood was attacking my bones and even causing me to hyperventilate (which is why I would occasionally take random gasps for breath on a reflex).

But let me back up a few years to when this really started.  In March of 2009 I woke up one day partially paralyzed because my body has lost almost all of its potassium.  Of course we had no idea that was the case until after spending a few hours in the ER and getting multiple tests done (including a spinal tap). Since potassium is needed for your muscles to function properly, I was unable to move most of my muscles.  When I was admitted to the ER my potassium levels were a 1.0 and the normal range is 3.5-5.0.  Although I saw multiple specialists after that episode, no one could figure out why my body was not retaining potassium.  Since our bodies do not make potassium and since I was losing potassium, I was prescribed 60-80 meq of potassium chlor-con daily.  I also had to alter my diet to low sodium and high fiber and cut out Coca-Cola (Coca Cola absorbs the potassium in our bodies).  

So for the last 2 years I lived this way with occasional bouts of muscle pain that I chalked up to too much sodium in whatever I had eaten recently (there is sooo much sodium in sooo many things!).  And then the Tuesday before Thanksgiving I began having terrible diarrhea with no other symptoms.  As the days progressed it became harder for me to hold anything down, even simple liquids like chicken broth or water.  By Monday I was starting to feel some loss of muscle in my legs and knew that despite guzzling Gatorade and continuing to take my potassium supplement, I was becoming dehydrated.  We went to the ER once again.  When they checked my potassium levels they were at 2.2 and my blood pressure was 85/43.  Definitely dehydrated.  They admitted me and put me on a heart monitor as our heart is our strongest muscle and with severely low potassium levels your heart can stop. I was given a saline and sugar IV and potassium drip, kept on a liquid diet, and had a lot of blood drawn for the next 9 days.  During this time the admitting doctor called for a consult with the kidney doctor at the hospital; enter my hero.  The nephrologist was the one who caught the RTA and Sjogren’s Syndrome. 

Yes, Sjogren’s Syndrome.  That’s the next part of this story as I have that also.  I believe the RTA was caused by the Sjogren’s.  See my next post for more on this invisible illness.

On an interesting note, my test was sent to the Mayo Clinic and because RTA is so rare even they could not run the test; they sent it to somewhere in New York.  My doctor told me I was a very unique girl.  Hmph.  I coulda told you that!