Hello, I will be known as GMorris on this forum. I was with diagnosed with SJS about six months ago. I was told it was probably caused from a virus
I had years ago, that lay sleeping inside me body. In 1978, I was given the Swine Flu shot and shortly afterwards, I had symptoms of unknown origin. Eventually, I was diagnosed with MS. Some of the symptoms stayed with me, like tingling in neck, arms, legs ~ but I never had another attack. After ten years of waiting for the "bomb" to drop, I went to Emory Hospital in Atlanta and asked for more tests. The tests on both occasions were inconclusive. The doctor told me not to waste my life worrying about MS any more. He advised me to just forget it had ever been diagnosed, so I did. Suddenly, about five years ago, the dryness symptoms appeared. I feel strongly that the Swine Flu shot was the cause of my problems in 1978 and the sleeping giant virus is the cause of my problems now. I think they are one and the same. I would appreciate your opinions.
Another story ~ Three weeks ago, I had surgery to remove my gallbladder. I made sure the pre-op nurse knew I had SJS. When she gave me the pre-op injection, I asked "What is that shot for?" She said it was a drying agent in case I aspirated... "OMG", I thought! Do I need any more "drying"? When the anesthesiologist came in, he asked how the SJS affected me and I told him about the dryness, etc. His next question was "Have you had the pre-op shot"?
I figured I was in trouble then. When I came to in the recovery room, I could not breathe. There was no air in my lungs at all! The nurse said "You're doing good with the deep breaths, but try not to groan when you exhale". She did not recognize that I was in trouble! Scared, unable to talk, unable to breathe, I
went into panic mode. I struggled to talk and finally groaned out "Can't breathe". She said "No, you're okay, you're doing good." She still didn't get it. I
struggled again and said "Dying"! No response. I thought she had left me and burst into tears, whispering "Scared". Then I passed out. To make a long story short, eventually the anesthesiologist came in to help me. He put me on a breathing machine and the nurse fed me ice chips and eventually water until I was stable.
I told you all that long story because I want you to be aware, if you ever have surgery, make sure you discuss SJS with everyone involved. I thought I had done that, however; I found that many people don't even know about SJS.
The outcome of the story ~ I registered a complaint with the nurse manager of the facility last week. I advised her that the incident was the most traumatic
thing I had ever lived through. She apologized and said she had in-house training with the staff immediately after the incident. The new policy now is that
SJS patients will be cleared through the anesthesiologist for the pre-op injection. The staff will not treat it as standard operating procedure (SOP) any longer for SJS patients. I feel really good about that!
Hi GMorris :)
Welcome to Sjogren's world.
Thank you for the warning about surgery. It's certainly one to keep in mind.
It's not unusual to be dxd with MS and to later discover it is actually Sjogren's and SjS can also cause tingling and burning sensations.
I hope you find the site useful. I know you will find it friendly and supportive.
Take care - Scottie :)
Welcome, to the forum GMorris! Thank you for your information about the pre-drying shot!
As I tell most people, find what works for you. Some of us have posted what we are taking in our signatures. Check everything out with your health care professionals.
Welcome to the board...
I have mentioned my surgery experience last Nov. I awoke to a lovely laryngeal spasm. I was inhaling noisily. The nurse was freaking out. Another nurse was there, too. Both asking me if I suffered from panic attacks. I kept giving them the "constricted" sign...opening and closing my fist over and over again. They didn't get it. I have asthma, too. I wasn't DX with Primary SjS until AFTER my surgery from a different Dr., a Rheumy. They ended up giving me 2 breathing treatments and a steroid injection before I had relief. I was terrified, but strangely remained calm, concentrating on calming my throat. I believe it was due to the SJS dryness issue. My throat gets dry a lot. I stayed in recovery for about 2 hours with the normal stay being 30-40 mins for cervical biopsy. NOW I wonder if they gave ME a drying shot! I guess I could request records?... :-\
I am so glad your compalint got results and sooooo very sorry you had to go through all that.
They have yet to figure out what causes it. Nobody in my immediate family had any kind of autoimmune disease BUT I have 3rd cousins on my mother's side with a plethora of them.
I agree about not putting your life on hold. I did that for a few months during my "journey to find a diagnosis of 6 yrs) when a specialist told me he was sure it was cancer but I wasn't sick enough. But if I got XYZ symptoms I was to go immediately to the emergency room. After a few month of waiting for the ceiling to cave in I decided to take it one day at a time. It has helped me.
Probably caused by a virus? Sorry but that sounds so ignorant and too much of a "pat answer to get rid of you cause I don't really know but don't want to tell you that". Gosh us on the forum have heard em all.
I get the "Prize" though for dumb answers as I was told once by a specailist "It's The Cat's Fault"! ROFL ;D
I didn't even have a cat when my journey began either. Duh?
The Rheumy I see is the head of the Dept. at a teaching Hospital/University and she believes Sjs is caused by a virus. There are other studies being done in this area across the nation and in other countries.
Hi GMorris,
Welcome to Sjogren's World! :) I hope you'll find lots of great information here and some really nice and friendly people. It really is a sort of family; we encourage and support one another in everything.
That was a horrible experience you had! Thank you for reminding all of us to be sure that the medical staff knows about our dryness issues. I was very impressed when I had a screening in my local hospital a few months ago, and the anesthesiologist came in and asked me questions about my problems with Sjogren's. I was lucky that I didn't have any problems with the procedure.
Good for you to take action with the nurse manager. Thanks to you, other SJS patients shouldn't go through what you did.
As far as the virus being the cause of all this, there are many opinions. I honestly am not sure what I believe at this point. My focus is trying to make the best of the cards I've been dealt.
Looking forward to hearing more from you. Again, welcome!
Melinda
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I am hoping a cause = a cure.
quietdynamics,
Thanks for the links. I agree; I hope a cause will equal a cure in our lifetimes, too. Never give up hope! ;)
Thanks for all the encouraging replies and friendly welcomes! I have already learned a lot from reading the posts here. Thanks for the links, quietdynamics.
My Rheumatologist believes SJS is caused by a virus. I believe it was caused from the Swine Flu injection I received back in the 70's. The shot caused
many, many problems for people who received it. That's why I refused to take it when it was offered a couple of years ago.
The most recent problem I have is blood work from last week, which shows elevated liver levels and elevated calcium levels. Has anyone heard of
Plaquenil causing this?
GMorris, I haven't heard of Plaquenil causing elevated Calcium, but one thing that does, and can also cause similar symptoms to SjS, MS, and a number of other conditions, is Sarcoidosis.
You mention that tests for MS were inconclusive, but don't mention antibody tests for SjS, or how you were actually diagnosed. If it was a diagnosis of exclusion (nothing else fit) then it may be worth bringing Sarcoid up to your doctor, in light of the Calcium changes.
BTW.....welcome!
Welcome GMorris,
Thanks for the heads up, and you are right, this is a very helpful site. Do you have any idea what was the drying agent in that shot? I am wondering if it isn't in other things we may encounter, especially for simple things like cold medicine.
The usual "drying agents" given pre-op are Atropine or Scopalomine, not something you're apt to run into in any OTC medication.
CAT1962 ~ Your experience sounds very much like my experience after surgery. As I mentioned in the first post, I was trying to breathe and the noise that came from me sounded the way I imagine a dragon would sound when exhaling. They actually called it "respiratory distress".
Linda196 ~ Blood work to diagnose SJS was negative, the lip biopsy was positive. I was just reading from this site: http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_signsandsymptoms.html about Sarcoidosis and it really scared me for a few minutes. I do have some of the same symptoms but then I read one of the symptoms is weight loss. No worries, then! LOL
BTW, my brother had elevated calcium in his blood and had to have his thryoid removed. He was told by his doctor that elevated calcium could eventually cause thyroid cancer. A few years after the removal of his thyroid, he died of lung cancer although he had never smoked. Doctors said the lungs were not the original site of the cancer onset and they were never able to pinpoint the original site.
I am being treated for hypothyroidism for the past 7 - 8 years. I'm taking the highest dosage of Synthroid. My doctor added another thyroid medication when the increased dosage wasn't enough but can't remember the name of it.
hikerknees ~ I saw an answer to your question from Linda196. Feel free to ask me anything.
Thanks for all the kind responses! I'm so glad I found this forum.