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.

I thought I was put on Methotrexate, but maybe it was Plaquenil, in the early 90's. I don't recall having a positive response. Recently, Prednisone has not seemed to control the symptoms as well. I am getting some relief with Flexeril as I attempt to drop the steroid dose.

This doctor said there were some new treatments that he would discuss in person. I am afraid to get my hopes up too much. I am also gunshy over new drugs.

If anyone has emailed or considered emailing for an appointment, he said he will be out on vacation for a week starting tomorrow.

I do feel the burning is probably due to small fiber neuropathy, but have been unable to convince anyone to do the biopsy, which he said would be done during the visit.

I have the burning Billye. It really is painful. A drug that helps blunt widespread burning: Urelle. You will think this is crazy, it is a bladder analgesic. As I explained to him, I have to juggle all of these things around to get relief.

Glenn: I keep hearing from other doctors that it is simply dry mouth, dry eyes, which is a crock... I saw a Baylor periodontist researcher once when the burning was in my mouth. She told me that "they" are finding that Sjogren's can affect various organs in the body... (I use Periomed for that-a prescription dental mouth rinse, along with Sensodyne toothpaste.)

Gee, she seems to be the only one around here who has caught on to that... I still haven't found the "theys" in our area.

Cathie

Dr Birnbaum emailed me back yesterday and wants me to see my PCP to have additional blood tests run:

(1) .....for the Sjogren's antibodies. These are the SS-A, and SS-B (also known as anti-Ro and anti-La antibodies)
(2) Do you have any symptoms of dry eyes? If so, your PMD should refer you to an opthalmologist, to have a simple, painless, and noninvasive test, called a "Schirmer's test"
When these tests are done, if either of them are positive, then it would be possible that you have Sjogren's

That was fast!
I'll have this checked out on my next visit to see my PCP & my ophthalmologist.

Bob--Have you never had those tests done? Really? Please say it's not true.

good time
 

To those planning on going to Hopkins: This is a good time to compile all your records and fill out the Lizajane.org charts. You can do it by hand or on the computer. But whatever you do, do get old results and track them over time.

I have the SS-B la la la antibodies also RNP, Schirmers-my eyes and mucous membranes are dry, but that seems to vary. Sometimes they don't seem to be as bad. I have some other autoantibodies that no one can ever make any sense of.

Thanks for reminding me, Liza Jane. I have done part of the chart, but just could not get very friendly with Excel, which I need to do, since you can record tests, results, dates etc and then magically put them in order by date with a click...

I must say, when I put what I did in order for one of the doctors to go over, he was most impressed... You should have a gold star... (:<) Or maybe you should have a patent...

Cathie

I'm not sure. My neuro (head of the dept @ Hopkins) is adamant about pre-diabetic causes, and when he saw that I was hospitalized (2000) for pancreatitis due to an alcoholic binge (I was self medicating with booze, had been suffering for years, & mis-diagnosed until that hospitalization) and Bingo ! 'Alcoholic Neuropathy'.........Go no further.
I'm, AN & pre-diabetic (high normal range).

Supposedly, he says I do not fit the mold for hereditary(?) Even tho I'm of Ashkenazic Middle-European Descent.(?)

My PCP has given me other tests that I requested (celiac, etc- she works with me), but do not know if I've ever had these two specific tests.

I'll have to ask her, and if not, get them done-but I do not have dry eyes. Crusty at times, but my ophthalmologist says its due to blephemitis and MRSA.(from when I spent 3 mos visiting my son in hosp. - daily. I Caught it from him. He caught it in the hosp.).

Nide
 

Have you been improving with supplements and diet and, hopefully, exercise? If it were alcoholic or pre-diabetic, I'd expect you to improve.

No improvement to date, but do take a boatload of suppliments -
exercise ....welll !! I should, but seldom do.
I have found that the progression has either stopped or slowed down to a crawl (time for another skin punch, I think) and with meds I lead a fairly normal, (pain levels at a tolerable 2-3), if not partially sedentary life after I get home from work.
I work in the locksmith trade and have my own business, so I do everything
from pay the bills to drill doors for locks - both commercial & residential.
Automobile lock work (very profitable) is too physically demanding with my PN,
I've stopped all but the lockouts.
I get home tired, sore, and ready for my 6:00 pm meds, but I go to work every day and haven't missed much time - since we've found the right med combination for me.
But additional (and follow-up) testing isn't a bad idea. I really should be more diligent,
but I get so tired of doc and doc appts. I haven't seen my PCP in the last 7 mos (and usually she has me come in every 2 mos) or my neuro in over 2 yrs.
A rest !!
No 'Chinese Fire Drills' (3 Stooges style)
or emergency needs.
A breather for a change.
I'm basking in it at the moment.

Bob
 

You did what so many people for pain self medicate,one of my
kids in-laws new he was a Diabetic but for years,and really the
type of job he had he would have drinks for business lunches,and in was
in pain with PN,he as many had no idea what that was.

He finally when to Family Dr. and she sent him to neour,hehaven't had
a drink in yrs,he lost weight,he excercises,can't walk without cane
or walker..He had all the tests and has the best insurance.16 yrs. later
the man is not getting better. Oh and sumppliments,his Diabetic is better,
he's in hs 60's but he suffers from PN from feet up the legs and
hands and up the arms..He is retired,and has the insurance and money
to go th hopkins,he is close enough to go to Barnes Jewish which is
where his Neour is,question why is he not getting better,oh he has
a great wife who watches him like a hawk..ha They were able to
travel but he just can't anymore.. Hugs to all Sue His b12 was normal.

Oh
 

Since my insuance saids no,i want to wish every all the luck.
I was diagnosed with SJogrens many years ago,I'm interested
in vasculitis well everything..My Ophthalmologist sp mother
has Sjogrens so he was very kind and my eyes were very dry,
Cathie he suggested I do what you do for mouth and teeth.
I also use suger free candy,and lemon drops or old theory
plain lemon suppose to milk the duct that can be blocked.
You don't want to get a stone.

Take good notes so we know what he has to say,New meds
might make me worry a bit to Cathie, well wouldn't hurt to
check it out. I been reading medical records ,for somthing
else for days. Hugs and good luck Sue

Hi Bob, i use to like a drink or 3 too :D, but my neuro was also adamant that mine was caused by prediabetes, he said i did not have alcoholic neuropathy, its just the beer is full of sugar which was defiantly not helping my blood sugars, he told me that i would not stay prediabetic for to long if i didn't change my life style, diabetes 2 was on its way :eek:, that was enough for me.
all the best,
Brian :)

Booze also depletes lotsa vitamins, esp B12.
I think that it was a result of that, not the booze proper, similar to you.
But my neuro is an old geezer and kinda set in his ways.
(but I think he's great, anyway)
I'll have to go around him to get add'l testing.
But my PCP & I work well together.

alcohol
 

alcohol and some drugs affect the aldehyde dehydrogenase metabolic
system. Thiamine in particular is used to get rid of aldehydes that build up
and hurt the nerves. So Thiamine and/or benfotiamine are useful for this.
Other things would be vinegar, Flagyl, disulfiram, etc.
Alcohol dehydrogenases also are affected:
http://en.wikipedia.org/wiki/Aldehyde_dehydrogenase
http://en.wikipedia.org/wiki/Alcohol_dehydrogenase

from http://www.ceri.com/alcohol.htm

I don't want to hijack Billye's thread, but i was definitely deficient in the B vitamins, always really tired and had a swollen tonque for ages before supplementing with multi B & b12..... b1 did help the burning & the lipoic acid i have recently added, got rid of the occasional slight burning i had left these days.
Thanks for those url's MrsD.

I haven't posted much, grappling with pain issues and med intolerances, sorry, I do try to read as much as I can. Waiting for my orthotics which will be ready in 2-3 weeks....which hopefully will get me up and moving a bit more...now that the weather is becoming somewhat less cold.

Anyway, interestingly, despite all the yea's and nays, my medical records that I requested and finally got, DO list Sjogren's by lip biopsy....but, I am not treated for it, because, of no inflammatory markers of any kind anywhere....except one sky high ANA elisa, that got blown off.

I managed to bite my lip in my sleep last night....(bite splint goes back in tonight) but I bit myself where my lip biopsy was, and it is still numb there so it doesn't hurt....but wow, the bite woke me up, it was so hard! Good thing I bit myself not some one else. (All this upset is over meds for pain and what and what does not work....I hope this new idea works, as I am still finding places where I missed the target with my last projectile puke...apparently, I grind my teeth when in pain, or just for recreation.)

Well regardless, I can't get to Hopkins, as my insurance would not pay...heck it won't pay for lyrica....it has paid for a lot of other things tho, so I am not complaining....I am not sure at this point how much of anything else I would tolerate anyway.....A whole lot of me is on slides, and I have had enough autonomic testing to know I would not have made the cut for NASA....shoot, bought all those Depends for nothing.:D (Let's see who gets this joke!) No new career for Cy....and no ride on the Vomit Comet. (That is fine, I don't need a ride into space for that experience....I do quite well up chucking on terra firma.

Cyclops..
 

I got the Depends statement!:D all the braincells aren't dead.;)

I think seronegative Sjogrens is a very real issue. There are posts all over the place in the Sjogren's forum about the diagnosis of this. And nerve damage from it is very real. I am slowly worsening. I fight just like you do...must be something in the DNA for us both. My husband calls it stubborness. Sjogren's is progressive, remember. It is imperative to slow it down. There is no way that I know of to stop it, but you can slow it.

Billye

Heh, heh....you won't go senile if you get that one!!:D

We don't have Lyme here either....LOL....of course, I have that on my list too, and it says 'physician diagnosed, EM rash'.

My doc is European, so he was liberal and did treat me with IVIG, and steroids....however, neither of those seemed to slow whatever I have down...well maybe it did....but, for now, no treatment.

I am a bit, not horribly, but a bit concerned about the cardiac changes. I will see what happens with my next echocardiogram. I can't help but believe it is all related....how many unrelated things can one person have...especially some of the rarer things....'Oh this is a rare but normal finding' OK, this is why I have 7 of them?

BTW, my son had positive blood cultures....the infection got into his blood...don't worry, he is OK, he has been and is still being treated...and new cultures were drawn....and the exact source of the problem remains a mystery. (I knew he was really sick and I am still miffed at the ENT resident who would not give him that second course of IV antibiotics). Regardless, he is on the mend.

wow
 

First of all I agree totally with you Billye,and that's why I glad some
of this group can go..

C I understood both of your posts,I din't know that about you son,
glad you didn't bite your husband or the yellow dog..:):)

The info is intriguing, and I believe I would make a most interesting patient for Johns Hopkins, but no way Jose would my insurance cover it. As it is, I'm gonna be paying Mayo for the next two years for my visits last December and January, so I can't go back east on my own dime, cuz I got no dimes left. :p

Wonder how many patients this guy's getting who have stroke like symptoms and/or brain lesions? Surely I can't be the only one with seronegative Sjogrens with such odd symptoms.

At the moment, my neuropathy symptoms seem to have stabilized again. The slightest bit of overuse will set things off, and my feet develop burning sensations on whatever part of them is touching a solid object, but the ankle weakness completely stopped.

I think the Imuran must be doing me some good. It's hard to tell sometimes with these meds because they don't really cure anything, but most of my Sjogren's symptoms are either the same or somewhat improved compared to when I started the med, which is much preferred to the gradual decline I was experiencing.

Too brain fogged to remember what else I was gonna say. Am having problems with a flooding basement, so will check in again when I can.

fanfaire
:cool:

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?

yes, mayo
 

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

Info about natural treatments
 

Hello---I am new to this blog and just happened to see this post about Dr. Birnbaum and your question about alternative treatments. I live near DC and recently attended Dr. Birnbaum's lecture at the Sjogren's Syndrome Foundation's national conference. I got to speak with him afterward and I have an appointment to see him in August (he is obviously very busy with his practice, because I'm having to wait several months to see him.) I am 56 years old and have had Primary Sjogren's since I was in my 20's but was not diagnosed until I was 35. My first cousin has it also. I have fibromyalgia, sleep apnea, chronic pain all over and extreme fatigue; also believe I have had some nervous system involvement for some time now, as I have had restless legs and some other symptoms for several years. Over all, however, I think I have done quite well using almost all natural therapies to treat myself for quite a few years. I have very bad side effects to just about any drug I take, and I believe that for the most part, when your immune system is
compromised, your body will probably NOT like chemical drugs!I have never had a lot of clinically significant bloodwork, however, I was diagnosed when I had a salivary gland biopsy done at Duke University's Sjogren's Research center that showed the lymphocytic infiltration which is positive for Sjogren's. If you read a lot of medical articles about Primary Sjogren's you will find that it is quite common to be "seronegative" but yet have serious complications from the Sjogren's, including neurological. What I wanted to pass along to those of you who are interested are 2 natural treatments that have especially helped me, one of which I just started 2 weeks ago but has already helped my nervous system symptoms of dizziness, imbalance, and tremors. After taking an herbal tea called Flor Essence for 5 days, which is the perfected version of a Canadian remedy called Essiac, those symptoms have already subsided.
After 13 days, I am experiencing more energy and sleeping better, and have had NO headaches since taking it!! Please research online to read about this remarkable herbal tea and draw your own conclusions! There is a fascinating book about the history of it called "The Essiac Report" by Richard Thomas which you can find in many book stores. Thousands of people since the
1930's have had remarkable success with this formula with many different conditions. I am very hopeful and excited about taking it! The other thing that has helped my eyes greatly is taking Evening Primrose oil (Omega 6 fatty acid) for about 14 years now. I read about studies in England that showed improvement in different aspects of tear functioning in those taking EPO, and after a year of taking it back then, my eye Dr. was amazed at the difference in my eyes. I no longer had the "staining" (dry spots) on my corneas. I am still taking it and had a complete exam and field vision test last week, and my eye Dr. here says my eyes look great! I can ONLY attribute it to the EPO, because my cousin has had numerous corneal transplants over the years and I have had NO problems that way. Be careful to balance it with taking Omega 3's also. Someone on this blog mentioned that "an ANA test decides" if you have Sjogren's Syndrome. That's actually not very accurate----an ANA (antinuclear antibodies test) can be positive for any number of autoimmune diseases, not just for SS. It is only one of numerous "clinical criteria" for establishing a diagnosis of SS. The salivary gland biopsy is still one of the most accurate ways of diagnosing it, as far as I know. I was told years ago that some people can actually have positive ANA's just because one of their parents does, and they may not actually have disease at all. The Sjogren's antibodies (SSA and SSB) are not even diagnostic for sure, because only about 40-50% of people with SS have them positive. Sorry this reply is so long, but I have studied much about Sjogren's for a couple of decades now (not that I'm an expert by any means), just have a lot to share, and definitely understand the misery that Sjogren's causes!

More info on natural treatments
 

One thing I should add to my previous post is that homeopathics have helped me tremendously! The Dr. Frank's homeopathic pain spray and Immune Balance have helped my pain and stiffness, and I regularly use one called Restful Legs made by Hyland's Homeopathics. I had to have unexpected surgery on my neck 2 months ago and afterward had terrible burning pain over a large area (NOT the area the surgery was done on!) and after 5 days of taking a homeopathic called Nerve Fix by Natural Care (capsule formula), it was all gone and has never come back! (Quit taking it several weeks ago...)
I do not even take Ibuprofen anymore, as it raised my blood pressure and I've never had high blood pressure! (yes, it can CAUSE high BP!!) I even take homeopathics for headaches and they work as well as OTC drugs and are MUCH safer!!! It is fascinating to read about the long history of the safe use of homeopathics, the science behind them, and the extensive pharmacopia that still exists. Herbs such as Gingko Biloba (liquid) have helped my brain fog and unsteadiness, and there are many others as well that have helped. One thing I have read is NOT to take Siberian Ginseng or Eleuthero if you have SS, because it has been found to increase B cell proliferation, which researchers now believe may be one cause of exacerbation of autoimmune diseases.

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.

With all of those positive immune factor tests--
 

--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

New Sjogren's treament center opened at Johns Hopkins, Bayview
 

Hi everyone,

The wonderful Dr. Julius Birnbaum is now affiliated with a new Sjogren's Syndrome treatment clinic at Johns Hopkins, Bayview. The website for the clinic is available - Google the jerome s greene sjogren's center to find the URL. The clinic is supposed to be a one-stop shop for Sjogren's treatment, where you can see neurologists, ophthalmologists, gynecologists, ENTs, rheumies, and neuros who all specialize in Sjogren's syndrome.

I saw Dr. Birnbaum last month for what I thought was neuropathy and now may be diagnosed as some kind of myopathy (based on abnormal EMG but normal nerve conduction tests). He seems like a brilliant doctor.

I also see Dr. Baer, the lead rheumatologist. He is very sharp, too.

I saw him and was not that impressed. He did not even do a blood draw. Too bad, because when I got home, I had seroconverted to a highly + ANA. I travelled 1200 miles for a half hour appointment that was supposed to be an hour and half consult. One good thing came out of it, they recommended I keep my IVIG....I still had to fight for it. Maybe if you live out east and are going to be an ongoing patient fine, but I would not travel there. Just like Mayo, you may not learn anything more. I don't know if they dropped their consultative service, but I hope so.

I am not putting down Hopkins, they are cutting edge. It is just there is only so much you can do for Sjogren's with PN, and likely I was getting it already.

I don't think it is good to self promote on a forum full of people desperate to find relief.

The ANA or antinuclear antibody test can be low positive in normal people, but seldom over the 1:160 mark. 1:80 is considered +. It is the 1:80 level that is sometimes a false +. True, you can have seronegative Sjogren's, and I had it, prior to seroconversion. I had a + lip biopsy in 2000 and for sure seroconverted by 2006. It may have been much sooner, but I did not have an ANA done.

The antibodies of the ENA are more complex. They represent the most common antibodies for the diseases of RA, MCTD, SSc, SjS and Lupus. A certain percentage of people have + results, depending on disease, and if they have those ENA show +, with the clinical picture, and ANA pattern, they are considered to have the disease. This is the rheumatological standard, and this is why many seronegative folks can't get diagnosed even with the lip biopsy. Only 20-30% of SjS cases present with a + SSA, slightly more for SSB. SSc, perhaps 40-60% will show a + Scl 70. So it is not an exact science. Also, the ANA pattern of fluorescence hints at some diseases. Speckled tends to be non-specific, and homogeneous shows with Lupus, nucleolar and centromere more with scleroderma. Mixed patterns occur and hint at certain diseases. I say hint, because, it is not decisive. Again, it goes by percentage of people with a certain disease, who show a certain pattern.

High + ANA over 1:640, is always indicative of inflammation and if it persists and presents with a clinical picture, it is indicative of autoimmune disease. You won't find a high ANA that is false + or not clinically relevant.

Levels over 1:1,280 are very high and indicate autoimmune process regardless of ENA. We can presently identify only a fraction of possible antibodies, and that is why the ENA isn't always the answer.

A repeatedly high + ANA is sero-positive. If no known antibody appears, it does not mean there is not SOME antibody, yet to be discovered, that is causing the issue. A + ANA is seropositive.

A + skin biopsy for CTD likely holds great weight.

PN is far more common in connective tissue disease than once thought.

A good percentage of people with any autoimmune disease present with sicca and Sjogren's. Lip biopsy can be + in a number of diseases, not just SjS. It can even be + in Sarcoidosis and in Amyloidosis, to name a few. Even chronic anticholinergic use can produce a + labial gland biopsy. However, it is considered the gold standard for SjS. Rheumatologists may still want more collaboration in my opinion.

It took almost a decade, and now, I am lucky to have a neuro, GI and rheum who work together and seem to understand the issues involved with autoimmune disease. I also have issues besides neuro. I too have a myopathy, which is not uncommon in connective tissue disease. Connective tissue diseases frequently overlap, and most of us have an overlap syndrome. I suspect the diagnosis of UCTD will become more common as docs learn more about autoimmune disease. I understand how frustrating it can be to be sick and not have blood markers. I am thankful to have seroconverted. Fortunately my doc put a lot of faith in + biopsy, lip, nerve fiber and muscle, and a lot of faith in me.

Also, Sjogren's shares a gene with scleroderma, the SSCA1. It is possible they share more. In cases where SjS occurs with scleroderma (SSc), the patients are more likely to have PN, with more severe SjS and less severe Scleroderma (SSc).

SjS can require big guns. Scleroderma (SSc) even bigger. I am all for using natural products when possible. My green tea helps a bit, but, I think that if you are diagnosed with SjS or SSc, you need to really think about your options. Severe cases can cause major organ damage, so can the treatment. You have to weigh risk versus benefit. You can't fool around with this. Altho other autoimmune diseases are frequently co-diagnosed, only these two diseases share an antibody gene. SSc is a multifacted disease and involves more than one gene.

Also, it is not unusual for seronegative Sjogren's to very suddenly convert to a + ANA, and a very high ANA at that.

I have been very fortunate that I have people who understand what I am going thru, and people willing to go to bat for me for my treatment. It took a while, but, the signs of the disease eventually became undeniable, even to the skeptic.

The Sjogrens center at John's Hopkins is truly excellent. After 18 months trying to figure out what my disease was diagnosed as Sjogrens with neurological effects. I am blessed to have found them. While the treatments are no fun at least I have hope and doctors who understand what is going on.

My neuros have thrown up the hands with my neuropathy,, sensory,, and a working DX of Sjygrons,, and now want me to go to Mayo,, of course that is if insurance will let me, a older poster mentioned Dr. Dyker,, that is the neuro they want me to see,, any one have any experience with him