Is it Lupus, Sjogren’s Syndrome or what?

In my About introduction, I mentioned that I have Lupus and Sjogren’s Syndrome. And then I followed that statement with “[I think]”.

I hedged that statement a bit due to the complexity of diagnosing a plethora of symptoms.

I had my first major flare-up in the summer of 1999. I was living in San Francisco at the time and it was an unusually hot day in the upper 80’s.

I took my dog for a long walk wearing shorts, a t-shirt,  flip flops, and sunglasses. I wasn’t wearing a hat nor was I wearing any type of sun block.

We were about a mile from my apartment and I suddenly got very dizzy (vertigo) and I thought that I was going to faint. I didn’t but that dizziness lasted for about a minute.

We immediately made a u-turn and went home.

Over the next few days I started getting worse. The dizziness came back but not to the point of feeling like I was going to faint. My coordination both in walking and trying to use my hands and arms became unsteady, so I immediately went to see my primary care physician at Kaiser Permanente.

He suspected an ear infection and I think he gave me some antibiotics but I don’t remember.

A few days later I was getting worse and I went back to see him. I mentioned that Multiple Sclerosis (MS) runs in my family and we both thought that the symptoms might be MS related so he put in a referral for me to see a neurologist.

That was June of 1999. I finally saw the neurologist about six weeks later. In the interim, I kept getting worse to the point of needing to use a cane to walk.

By the time that I saw the neurologist, the symptoms had diminshed substantially but he did order an MRI of the brain. A few days after the MRI, I got a call to come back for another MRI. When I went in for that one, the technician told me that they were having problems with the equipment. [red flag alert]

Around 8:00 p.m. on the night of the second MRI I got a call from the neurologist telling me that I had two small ruptured discs in my neck and I needed immediate surgery or I might become quadraplegic! Yikes!

Prior to that call I was pretty sure that I did have MS because the symptoms reminded me of what my aunt and cousin went through. Therefore I was relieved that it was something else. [red flag alert]

A few days later I had a double discectomy by a very good neurosurgeon at the Kaiser Permanente hospital in Palo Alto. He told me that I’d be fine in a few months after recovering from the surgery, and that I could return to my usual sports activities of skiing, running, roller blading, etc.

He was right! The surgery was in the first week of August of 1999 and by October I felt good as new!

In November my right side became weak and ocassionally I would need to get that cane out of the closet. [red flag alert]

The following May of 2000, I had a second flare-up and a second neck surgery a month later. [red flag alert]

[Fast forward]

Subsequent to my second flare-up, I’ve received a variety of diagnoses for my symptoms from Fibromyalgia to Conversion Disorder, but one diagnosis that made sense stuck, Multiple Sclerosis (MS).

Over the last sixteen years, I have seen close to two dozen neurologists and five of those neurologists specialized in MS. Four of the five specialists said that I had MS and the others said “no, you do not.” [red flag alert]

The naysayers offered no alternative diagnosis other than Conversion Disorder or residual effects from the neck surgery in 1999.

Furthermore, none of the naysayers ever suspected that I might be dealing with “The Great Imitator” also called Lupus nor did they refer me to a rheumatologist for an evaluation. [red flag alert]

This very long post with the introduction to my healthcare saga is posted in Patient Advocate 101.

What I left out above is that as a scientist, I did conduct a thorough research on Multiple Sclerosis (MS) mimics very early on in the course of my ill health since none of the neurologists travelled that path.

However, I really screwed up! [red flag alert]

Somehow I missed the sentence or paragraph that mentions Lupus can put someone in a wheelchair; I have a wheelchair and a few other tools to aid in mobility when needed.

In an era when there are too few doctors for too many people, and the protocol is to spend no more than twenty (20) minutes with a patient, it is somewhat challenging to problem solve a complex illness.

Consequently, when a person may be dealing with a serious health issue that is not easily diagnosable, they need to become their own Patient Advocate, and definitely get a second and third opinion when they do get a formal diagnosis.

In the subsequent posts, I will share the tools and the methods that I have used to be my own Patient Advocate.

[To be continued…]