CNS Sjogren's or MS?

[Pinky61]

Hello,

Approximately 6 months ago, I had an episode where I had a crop of mouth ulcers, fever, joint and muscle pain, painfully swollen submandibular lymph nodes, and numbness on the right side of my body. I assumed I had some sort of infection. The numbness persisted after the other symptoms went away so I went to a neurologist. I had a MRI that showed a cervical lesion at C3-4 and some in the brain and he diagnosed me as multiple sclerosis even though such an event has only occurred once. I was started on, and still on, Copaxone.

I had a CSF analysis and VEPs a few weeks later that were normal.

I've since been experiencing frequent red eye episodes, joint pains, mouth ulcers, fevers, and various rashes. I recently went to a rheumatologist who thinks I may have Sjogren's because of extreme eye dryness, mouth dryness, and persistantly enlarged cervical and submandibular lymph nodes. I am currently waiting on blood work tests to come back. Lupus is unlikely because my ANA is negative.

I've read that Sjogren's can produce a MS-like syndrome but that it is somewhat controversial. What are your thoughts on this? I absolutely hate the Copaxone and am quite angry at my neurologist for starting me on it after only one event and one MRI. I'd really like to discontinue it if at all possible. Thank you for your time.

[CCF-Neuro-M.D.-PW]

I cannot give you a formal opinion over the internet unfortunately as this site is purely educational

Starting a patient on disease modifying therapy for MS after one episode (or 'clinically isolated syndrome, CIS') is now becoming a more common practise. The diagnosis of MS should be fairly clear though, as treatment is longterm, expensive, and associated with some side effects. To diagnose MS, there should be a minimum workup for other causes, particularly if other signs are present that are atypical for MS ie fever, jont pain.

Other conditions that can cause MS-like (that is, multifocal brain lesions) picture are sjogrens, sarcoid, vasulitis, CADASIL, among a few other rare cuases. If you require a second opinion at an MS Center, the Mellen Center for Multiple Sclerosis at the Cleveland Clinic could help,

Good luck

[MLWTR]

It sounds like you have a rheumatologist who is on the ball. One condition you might also want to ask about is a form of vasculitis (a rheumatological disease) called Behcet's syndrome. Some common symptoms include eye inflammation, mouth ulcers, joint problems, etc., and people can also have CNS involvement. (I don't know about dry mouth, which does sound like Sjogren's.) Behcet's is not super common, so it might not be the first thing a doctor would think of, but I thought it might be worth mentioning. It must be very frustrating to you to have to be on medication for MS without being sure that that is really the diagnosis. Here are a couple of links that explain more about Behcet's, if you are interested:

http://vasculitis.med.jhu.edu/typesof/behcets.html

http://www.niams.nih.gov/hi/topics/behcets/behcets.htm

[Pinky61]

Thanks you for the info. I don't think it's Bechet's because that causes uveitis, which I don't have. My redness is due to dryness. Also, I don't have genital ulcers (and hope I never do!).

I just think there is a big problem with multiple sclerosis being improperly diagnosed. It just infuriates me because neurologists don't acknowledge that other diseases can look like MS. My neuro practically laughed at me when I asked if I should be tested for B12 deficiency and anti-phospholipid syndrome. They should at least make sure the McDonald criteria are met. Because I've been given a MS drug and received that diagnosis, I will never be able to get insurance on my own again. I'm angry and I feel like there should be some consequences for what they've done to me as I certainly will live with them for the rest of my life. Sorry for the ranting, I'm just angry about how I've been treated.

[runaround]

You don't have to have all of the symptoms for it to be Behcets. I was actually thinking the exact same thing and was going to suggest it, and then MLWTR posted before I could! I saw a show on Discovery about a woman who suffered for years without the proper diagnosis, and it was actually her eye doctor who made the connection. I would still pursue this with your rheumatologist. Some of your other symptoms may not even be related and may be another condition althogether.

[KrisKraft]

I know many people with Lyme with those symptoms. The numbness and eye problems are especially common. And it's much better to have Lyme than MS; Lyme patients can get better with the appropriate use of antibiotics.

You can see a comprehensive list of symptoms in peer-reviewed journal articles under "Symptoms and Characteristics (peer-reviewed literature)" on my website:
http://www.openeyepictures.com/underourskin/uos_resources.html

Most Lyme patients find MRIs to be worthless in diagnosis. SPECT scans are more useful because they show perfusion deficits, which are basically white matter areas of your brain not receiving good circulation because of the inflammatory processes going on when Lyme's munching way at your brain.

If you have a positive Lyme test, there's a great research trial going on with SPECT scans at Columbia, run by an excellent neuroLyme researcher, Dr. Brian Fallon.
http://www.columbia-lyme.org/flatp/resstud.html

There is very good neuroLyme symptom info on his site, too. In my opinion, IGenex, which specializes in tick-borne diseases, is the only reliable Lyme lab, because they test for multiple Lyme strains, not just the B31 Shelter Island strain, and they report on the most specific Lyme markers, the 31kDa and 34kDA bands. IGenex has recently passed Cal., NY, and CDC quality testing with flying colors. You can download the IGenex testing forms from my website; give these to your MD if you want to use this lab. MDL isn't bad a bad lab either.
http://www.openeyepictures.com/underourskin/uos_resources.html

Fewer than half the people with Lyme ever see a tick bite or a rash. The longer you have Lyme, the harder it is to get rid of.

I would strongly urge you to run to a Lyme-experienced physician, which you can find by typing in your location to "Flash Discussions", then "Find a Physician" here:
http://www.lymenet.org/

And you can also enter your symptoms under the "Medical Questions" section, and you can see what other people with similar symptoms think.

KrisKraft
http://www.lymediseasefilm.com/

[jcverive]

I've seen lyme disease being suggested for just about any combination of symptoms, but the mouth ulcers don't seem to support such a diagnosis (unless the lyme disease is advanced).  Has a doctor seen these ulcers? If so, what has been said about them?

[Pinky61]

There only physician who has seen the ulcers was my neurologist who I don't trust. I told him about the ulcers, the rashes, and I had a fever of 101 in his office that day. However, he still put down multiple sclerosis as the diagnosis after me telling him this and looking at my normal CSF. He told me I need to stay on the Copaxone. I looked up some background on him and turns out he's a consultant for Teva Neuroscience, the company who makes Copaxone so I think he has some sort of financial interest with me being diagnosed with MS and being on the Copaxone. It took me over a month to see a rheumatologist and by the time I got in, I didn't have any to show her.

[Pinky61]

kriskraft,

Is there anyone on this forum that does not have lyme? I realize that if you've had it or you know someone who has had it, then everything begins to look like lyme. If you give that list of symptoms on that website to people, then 99% of the planet would have lyme disease. Obviously, not everyone has lyme! If it's not lyme disease around here, then it's the fluoroquinolone antibiotics.

[young at heart]

I also have ms.one thing to keep in mind is some times when you have one auto-immune disease you can have two.

A normal lumbar puncture is common in some with ms.remember Multiple Sclerosis means many symptoms.To test for sjorgens they can do a biobsy of the lower lip,plus blood test.

If you have questions about the diagnosis of ms,see a ms specialist to confirm your diagnosis.A second opinion is always best.

Goodluck to you

[who_is_this]

You sound like me!  There are 3 or 4 pet diagnoses floating around here.  Lyme irks me the most, b/c its proponents are so vocal that every symptom known to man is the result of undiagnosed Lyme.

How convenient to have a disease that can't be proven by conventional lab tests.  The antibiotic guy isn't as vocal as the Lyme people with his pet diagnosis.

[JCmcc]

the neurologist should have mentioned that LD can cause MS plaques. This is completely accepted in the medical community.

I have culture proven LD. Look at my MRI, how similar it is to MS.

BRAIN:
Multiple round to ovoid foci of increased T2 weighted signal in the periventricular and deep white matter of both cerebral hemispheres, as well as within the left middle cerebellar peduncle and corpus callosum. Several lesions appear to enhance after IV contrast. Findings are non-specific, but are suspicious for MS plaques. Other etiologies, such as Vasculitis or Lyme disease, could produce similar findings. Clinical correlation advised.

C-SPINE:
Extensive areas of hyperintense signal abnormality within the cervical spinal cord, most consistent with a demyelinating process. No enhancement was demonstrated. Please see report from MRI of the brain.

I am serious, check it out. See a LLMD.

[KrisKraft]

Why is Lyme testing flawed?

Step 1 test (ELISA) is only 65% sensitive (screening tests should be at least 95% sensitive)

Step 1 & 2 tests detect antibodies and Lyme suppresses human antibody production.

CDC doesn’t test for most definitive Lyme antibodies (31kDa & 34kDa); they were used in the vaccine that was later pulled from the market.

CDC’s recommended tests only test for one of 300 Borrelia burgdorferi (Bb) strains.

But please don't take my word for it; read these recent journal articles:

The Lancet
"In the October 2005 issue of The Lancet Infectious Diseases, Roxanne Nelson
reported(1) about the unreliability of standard testing for Lyme disease.
Paul Mead, an epidemiologist at the US Centers for Disease Control and
Prevention (CDC, Atlanta, GA, USA), expressed concern about newer Lyme
disease assays "whose accuracy and clinical usefulness has not been
adequately established". Mead seems unconcerned that the CDC's reporting
methods miss more than 90% of Lyme cases.(2,3)"
http://www.lymediseaseaction.org.uk/news/lancet_mar06_01.htm

The Journal of Clinical Microbiology (read the full text)
Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease
By analyzing the full text data, you see that the CDC 2-tiered testing procedure misses 75% of proven positive Lyme cases.
http://jcm.asm.org/cgi/content/abstract/43/10/5080