Newly Diagnosed With Questions - Unusual Parkinsonian Presentation

Hi everyone,

I'm a 29 year old female, recently diagnosed with Lupus after nearly a year of making the rounds from specialist to specialist. To make a very long, frustrating story short:


Since August I've had rigidity in my muscles - all of them - that a few doctors have described as mild "cogwheel" rigidity. When I move a hand, a finger, a foot...there is a visible rachet-like, "chink-chink-chink" motion that occurs if I move the muscle slowly on my own. If a doctor moves the muscle and I relax, there is no rigidity. If I move a finger, it will twitch for a few seconds until settling still. Most muscle movement in the larger muscles of the arm or thigh causes immediate painless spasms.

This issue, along with hair loss and burning, twitching muscles, is what led me on the path to seek a diagnosis. My original PC dismissed my concerns and thought it was just anxiety (hahahaha). One ER doc thought I had early onset Parkinson's (this was debunked by the neurologists). My current PC took me very seriously and sent me to all the specialists to start narrowing things down.

The first rheumatologist I visited listened very intently to my symptoms and reviewed blood tests by other specialists. He told me he suspected "mild" Lupus (but wouldn't know for sure until the blood tests came back), and said that Lupus can occasionally present with Parkinsonian-like symptoms. He gave me Prednisone, had blood drawn for more specific testing, told me not to worry and that my Lupus was mild, and asked that I come back in 3 months for a followup. He gave me some information on Lupus, and I've since devoured many books over the disease in an attempt to gather as much information as possible.

However, a week of Prednisone did nothing for the pain or rigidity, sent my anxiety levels through the roof, and I spent a week in the psych. ward at the hospital.

Hubby called the Rheumatologist's office back - told them I was deteriorating (mentally and physically), and demanded an apt. ASAP.

I was seen the following week by another Rheumatologist who ignored me completely and directed all questions to my husband. He read through the blood tests with another doctor in medical-jargon, did a painful fibromyalgia test (despite previous fibro tests being remarkably negative by other doctors) muttered, "Mild Lupus. Fibro." and edged out the door. No explanation to how he came to that conclusion, no discussion of my treatment options or future outlook with the disease, no discussion of the medication I was to take or its possible side-effects. Nothing. The only information I got out of him was to take Plaquenil, a baby Aspirin because I apparently have antiphospholipid syndrome, to see my regular Rheumatologist in three months, and to stop asking questions because he had other patients to attend to.

Thanks to my PC doctor, I finally received a copy of the first round of blood tests from the initial visit to the first rheumy because I wanted to see for myself what the numbers were, as the second rheum. couldn't be bothered to explain anything to me. However, I'm not a doctor so I can't make heads or tails of what any of the numbers mean. There are no "norm" range values listed, so I've nothing to compare the numbers to. All I know is that he said "mild". So I'm pretty much in the dark until I see the "good" rheumy again.


Alright. My questions:

1. Does ANYONE here have muscle rigidity? I understand that Lupus can have a myriad of symptoms, but I've not met or even heard of Lupus presenting with this as a symptom. I don't have painful joints, only rigid, sometimes painful, burning muscles.

2. Does anyone get "spark-like" electric pain in their feet when lower leg or feet are rubbed? I don't know if this is a condition of Lupus, or some other neurological thing that should be checked out. It was not present when I had the EMG.

3. Does anyone also have costochondritis, and if so, what is it like for you?

4. Do any of you have Fibromyalgia? Does the muscle rigidity seem to fit more in the Fibro category than Lupus?

5. What exactly does "mild" Lupus mean? Is this based on the blood tests, or that my organs seem to be fine? Can "mild" turn to "severe"? Or does it generally stay mild?



Thanks so much for your help. I feel very much alone in this, and it is good to know that there are others out there who understand and can relate having this disease.




J-


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Summary of specialists, meds, and current symptoms:

Specialists seen: 3 Neurologists, Cardiologist, Endocrinologist, 3 Rheumatologists

Exams: EKG, Heart Echo, MRI of brain, EMG, nearly every blood test on the planet

Current medications: 200mg Plaquenil, 81mg baby Aspirin, Xanax as needed

Current diet: Mostly whole foods to decrease inflammation - experimenting with cutting out gluten, corn, anything corn derived, and most sugar

Hi Ginny,

Thanks for your reply!

I have had many MRIs done of the brain - the most recent being in November, and all have been normal. I've asked about MS being a possibility as well - but all of my doctors seem to dismiss this as a possibility. Perhaps I should push for an MRI of the spine? I refuse to get a lumbar puncture though - unless absolutely necessary.

Are your muscle spasms and the spark pain due to the Fibro? I wish I could separate what issue is causing what symptom in my body. It is so frustrating!

My vision has gone downhill this past year. I saw an opthamologist just after the Lupus diagnosis, and now have a stronger pair of glasses after having the same vision for years. However, I went back a few weeks ago and my vision was already worse! He didn't see any sign of inflammation, so...who knows.

What tests can the doctors do to test for MS? Besides a lumbar puncture and MRI of the brain and spine? I'm curious what others might be out there. I will certainly ask the rheum. about it at our next appointment.


Thanks for your help!

Hi Mochabean!

I'm sorry to hear about the awful treatment you have received.

Have you ever heard of Stiff Person Syndrome (SPS)? You said that you were hospitalized with anxiety and they stiffness and pain in your feet sound really similar to what I experience. I also have Fibro and am being tested for MS (Find out Thursday)

I don't have the "cog like" movements that you discribed, I moved more like Frankenstine. I have muscle spasams that are more annoying than painful (although some of them can be very painful) I can not tolerate loud noises, fast movements and definitely nothing that happens suddenly. My whole body seizes up like someone hit my power switch mid stride, or milder "distractions" cause more muscle spasams.  Before being diagnosed with SPS my intollerance to all things loud, fast and sudden was interpreted as anxiety.

It is very rare, some don't even take it seriously but I thought I would at least bring it to your attention and you could read up on it.