Sjogren's neurological symptoms and Johns Hopkins
 

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

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.

I just have to add this....I would love to go out east, and have them look at my case, as I do and don't have the Sjogren's diagnosis....depending who one talks to.... but, I got a bill for a cytology (pap smear) that my in plan PPO doc sent to an out of plan lab....geez. I imagine they will bite the bill....if not, I will pay it as it isn't much and my primary has been decent and I don't want her wailed on.

Well, after all, I do need to pay for some CEO's margarita in the Cayman Islands. I assume they buy the extra big size, ones that cost $49.50.

This (Sjogren's) is one disease that there has been so much 'debate' over, I wish they would settle it once and for all...the other one has been Lyme Disease, and the hereditary neuropathies, now some places are saying, 'why test, you all end up the same way anyway!!' It is so frustrating! It does matter to those of us with these entities on our ICD-9 coding sheets....for more reasons than billing.

I emailed Dr. Birnbaum early today and plan on seeing him. He has asked that my records be fowarded to him. Fortunately, Johns Hopkins and the other doctor there are on our insurance. He did say that they see patients from all across the country.

One thought that ran through my mind though. Is there anything else new that can be done for Sjogren's, even if it is diagnosed?

I cannot recall all of the details of Billye's visit, but wondered if Mayo Clinic said anything about alternative forms of treatment, or new medications.

It seems to me something was mentioned there about IVIGG's. I did take those, and they definitely helped. After several rounds though, I had a reaction to them and the IV's were discontinued. I would take those again, but would need some means of counteracting the terrible burning caused during the last ones...

Cathie

Cathie
 

Cathie,
Mayo did not give me any alternate treatment at the time I went (over a year ago) I was to go back this year to be re-evaluated. My husband is having back problems and I don't think there will be another visit. But I wonder if the burning you have was not the small fiber sensory neuropathy. It is a hallmark of Sjogren's I believe. And mine burns horribly. I'm in a vat of hot oil from my toes thru my upper back at this point. I desperately need to up my Lyrica and I tried to but it was just too much at one time and I was so loopy. What was worse was knowing I was loopy.

I'm taking methotrexate, 20 mg. Have they ever suggested methotrexate for you for the immune system issues? I know you are taking Prednisone. But my rheumie was considering putting me on steroids with the methotrexate if my sed rate hadn't come down a few months ago.

I wish you luck with this doctor and I'm anxious to see what he has to say.

Billye

What I wonder--
 

--is why so many rheumatologists seem to dismiss the neurological components of Sjogren's, which can include peripheral neuropathy, neuronopathy or ganglioneuropathy (cell damage or death in the dorsal root ganglia, which can certainly lead to sensory burning), and even in some cases white matter central nervous system lesions. There are also certainly reports of autonomic dysfunction, likely related to small-fiber damage--and even myopathy.

It's not as if these manifestations haven't been documented--and apparently this person at Hopkins is aware of them--but too many rheumies seem to look at Sjogren's as only a disruption of fluid producing organs--a solely xerothomic disorder.