This was posted on the Sjogren's forum today. I truly hope it is a legitimate post. I'm posting it here in the event someone such as myself is looking for a place to get help when affected neurologically by Sjogren's.

"julius
Newbie

Posts: 3


Clinic at Johns Hopkins devoted to neurological complications of Sjogren's
« on: Today at 03:58:03 PM »

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Hi, everyone: Just joined the Sjogren's World Community Forum. Let me introduce myself. My name is Dr. Birnbaum----I have trained in both Rheumatology/Internal Medicine as well as Rheumatology. I work at Johns Hopkins University---this year at Johns Hopkins University, under the aegis of the Transverse Myelitis Center, I have started a Clinic devoted towards care of patients with neurological manifestaions of rheumatic disease. Although I had anticipated that the bulk of my patients would have lupus, we are seeing a wide spectrum of patients with neurological complications of Sjogren's disease. TPatients with neurologic complications of Sjogren's are often marginalized and dismissed by the medical profession, due to general unfamiliarity with the types of unique neurological challenges faced by patients with Sjogren's. Conditions which we manage include complaints of burning feet, problems with "autonomic nervous system", vasculitis, muscle problems. We especially focus on patients who are often misdiagnosed with multiple sclerosis, who may have inflammation affecting the spinal cord and the nerves connecting the eye and the brain.

I would like to also extend an invitation to anyone on this Website, if they have known or suspected neurological complications of Sjogren's, and live in the vicinity of Hopkins and/or Baltimore, that we would be happy to try and evaluate at this Clinic. This would include patients with similar "small-fiber neuropathies", other nerve problems, patients with spinal cord disease, etc. For further information on this Clinic, you can google the Johns Hopkins Web Site, and click on my name Dr. Birnbaum. Because of my training in both Rheumatology and Neurology, we are equipped to manage symptoms which straddle both discplines. This simplifies the diagnostic process for patients---instead of having to bounce and receive sometimes discrepant opinions between neurologists and rheumatologists, we are able to fashion a single, unified, and comprehensive diagnostic and treatment plan. Best, Dr. Birnbaum "





Billye

http://www.hopkinsneuro.org/tm/doc.c...ulius_Birnbaum

Interesting... Finally, someone taking an interest in these complex cases... I bet he will be overwhelmed with patients responding...
Cathie

Silverlady,
Thanks for flagging this.
I know I'm interested, and live less than 2 miles from his address.
I just emailed him.
We'll see if I get a response. If not,
I'll try to call him
.
HeyJoe- thanks for the link, I was about to look it up
when I saw your post.
I've bookmarked it.

I agree Cathie but once again I wonder how many people are wondering
around with and can't get the help they need because of lack of good
insurance,now lack of transportation..Bob' that's great,But you have given
us a name and place.Thanks so much,wow makes you feel someone cares.
That's so great Hugs to all Sue

Thanks, I appreciate the post, altho I am limited by insurance....many of us are on PPOs or HMOs....My son just recently was hired by the Feds and I thought his insurance would be great....it isn't...so insurances are stopping people from getting to many of these good treatment centers. They simply refuse to refer you out...even if your doc insists that is the best care....your insurer won't pay.

Just discovered this site and have sent an e-mail to this doctor. I am a 51 year old white male, so I don't fit into the "normal" profile for most autoimmune diseases. Have been working with a Neuro for possible MS, but blood work came back with anti-La/SSB and low levels of ANA. He thinks it is Sjogren's or Lupus. Had first appt. with the Mayo on Friday and toward the end we ask what he is thinking and he asks if we have heard of ALS. He also says he is not taking MS off the list.

I have 8-12 lesions in the frontal subcortical lobe that are either ischemic or demyelating. Neuropsych says significant cognitive decline due to MS or lupus. CSF says elevated proteins and glucose. I cannot walk heel to toe or even stand with my feet together. Pretty bad ataxia. Some tingling in the arms, especially at night.

Two years ago I had my gallbladder out. No gallstones, just wasn't working. I had unsteadiness and tingling in my arms at that time, but it was dismissed. During that work-up it was determined that I have an enlarged spleen.

I do not have the dry eyes or mouth, exept in the morning, so I'm not sure if I fit in with this Sjogren's Syndrome. But, reading on the internet it seems like some people have CNS sypmtoms prior to the dryness.

It seems like all of this started since about 4 years ago when I got West Nile Virus. Not sure, but it seems that way.

Has anyone had experience with the Mayo and do you think they are aware of the unusual presentations of this disease?

I've been to Mayo and I have Sjogren's and the nervous system damage. They diagnosed me with seronegative Sjogren's Syndrome. I also have Rheumatoid Arthritis and a seronegative spondylarthropathy.

If you do a search about Dec. 2006 you will find the results and saga of my trip to Mayo. I'm having serious problems with eyes and hands right now so I can't do the searching for you. I saw Dr. Michelle Mauermann and Dr. Peter J. Dyck. Dr. Mauermann was planning to start a study of Sjogren's from a neurological standpoint.

Billye

I think the chance that I just stumbled upon this page may very well save my life.
At a time where I could not be any more desperate for help, I have found hope, and I feel like I want to cry.
I just turned 20 last month and have been struggling with my health for almost 8 years now. I am so exhausted from the suffering and emotional impact of feeling so entirely alone and helpless I can barely pull myself out of bed to do the simplest things anymore. I have been trying to stay in school partly because I am determined and party because I need to stay in school full time to keep my health insurance, but with one thing after the next coming up, the unexpected hospital visits, and on top of it the chronic consistant pain, I am on the verge of giving up on my life all together and can't help but feel that I am being completely robbed of all opportunity. I have not had the support from my doctors, family, friends, or professors that I need, and despite my greatest efforts am coming to the point where I may just end up being a failure all around. Instead of acknowledging that the symptoms are real and very well related to the autoimmune illness I am treated like I am either making it up or just have to live with it because thats the way it is and they dont have a solution for me. They do not even have a proper diagnosis, just a skin biopsy positive for collagen vascular disease, positive ANA, anti-ro, anti-la, elevated sed-rate and rheumatoid factor, a rheumatoid arthritis diagnosis that was taken back, family history of lupus MS and thyroid disorder, and a whole lot of symptom attribution to fibromayalsia (which from my basic understanding is their complex way of saying they dont have a fricken clue!). Well guess what, I have not been make\ing this stuff up, NOBODY WOULD EVER CHOOSE TO FEEL THIS WAY, I am not being weak and I need help, soon. I am very smart and I do my own research and found something called CIDP which can manifest in people who have sjogrens, which the doctors speculate is going on, and furthermore, this CIDP can also lead to something that causes muscle weakness, burning, and acute pain in the left shoulder, which has been my chief complaint lately. But, will any doctor ever listen to me? Will any doctor ever consider that I am suffering much more than dry eye? I am overwhelmed with joy thinking of the possibility that there is a doctor out there who gets it and how many people who are going through similar things. I do not feel so alone and I have new hope for my future knowing that all the effort into advocating for myself may finally pay off. I am sorry I sound so crazy, I have clearly been loosing my mind.

--doctors think you are making stuff up? Very sad.

Certainly, any of the ANA/vasculitic/connective tissue autoimmunity conditions can cause secondary neruopathies or myopathies, either through direct attack, or compression, or vasculitic insufficiency, or all three.

Take a look at (and bring to your docs!):

http://neuromuscular.wustl.edu/antib...tml#vasculitis