Hey everyone,
Just wanting some feedback on those of you who have traveled long distance to see him at Johns Hopkins or e-mailed him. I know he can't diagnose via e-mail, but will he respond to your list of concerns and give advice?
We live in Colorado, and I am about at that point that I am willing to travel for someone who isn't calling all my neuro symptoms "anxiety." I have a well-respected neuro at a MDA teaching hospital who I have seen 3 times and had one EMG. She says, relax...you aren't showing any signs of a neuromuscular disease on your tests. But I do have confirmed sural nerve PN in both legs, muscle twitching galore, tongue numbness and tingling and spasms, numbness around my lips, a weird feeling in my throat like someone is squeezing my neck, a past positive anticardiolipin antibody test, low elevated ANA and sed rate (although these have been negative for a while since I've been on Plaquenil.) I've been seroneg for Ro/La but have a positive Shrimer's and drier mouth than before, esp. at night. Also family hx. of Sjogrens and RA.
My mom passed away in late May from brain cancer, and although these last 6 mo. have been very stressful and sad for me, I can't help but feel insulted that my doctors are trying to pin this new stuff on depression/anxiety. I even went with it for awhile and am doing counseling and meds for that, but you just get to the point that you know your body and know something is up.
He's exactly the kind of Neuro that I need and can't find here :( I wonder if he gives referrals, he must know Neuros around the country that specialize in secondary Neuro problems with rheumatic diseases. I wonder if that would not be proper to email for a referral? I'm so desperate at this point.
JenJen
I am so sorry to hear of your loss and I know what you are going through. My mom passed away Dec. 21 and then my dad on May 23 of this year. We barely had time to grieve for mom and now both of them. I am having a hard time with t also and just starting to see some relief from a BAD flare. Sometimes life doesn't seem fair.
Cricket
JenJen,
Hi. I emailed Dr. Birnbaum last week and I heard back from him within about 40 minutes. He only replied that he would look at the reports my doctor was faxing and get back to me in regards to an evaluation. I live in PA so it is not too far for me. If I get a reply from him, I will Post again and let everyone know the outcome.
I am sorry about your Mom and wish you comfort and peace,
deb
Deb (and Jen also),
I have the privilege to say Dr. Birnbaum is my physician...for the last year and a half. I was referred to him for the antiphospholipid syndrome and he spent three hours with me going over my extensive history. He finally diagnosed my SJS after schirmmer test and lip biopsy. If you get the opportunity to see him...take it. I have been to the Mayo Clinic in Rochester as well as UT Southwest Med. Center in Dallas (I was living in TX at the time). I currently live in the Shenandoah mountains of VA and travel 3+ hours one way to Hopkins to see Dr. Birnbaum (as well as several other physicians there). It is worth the time, drive, gas, etc. He's the best there is. I was told he is the only physician in the nation to be both an actual rheumatologist and neurologist. He does research (which I'm involved in) for the neurological manifestations of rheumatological disease...SJS. He does seminars all over the US so if you can't see him, I'm sure he would give you a recommendation of someone on your area.
Good luck to both of you.
Anita
Hi JenJen, I'm sorry to hear about your mom, her death must have left you reeling and just intensified your symptoms, and then your doctors say it's depression? Wow, doesn't he see the relationship between stress and the flaring of a chronic illness? I guess it's the easiest way to describe what you're having to deal with, much easier and a lot faster than actually taking a look and seeing what is really happening. ::)
I've heard Dr. Birnbaum speak and he is a presence on the stage (a bit of a ham in that one! ;) :D). I've heard a lot of good things about him, and I'd be interested in what he has to say about your issues.
Hi Cricket, I'm also sorry to hear about your folks, that must have been the worst for you and your family. And I'm glad to see that you are seeing some relief finally.
Hi Anita, I'm glad that you're a patient of Dr. Birnbaum and he is helping you. If you don't mind me asking, what research are you in (just curious)?
I've also heard good things about the Mayo Clinic, did you find them helpful?
Have you ever been to the Cleveland Clinic? I know some of the members swear by them also.
Take care -
Patze
Patze,
Dr. Birnbaum is doing several research programs...all relating to the neurological complications of Sjogren's. All are sponsored by NIH. It is not for any particular medicine or treatment...just information gathering. He uses my labs, tests, evaluations, clinic visits/exams, etc and inputs this information into databases. The latest one was for diagnostic 'markers' of SJS in spinal fluid (CSF). I just had a spinal tap (looking for inflammation to help explain some of the neuro problems I have) in which they took extra CSF for his research to help identify these markers. This study hopes to bring about a way/test to reliably diagnose SJS (although the LP would certainly be a difficult test for general diagnosis).
The Mayo Clinic has a great set-up and some good physicians. However, I was in earlier stages and they blew me off. Although, some of their findings were helpful later.
Never been to the Cleveland Clinic. i do hear/read good things about them, but now that I have seen Dr. Birnbaum...the search is over!!! There is no need to look anymore when I have the best. He's a great guy...yes, he can be ham, but is extremely thorough and cautious.
Take care,
Anita
Anita,
Thank you for your information. I keep hoping Dr. Birnbaum will see me and anxiously await a reply from his office. I have a copy of his talk Neurological Manifestations of Sjogren's Syndrome that he presented in April 2009 at the SS Foundations Patient Conference.. after listening to that, I shared it with my doc and then sent the email..
Deb
Does the talk cover anything beyond the 2 articles that were in Moisture Seekers last year?
Is the talk down-loadable?
Kathyx
Rnathans -- I found the talk to be similar to the Moisture Seekers articles. There was a brief question and answer period after his talk on the audio cd.
Kathy -- I had to purchase the audio cd which also came with the power point presentation. It wasn't available as a download.. $12.00 from SS Foundation if you are a member.
deb
Hi everyone, thanks for your input. I will email Dr. Birnbaum, but I am thinking getting an appointment and a good work-up from him is the way to go. All my last bloodwork done in early Feb. was negative for everything.
Cricket---I'm sorry to hear about your parents. It really is hard to lose a parent and makes us think about our own mortality. My Dad is coping but still really a mess. They were married for 48 years and she was his everything (and did everything for him!!) We talk on the phone every night and both end up crying. I still make lots of tears, even with dry eyes :D
JenJen,
First of all I'm so sorry about the loss of your mother. I have been putting off emailing Dr. Birnbaum myself. I live on the west coast and it would be a very expensive trip and possibly multiple trips. I know I should email him regardless. My rheumy said he would give me a referral if that is what I wanted. He also said even with a lip biopsy he would give me the same diagnosis. I don't know why I still question this? I have a positive ANA, positive Schirmer's test, Anti-Ro of 448, CNS problems, etc. I also have fasciculations and some spasticity. I have been diagnosed with SS and fibro. I've seen 3 neuros and had normal EMG and brain MRIs. The last neuro at the teaching hospital where I go said not to worry I don't have neuromuscular disease. Of course I'm happy about that, but for some reason I still feel unsettled. I also have numbness in my mouth and teeth, ringing and burning ears, odd startle response, fibrations in feet, spasms in throat or esophagus, cognitive issues, fatigue, my muscle pain has improved some though. I've been going to physical therapy for about 8 wks now and it has helped, but the PT can't figure out why the muscles in my neck, back and arms never truly seem to relax. It's improved, but if I don't do diligent stretching and have adjustments I'm back to being a mess. The only thing that the doctors can offer me to help with the CNS issues is Nuerontin or Lyrica. I declined both and take a low dose of Tramadol and Provigil. I tried Plaquenil, but had a lot of stomach pain. Still want to give it another try.
As usual I've gone on and on... I guess that tends to happen when something seems to have taken over your life. I'm so very interested to find out what Dr. Birnbaum has to say to you. I 'm sending you support and encouragement.
Best regards,
Terri
Hi Terri,
Well, it looks like we have some things in common :) ! I emailed Dr. Birnbaum last night, so I will update when I hear back from him. Since we live far away, my hope is he can direct a more local team in treatment. Maybe just one visit with multiple days of testing could do it, I don't know. Maybe we could hook up and share a hotel! :D
I have been wondering about Fibro myself with these new symptoms. Sometimes my muscles will burn and I don't seem to have the muscle stamina I used to have, and the fasiculations I have read can be fibro related. I know I read alot about the Cymbalta/Lyrica combination for Fibro, but I try to take as few meds as possible, at least up til now. I did try Lyrica for about 6 weeks for this weird neuro stuff in my face, but it did nothing except cost a lot.
Did you take your Plaquenil with food? I know that can cause people trouble on an empty stomach. I've been on it for 6 years, but until recently only 200 mg. each day, now it is twice a day. Only thing I'm noticing is my already thinning hair is thinning more. Always something, right? ::)
Take care..........Jen
Hi Jen,
I started out very slow on Plaquenil increasing every week and I did take it with food. When I got up to 300 mg I started having pain in my stomach so bad it woke me up in the night. Do you know if Plaquenil can slow down the progression of all aspects of SJS? I still don't really understand how it works.
I'm curious about Dr. Birnbaum's recommendations for treatment. Since my neuro exams were primarily normal with the exception of some slight sensation loss I think the neuros just wrote me off. I think they just don't understand how worrisome it is when you have numbness, burning and other bizarre things going on. I am not myself anymore.
Maybe your emailing Dr. Birnbaum will encourage me to do the same.
Terri
Terri--
For me, the Plaquenil just seemed like it was slowing down whatever AI processes were going on. I've been pretty comfortable overall for the last 6 years and I just thought maybe the Plaq. was helping things not get worse. I've read here, though, that Plaquenil may not be enough to halt progression of neurological/vascular issues and the bigger gun medications may need to be tried. I've never been on Prednisone or Imuran or anything like that, but maybe that is the direction my future will take.
I could be wrong, but I attributed my eyes and mouth not getting drier and fatigue and general aches and pains not getting worse because of the Plaq. I've also read from others that they didn't notice if Plaquenil was making a difference until they went OFF of it. :D
Hello all!
Just wanted to send an update regarding my contact with Dr. Birnbaum.
Dr. Birnbaum just called me and said he needs me to arrange a lip biopsy before he will determine that I have Sjogren's.
The shirmer's test alone without positive blood results are not enough.
Have a Happy 4th of July weekend!
deb
Hi Deb
It's good that he called you and is taking your case seriously. How do you feel about having a lip biopsy?
Hope you have a fun weekend.
Take care - Chickpea
Hey all, Happy almost 4th of July!
I received an email reply back from Dr. Birnbaum two days after I sent mine to him (pretty good... :)) He indicated it would be best if I traveled and saw him in person, so now I guess I start the process to see if I can afford it. :o I suppose we can't really put a price on our health, though.
Chickpea,
Thank you for your note, that is a good way to think of his call. Your words helped me! I definitely want to get the lip biopsy, but a bit nervous due to some things I have read. Any info regarding what to expect would be great and what type of doctor does this??
Thank you again!
deb
JenJen,
I am glad you heard back and I hope you can make the trip. I look forward to hearing how everything works out for you.
All the best,
deb
Hi Deb
Glad I was able to help even a little. I haven't had a lip biopsy - they diagnose SjS here in the UK without them most of the time - but many others here have. I'm sure someone will be along soon to tell you all about it. Alternatively you could put 'lip biopsy' into the search box and see what comes up. From what I've read it's best to find someone who has a lot of experience doing them - so don't be afraid to question the doctor about his/her track record!
Take care - Chickpea
Chickpea,
Thank you again for you advice. I am going to call my doctor on Monday.
deb
Hi Deb,
I have had the lip biopsy...at Dr. Birnbaum's request (if you remember my ealier post, he's my doctor). John's Hopkins has a dermatologist perform them, but I have heard of ENT's doing them as well. The doctor that did mine had done many...but be sure to ask. I didn't have the greatest experience regardless of a top facility and doctor doing the procedure. It left a hard knot (about the size of a BB) in my lip and it's also numb. However, I wouldn't necessarily blame the doctor. My biopsy results showed so much scarring of the gland that they listed it as "end stage" Sjogren's (I didn't know there were stages). Therefore, my lip would have probably healed that way regardless of who did it. Be sure to ask about the pathology. Hopkins uses the Greenspan grading scale...which is highly recommended. I don't know if it's standard everywhere now. It wouldn't hurt to ask about the experience (and scale used) of the pathologist.
Good luck,
Anita
Anita,
Thank you so much for your reply. I don't have severe dry mouth, do you know if that is a factor in whether to get the biopsy or not?
If you don't mind me asking, were you hesitant in getting the lip biopsy?
A little nervous,
deb
Deb,
I have a moderately dry mouth, and like you had a very positive schirmmer test but negative blood work. The lip biopsy was to best way to finally determine if I had SJS. The only 'factor' in whether to get the test is whether the doctor thinks it's SJS and wants to pursue treatment. Dr. Birnbaum is about the most thorough doctor I've ever met and wouldn't ask for it, unless he felt, 1) it was warranted, and 2) necessary for a diagnosis. He would always use a noninvasive test if the option is available....he never just orders tests for the sake of ordering tests (like some doctors).
Honestly, I wasn't nervous. But please keep in mind that I have been through so many invasive procedures, that it would be unfair for me to say others shouldn't nervous. I've had 20+ surgeries (including open heart), and countless numbers of invasive "tests". I had not researched the lip biopsy before having it done so I didn't know what to expect. It only took 20 minutes or so (actually procedure time) and wasn't overly uncomfortable. The numbness is annoying, as is the lump it left, but nothing I haven't gotten use to.
Hope this is helpful,
Anita
Anita,
You have been very helpful and I appreciate your replies. I am going to make some calls today, I see my doctor on Wed. so I want to have my "homework" done. I will let you know what transpires next...
Thank you again,
deb
The plaquenil is an anti-inflammatory drug that is used to treat malaria in much, much higher dosages. Doctors discovered that when using the drug for the malaria the people with aches and pains of arthritis and other autoimmune issues improved. Doctors feel that the anti-inflammatory action of the drug tones down the autoimmune attack on the body.
It has shown to be true by all the people who find much relief from the drug. It is now the first line drug in treatment of sjogrens and does take quite a while to kick in. Doctors feel that it should be given with prednisone so that the patient is made more comfortable while waiting for the drug to kick in. After a certain number of months(different for every doc and patient I would think) the doc starts to taper dose the prednisone to see if there is relief from the plaquenil. It none is noted the prednisone is bumped back up or left at a dosage that is workable for the patient. Generally can get the prednisone tapered way down or patient totally off the drug.
Be aware that while the literature states that eye problems are caused by the drug there are many eye docs who have never seen any eye problems in patients on the med. It should be noted that the higher doses used in malaria are much more likely to cause the eye issues. But---it is very good that most eye docs want to do a baseline eye exam prior to starting the plaquenil and then every 6 months or so. Irish ;D