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Lupus and possibly MS???

Hi everyone -
I am posting my story at the request of Quix regarding my official Dx of SLE (lupus) and the remaining possibility that I also have MS.  Here is my best "in a nutshell" form (lol):
Ten years ago, when I was 32 weeks pregnant with my son, I developed a very rare virus that settled in my lungs.  WIthin two days, my chest Xray went from clear to being in respitory failure.  I was transferred to a teaching hospital (I live in Boston - there are many!) as they thought I wasnt going to make it, and they had to accomodate a 32 week premie.  The problem was, they could NOT identify the virus - had NEVER seen it before (Im in some med books in Boston - truly!!).  At this point, I had developed ARDS (95% fatality) and sat my family down to tell them I probably wouldnt make it.  Well, they tried an experimental anti-viral drug, and low-and-behold - it worked.  They didnt have to take the baby, and I ended up having him two month later - C-Section.  OK - NOW....
Over the next year after having my son (who was beautiful and completely healthy, by the way!), I began having these strange Sxs such as:  bad fatigue, headaches, blurry, spotted vision (lots of floaters), feeling "out of it" and generalized pain.  I let it go for a while, and then went to see a rheumatologist at the suggestion of a friend who had just been Dxd with lupus - she said my symptms were similar.  I went, ALL blood work was normal, and I had pain in joints, but no swelling.  The rheumie said fibromyalgia and put me on Celexa for pain.  Well, it helped a bit, and I felt better for a while, but never was completely without symptms.  I just kind of dealt with it - slept a lot, took alot of Ibuprofen, etc.
OK - symptoms got worse, but they became really neurological in nature:  severe photosensitivity with lots of eye pain, balance problems, bladder problems (constant insistency, inablility to empty bladder), numbness, tingling, burning, etc..  I decided to go to a neurologist (my Moms) and he felt that I was suffering from some type of post viral syndrome.  He felt that the doctors successfully got rid of that virus in my lungs, but that it ended up settling in my CNS.  He admitted me to administer IV anti-viral medications, to see if that might help.  It was then that he also put me on narcotic pain meds for the pain.  Well, I did start to feel better, but within a year I began having seizures that could not be explained.  My joints were now starting not only to be in pain and stiff, but also started to swell.  I went to a couple more rheumies - all who said no to lupus as my ANA was always negative.  (Threre is no ONE test for lupus, but the ANA does point in that direction, and being negative here tells docs there is NO WAY it is lupus...or so we thought at the time).  OK, fast forwad to three years...still under care of neuro, MRIs done that show first - brain atrphy incompatible for my age.  The second had two tiny lesions in periventricular white matter - non specific.  (Meanwhile, my neuro says NOT MS, really thinks this virus has now triggered an autoimmune response).  The third brain MRI shows several multifocal lesions - does not think contrast is necessary..(?).  At this point, I am on ALOT of pain meds, and truly dont know HOW Im feeling - Im pretty numb, and unable to truly assess my symptoms.  I decide to go off all meds and leave that neuro. OK - from that time (2006 - present), I start from beginning - go to a new GP, who continues my anti seizure meds and anti-depressants.  I am now in constant pain, and really bad neuro symptoms, AND now really bad rheumatic symptoms - joints now are REALLY swollen and red, blood tests are starting to become abnormal (STILL a neg ANA, however) I now go to an immunologist...He is VERY dismissive, I feel humiliated AGAIN (Ive left out about 3 or 4 docs visits where they could not figure out what was going on), and I say "Forget it!!  Im done with docs for good!!  Its now summer of 2007, and - for the first time since everything started - I am almost symptom-LESS!!  I truly couldnt believe it...I had very little pain, very little fatigue, no swelling, vision was good - it was truly unbelievable.  Fall of 07 comes around, and I begin to feel lousy...vision really off, REALLY bad electric jolts, jerky movements, new headaches (pressure in my head), balance.  But, I also had now REALLY bad swelling of fingers, elbows, knees, edema in anlkes and shins...literally, I felt like I was falling apart.  My CRP was through the roof, as well as my sed rate (Both are blood tests indicating inflammation).  I went to ER a couple of times and was Dx with pleurisy, and possible pericarditis (fluid around heart).  This is when they start the steroid tapers which begin to work, but as the taper went down, my symptoms would flare back up.  I took a chance and went to see a NEW GP.  I really had NO EXPECTATIONS at this point, but I went for my husband.  At that point, my rhemie symptoms (joint pain and swelling, rash, edema, INSANE fatigue, etc) where so apparent, we actually never even got to the neuro ones.  She looked at me and said, "You have lupus.."  I said, "No, I dont...a ton of docs have thought so too, but I have a negative ANA"  She said that 5% of all lupus patients have a neg ANA.  She put me on steady, daily dose of predinisone, and plaquenil (lupus med).  I was DRAMATICALLY better within days...including my nuero symptoms.  When I told her about my neuro symptoms, she said that the lupus could be attacking the CNS.  She sent me to rheumie, (who, incidentally, I had seen a couple of years before, and he said he didnt know what was wrong as blood work was normal at that time, but really did believe something was going on).   I thought the rheumie was going to say that it WASNT lupus, and the other doc had made mistake.  Well....he didnt.  He said that there are very rare cases, where a patient exhibits more than enough criteria for a lupus Dx, but does not have the pos. ANA.  He said that I was a Classic Case of this rarity.  I was blown away.  There are 11 criteria for a lupus Dx, and you must have 4...I have 9!!  The only thing I DONT have is the ANA, and he believes that it probably HAS been pos in the past, but was missed (the ANA result can change for many diff reasons).  He doubled the plaqenil, and wanted to keep me on the prednisone for one more month, and then try to taper off.  That is where I am now...well, actually, worse than that.
So, due to a mixup at the pharmacy, I needlessly missed THREE DAYS of my prednisone dose (Quix - Im sure youre eyebrows went up when I said that - my doctor found out and almost fired the girl in her office who never relayed my refill request ).  THis is VERY dangerous, but in my case what happened is I began to flare again.  My symptoms were the same, but my neuro ones at this time are REALLY INTENSE.  They are all huge signs of MS.  Right now, because I started to flare, I was unable to begin the taper my rheumie wanted, and actually had to DOUBLE my dose for the next couple days into a taper, until I see rheumie next week.  The plan is to begin Imuran WITH the plaquenil AND the prednisone, but hopefully this will allow for a lower daily dose of prednisone.
As far as my suspicions go, I still believe that there is an additional neurological component to all of this.  Lupus CAN affect the CNS, but is VERY serious...I dont think that is going on here.  I have not had a new brain MRI in five years, and I would be interested in what it shows.  Believe me, getting a Dx of lupus finally was horrible (of course) but - as you all understand - there was a sense of relief, FINALLY, a sense of validation.  In addition to being "believed", I was able to finally get treated, and try and keep this disease at bay.  I have had lung, heart, kidney and liver involvement so far, but nothing TOO TOO serious that the meds couldnt settlle back down.
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Avatar universal
Quix -
Sorry, I didnt answer your questions:  I was actually thought to have Sjorgrens origianlly by an opthomologist (was sent there to see about ON).  A few years later, a professor at Tufts in Bosotn (they were running a study I wanted my daughter involved in, as she didnt have ins. at the time) looked at my mouth and said, "You have lupus, right?  Or Sjorgrens?"  I said no - because I didnt think I did...He sent me for blood work (I believe the SS-Ro was pos.)

The prednisone is supposed to help with those symptoms as well (OMG - my mouth and eyes feel like CONSTANT sandpaper - its awful) and Restasis for the lack of tears.

I do not know how often lupus and MS co-exist.  I do know it can happen, but I dont know how often.  My last test was neg for antiphospholid antibodes - but, yes, they were looking towards vasculitis...I had been on predinsone for months, however, and I know that that can alter the tests.  

Quix - My CRP is a constant 10 out of 1-3, and my sed rate is almost never within range - even ON the pred and plaquenil...So theres some major inflammation going on, but we dont know where...So, I continue with the 'roids...uughhhh.

Thank you again for your help - I think I answered all your questions...very very foggy today!!  Take care!

Lauri
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Avatar universal
All I can say is "WOW!!"  - what informative and accurate responses - thank you so much!!  Sorry about the lack of paragraph breaks - I do remember that is a problem for those with MS and their vision problems...will do in the future!

From this point on, as well, I will keep my chat on MS vs. lupus, however, if anyone would like any info regarding SLE, feel free to let me know and i can do so on another forum.  I am amazed, however, at the similarites with regards to Dx on both - or should I say lack thereof...I would think that MS would be a BIT easier, as alot of the symptoms arent as vague as SLE (tired, sore, rash - could be SO MANY things).

In any case, Im OK right now with being treated for my SLE only...that is lousy enough!!  And, I hope no one thinks that Im the type of person (there are so many on the web) that just needs something to search for with regards to their health...I really just wanted your opinions on my neuro symptoms, and you all answered me so graciously - thank you all for the time..

Wish - With regards to the meds...I really do understand your position - and there is a major difference between the "A" word and physical dependance.  I definately took more than prescribed, even though I did it truly to continue feeling better!!  But, definately, my experience is not always the norm, persay...And, certainly, until they get to the bottom of what is going on - they cant treat the CAUSE of the pain...its such a hard way to try and live...

Well, I will look into all the links, sites, etc. you all gave me, and if its OK, I would love to continue to stay on the board...There are a TON of sites out there, but there arent many that have truly knowledgable and compassionate members...Thank you!

Be well - Lauri
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488264 tn?1226520307
Take your point Quix, generally I` write just ploughing on as though no-one will read it.  I also find long paragraphs hard to deal with!

Deb you are a bit of a top researcher!  Looked at the article and saved a copy to my hard drive.  The reference list at the bottom is helpful tool

Lauri am sorry to hear you have had problems with narcotics etc.  They do mess up your interpretation of pain.  But chronic pain does too.  I am so used to hurting all the time I no longer see a new pain as a sign of damage (Quix I'll respond to you about my eyes in a moment on the other thread).  I keep getting the A word thrown at me (the one that ends in t, sometimes the one that ends in e too,  I'm not too popular with doctors).  Have been on narcotics over eight years, morphine about two years, valium one year.  I have to concede that I am dependant, but then the level of pain on stopping is unbearable, and it may or may not be withdrawal but I cannot just 'stop'.  My body expects all this junk in it every day, my staple diet.  Oops long paragraph.

Nothing else to say really rather than thanks for a great thread.  Deb if I get back into medicine next month will you please do all my homework?

Quix I'll look at the inod website too.  Lost you a bit re the Diagnostic Evaluation para but I suspect you were talking about a television programme?  I don't have a television so I am culturally a little out of touch.  I thought Diagnostic Evaluation was a GPs job though.  Personally I think it is often left best to the patients, we know oursleves well and have access to similar resources now.  Deb's research proves the point!

Be warned Quix and others who may follow, I may start a rant about my GP on my 'eye' post.  Look away.....now.

Will definitely re-read this thread sometime.

Wish

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147426 tn?1317265632
I'm so glad you posted (I see both of them) and read your story intently.  wow, you are dealing with a lot!  Deb gave you a superb and detailed answer and I likely won't be able to add anything.  I have narrowed my self education efforts more toward MS and not so much in the nitty gritty of pure autoimmune systemic diseases.

First I would like to ask you, Wish and all to try to add more paragraph breaks in your writing.  I hate to start out with a request like that, but many of us have great difficulty in eye tracking.  I'm one.  Large, unbroken writing is almost impossible for me to navigate and I end up nauseated and lost sometimes.  If you can remember to break thoughts into paragraphs or even just to start a new paragraph every several sentences, it would help those of us with this problem.

Your idea for a credentialed certification for "Diagnostic Evaluation" I think sounds heavenly.  However, medicine is so vast it would be impossible for one human being to be able to traverse all of it.  House is a pipedream (also an AH, but we digress)  However, the idea of a coherent team of knowledgeable specialists who would work together is wonderful (a la House).  We see too many (neuros in our case) who are unwilling to delve for the diagnosis that does not rise up and slap them in the face.  

This site is largely devoted, beyond info and support for people with MS, to helping the undiagnosed whose diseases resemble MS to move toward getting a diagnosis.  There was also a woman who appeared here briefly who has started a non-profit organization called INOD - In Need Of Diagnosis.  She runs a site "inod.org".  On that site are many resources for people much earlier in the search for a diagnosis than you, but that have some great resources.

Back to you.  You are in a difficult spot, where a definite diagnosis has been made, but you believe there is more.  So often I have some knowledge to add to the mix, but what I have is more questions to see if any answers will help you and your doctors answer whether SLE is your only problem.  

You mentioned something that I wondered from the very beginning and that is whether you have Sjogren's Syndrome.  You say you have that also.  Is that considered a part of the Lupus, or is it a separate diagnosis?    Are you positive for the antibodies, Ro and La?  Did you have the lip biopsy?   Sjogren's can have neurologic involvement that is virtually indistinguishable from MS.  The lesions look the same, the spinal lesions look the same.  The CSF can have an elevated IgG Index and Oligoclonal Bands.  The distinction is made by the history of dry eyes, dry mouth, positive serology (the specific antibodies) and conclusively by the lip or salivary gland biopsy.

So that leads me to ask if you have had an MRI of the spine and whether you have had an LP.  That isn't 100% helpful because both Lupus and Sjogren's can have spinal cord lesions.

Question for anyone that knows.  CNS involvement in Lupus is due to vasculitis, right?  Not demyelination.  So the lesions should appear to be small vessel disease.  Is Lupus Cerebritis always severe?  Is it ever milder?  I ask because your memory deficits seem severe for MS.

Any idea of how often Lupus and MS coexist and how they made the diagnosis?  I'd research it, but I'm about at the end of my reading and looking at the screen for today.

I looked up Imuran and MS.  Imuran has been used with success in slowing MS and in improving the development of new lesions.  In places where there is not a good way to afford the DMDs it has been used as maintenance therapy.  It has also been used with encouraging results along with a DMD.  Because of it's "cytotoxic" effects and the risk of severe infections along with later malignancies, it is not favored in some countries as a first line treatment.  But, it might be ideal in your circumstances where Sero-negative Lupus seems a certainty.

Well, I doubt that all this (mostly questions) was very helpful.  I was just trying to pick out and voice the specific questions that might be asked in your case.  I do think you found a wonderful palce to land, as we are all familiar with the h*ll of not being diagnosed and with wondering if our problem was MS.

I hope you stay!

Quix
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Avatar universal
Deb - Thank you for the warm welcome and all the info you provided...I appreciate the time you took, and am looking forward to reading the link you provided.  I definately do think I have SLE, as many of the symptoms can not be explained any other way (my post was so long before, I realized I didnt mention that I have the malar rash(butterfly rash), and have been Dxd with Sjorgrens and Raynauds!!).  I know that prednisone is used to treat MS as well, so Im happy right now that I am on a strong taper to get ALL symptoms under control.  I have to say though, that that hasnt happened yet - I actually feel pretty lousy these past few days...
My plan is to continue with SLE treatment (of COURSE - Ive only waited 8 years now!) and maybe make appt to see neuro...it couldnt hurt...and deal with whatever is decided.  A good friend of mine in a llupus support group Im involved in was Dxd with MS as well last year...He is going through HELL right now...the poor guy..
Dear Wish -
Thank you as well for your reply - Please dont apologize for the "rant"...I understand completely, and honestly - there is NOTHING worse than being sick and undxd...NOTHING...
About the pain meds...I understand how you feel.  My pain today is FAR worse than it ever was when I was on pain meds a few years ago, however, it is under much more control today, because I am treating the SOURCE of the pain (inflammation) with prednisone, versus just treating the symptoms.  This is a very sensitive issue for me, as I became addicted to these meds, and it almost ruined my life.  Please understand that I am aware there are many people who can take these meds in safety - I am NOT against pain meds!  - but for some (like me), being on them not only got me addicted, but made it almost impossible to determine what was wrong with me, as I couldnt differentiate between different types of pain, what TRULY hurt and what didnt.  I also learned AFTER I got off the meds about the actual chemical process that goes on when you are on a steady dose of opiates.  In a nutshell, your natural neurotransmitter that works to decrease pain NATURALLY stops working when the brain is receiving pain meds (the brain interprets this as not NEEDING to send out pain killing chemicals as there are enough from meds).  Now, because of this, when someone tries to cut down the pain meds, they are in WORSE pain, because their natural pain fighting mechanism isnt working.   Thus, they feel they NEED the pain meds to survive without pain.  ALSO, our brains become tolerant of the meds (as you may have already experienced), and we need more and more to get the desired pain killing effect.  It becomes a vicious cycle of having to remain on pain meds forever...When I got off the meds (I had to do this medically as my body was completely dependant at that point), it took a full SIX months for my brains natural painkilling mechanism to start working again.  THis was horrible, but whn it kicked back in, I couldnt believe how much LESS pain I was actually in, but didnt know because of the pain meds masking everything.  
Like I said, I know there are many people who dont have a problem with taking them, and they certainly are necessary in many cases.  However, I dont think docs take the time to explain what can happen over time, and the consequences we face in takin long-term narcotics.  Docs, I have found, very often just want to shut us up....whew.......sorry!!
Anyway,, I appreciate all the help...I have, for a very long time, wanted to start some sort of coalition of UNdxd people (it is usually women, particularly with SLE) and present it to the AMA.  There are hundreds of thousands out there with no official Dx, having diseases like MS and SLE whereby the disease is continuing to do damage, and we are not being treated...anyone up for some grassroots movement??? lol
Thanks again -
Lauri
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488264 tn?1226520307
hi,
I'll have to re-read your post sometime, it's a lot to take in.  Every so often SLE pops up as a diagnosis for me, including my GP at the last visit.  Then I have the blood tests and all is normal.  In the last few months from ongoing chronic symptoms I have had over some year have deteriorated dramatically in many ways, such that I'm 'falling apart' as I think you put it.  From sudden visual problems to weakness in my hands, to feet and ankles that are so inflammed none of my shoes fit, to stiffenss such as that I have to drag myself up if I have been in one position too long.  This is alongside  a three or so year history of chronic leg and pelvic pain and weakness, urinary retention such that I have to self-catheterize, and balance problems such that I now use a cane.  I was seen for years at an osteoarthritis clinic for minimal problems in my hips, although it is fairly rampant through my back, and finally have got the go ahead for a referral to a rheumatologist.  I have also been admitted to hospital in recent years with severe pleuritic chest pain and an abnormal ECG, and again SLE was mentioned, and again dropped as a diagnosis as the blood tests came back normal.  I myself was convinced that it was not the problem.  Now, with everything  swelling and my eyes hurting and seeing double and being unable to move first thing in the morning such that I have to 'fall' out of bed and then climb up, I am prepared to seriously consider this.  It's all down to my GP.  If he makes the referral to the rheumatologist then I know of specialist lupus centres here that will assess all forms, however atypical, and may talk about being referred to one.  I had a severe bladder infection a few months back, and it seemed to be that which triggered all that has happened since, this would fit in with an auto-immune resoponse.  I have lesions on my back which again were initially dismissed but are now being referred to a neurosurgeon.  Whatever is going on is systemic.  To add to the likelihood I remember as a teenager having the characteristic 'butterfly rash' on my face, and Raynauds, at that time nobody picked up on this.  All teenagers have bad skin and the Raynaud's eventually settled, never to return to date.  As is the way with western medicine each problem is only seen isolated from the others, and when you have a lot going on at the same time either the other symptoms are ignored by whichever specialist you are seeing, or you are treated as a bit of a weirdo for complaining of so many seemingly unrelated problems.  It seems now that finally, although I'm not there yet, my doctors and specialists are beginning to take in the whole picture, only as they have things they can see now.  They can see the swelling, the strabismus has been identified, the MRIs are showing inflammation and lesions.  After years of my telling them I had problems now they are reluctantly looking at them.  The old stereotype of women complaining of symptoms because it pleasures them is alive and well in medicine.  Nobody wants SLE, nobody wants MS, but even worse is having either or both these problems and not having them identified, because it is so much harder to move forward with treatment without the pin being put in the right hole - need to come up with a better analogy.  Wow, that was me sharing a lot.  You really hit a spot with me here!  Usually save this kind of ranting for my private journal.

I also need to look into the meds you are taking as to what they do and if they would help me.  My life is filled mostly with narcotics and valium in recent years.  This is doing nothing to address the cause of the problems and likely the sheer quantity of what I take, enough to kill the average person with no tolerance, is no doubt messing up my system further.  I do feel this is my last chance, either we get it right this time or my days are numbered.  These medications are damaging me and another issue with my heart and chest may come at a time when I am too weak to fight it.  This is where a lot of my fury at doctors is coming from, apart from the damage they have done me in the past.  I am getting so weak now that infections are affecting my like they do the elderly.  My problems should have been picked up on years ago.  But while I was looking well and young and fit and still complaining of so many problems they were repeatedly dismissed.  Doctors should try listening to their patients sometime, rather than waiting for the problem to become so severe it is obvious to see and likely by then has caused irreversible damage...  Now I am going to stop, because otherwise my rant is going to go on for a about 300 pages plus if I don't.  There is a lifetime of damage in here.
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572651 tn?1530999357
thanks for posting the link to the journal article - very good reading material while watching the olympics. I've emailed a copy to myself so I can print it out and reread it at leisure as well as keep it in my files.  It has tons of good stuff in it.

Thanks for sharing,
Laura
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429700 tn?1308007823
Welcome, Laurie!  I'm happy to meet you!  I understand your plight, believe it or not.  Many autoimmune diseases overlap in their symptoms.  To make things even more complicated, you are more likely to have other autoimmune diseases.  At one point I thought I had lupus, and was going from one rheumatologist to another over a span of many years to figure out what was wrong with me.  If it hadn't been for my sister also becoming ill with the exact same symptoms, I would have never have thought of MS.  

I'm not a medical expert.  I've only have had some experience researching and what my doctors have told me to try to figure out what was going on with me.  So if there's anything that I say that may help, back it up with your research or ask your doctor.  There's also lots of experienced people on this forum, including a doctor who has MS!  

What I understand you are asking is:  1)can you have MS and lupus? 2) can you have lupus with white matter lesions and symptoms that you've described?  3) did you have MS all along and not lupus?  4) do I have MS?  5) what do I do, now, to figure out what's wrong?

1) You can have MS and lupus at the same time.  From what I understand is that it isn't that rare.  

2) Lupus, when it attacks the central nervous system, can cause lesions that look like demyelinating lesions.  Sometimes a doctor can distinguish these lesions on an MRI because of where they are located, the shape, and the size.  However, most of them are indistinguishable from each other.  A doctor may may feel confident that it may be MS if they are in the corpus callosom, in a pattern called Dawson's fingers, oval, enhanced, and are not tiny. However, many people that have MS may not have lesions that fit this description.  There is a difference in how the lesions in MS are made and the lesions caused by CNS lupus.  

3) In my humble opinion, I think you do have lupus, because of fitting the criteria of lupus (this disease it really hard to diagnosis and you met the criteria) and have the joint pain and swelling that isn't a characteristic of MS.

4) It is possible, I think, that you may have both lupus and MS.  Careful consideration needs to be made in whether or not the lesions in your brain are caused by CNS lupus or MS.  Both are very serious problems which are treated differently.  CNS lupus is especially very, very serious.  It is going to take someone much, much smarter than I am that is highly qualified with loads of experience to take on your case and be competent to figure out what's going on.  

5)  As mentioned above, I think that the neurologist you see must be highly qualified.  You may want to see an MS specialist to rule in or out MS.  More than likely, that person would be the most qualified person.  He or she will probably ask for a lumbar puncture (LP), which may very well clinch a diagnosis of MS.  Unfortunately, a negative LP doesn't always mean that you don't have MS.  But if it's positive for oligoclonal bands (O-bands), MS is a big possibility.  

I would also do a little bit of researching.  I found a good article for you to read.  It's highly technical, but has lots of information on differential diagnosis of Hughes Syndrome, MS, and lupus.  It's a long article, but has lots of really good information (if too long, skip to section that starts with "Diagnosis").

http://rheumatology.oxfordjournals.org/cgi/content/full/44/4/434

Deb


  
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