any1 here with Lupus, Sjogren's, or Raynaud's?

hohDougRN said:
Jill and Babyblue; if it hasn't been stated already, it is very conceivable to have Raynaud's, Sjogren's, and Lupus alltogether.

Steph with your family history, has your physician verified the nonpresence of thyroid autoimmunities IE Hashimoto's Thyroiditis. Good luck and best of wishes for you.
Click to expand...


Thanks Doug

Steph, already answered her questions for me. ;)
 
yes they have tested my thyroids, they did a breathing test on me this monday and I went in to do a sleep study Tuesday night but didn't get to come home til about an hour or so ago. I got sick during the sleep study and they rushed me down to the e.r. and I am not getting any oxygen. my ribcage due to the damage from the car wreck is not expanding enough for me to be able to get the oxygen I need so now I am house bound until they get me a rechargeable one so I can have a tube everywhere I go. the reason the first sent me to e.r. is cause I broke out in a cold sweat and started throwing up and complaining of my lower tummy hurting. come to find out I have a bunch of small cysts on my ovaries in a"grape cluster" and they are oozing a lot of fluid. the pain plus the fact I'm not getting enough oxygen has sent them scurrying to the blood tests again. they took a bunch of blood last night, did urine, skin, bowel scrapes and samples, and did a whole bunch of other tests and will be getting back to me some time next week they said. at least I get 15mg of morphine every 12 hours for the next ten days along with an antibiotic and phenergan I hope they figure this mess out and help me get straightened out I am so sick of being sick!
 
I do know one of the ADer and old time deafchatter that some of us here in AD knows the person name TOF, aka TongueOnFire. This member passed on few years ago after battling Lupus. She is popular among online friends and made her friends laugh. She never thought anything negative, and she lived her life the best she can.

Her AD profile can be found here .

I hope you get well soon Steph :aw:
 
steph9700 said:
yes they have tested my thyroids, they did a breathing test on me this monday and I went in to do a sleep study Tuesday night but didn't get to come home til about an hour or so ago. I got sick during the sleep study and they rushed me down to the e.r. and I am not getting any oxygen. my ribcage due to the damage from the car wreck is not expanding enough for me to be able to get the oxygen I need so now I am house bound until they get me a rechargeable one so I can have a tube everywhere I go. the reason the first sent me to e.r. is cause I broke out in a cold sweat and started throwing up and complaining of my lower tummy hurting. come to find out I have a bunch of small cysts on my ovaries in a"grape cluster" and they are oozing a lot of fluid. the pain plus the fact I'm not getting enough oxygen has sent them scurrying to the blood tests again. they took a bunch of blood last night, did urine, skin, bowel scrapes and samples, and did a whole bunch of other tests and will be getting back to me some time next week they said. at least I get 15mg of morphine every 12 hours for the next ten days along with an antibiotic and phenergan I hope they figure this mess out and help me get straightened out I am so sick of being sick!
Click to expand...

Steph, I empathize dearly with all those yucky tests. They do get old. I dealt with similar objective as a youth. Nowadays I always feel dearly when I have a patient whom is going through scores of tests and exams. I hope you are able to obtain some resolution with this.
 
yeah the tests dont bother me anymore, I hate when they have to do the abg blood test but other than that the rest is just chicken scratch. I have had to do lots of blood tests all my life due to us moving around so much in and out of the country with my dad being military and all. I don't really mind it, it's at least them making sure they have everything noticed and treating everything instead of each different symptom they are treating the problems causing the symptoms. thank you guys for your support, the kind words help. During my sleep study tuesday night and all day wednesday they found I am not getting enough oxygen, wednesday night after they checked me out of the sleep study they had to rush me to the emergency room, I had another burst cyst on my ovaries and they found several small ones in clusters all around both ovaries plus a lot of fluid around the ovaries. I am going to the girlie doc next week and she is going to tell me if she is going to do a laproscopic to see if she needs to do a total hystorectomy or not. I hope she decides to I can't stand this mess and don't want it anyway, it's been nothing but troublesince puberty.
 
Yeah, those arterial blood gases aren't pleasant, especially when done from a poorly skilled practicioner.
 
hohDougRN said:
Jill and Babyblue; if it hasn't been stated already, it is very conceivable to have Raynaud's, Sjogren's, and Lupus alltogether.

Steph with your family history, has your physician verified the nonpresence of thyroid autoimmunities IE Hashimoto's Thyroiditis. Good luck and best of wishes for you.
Click to expand...

I agree...it is conceivable. Simply unusual. The reason I questioned whether the dx was all coming from one doctor is that some of the symptoms overlap.
 
I have to agree with jillio.

Growing up I have a very weak immune system. I had pneumonia twice as well with double pneumonia. I kept struggling with rheumatoid arthritis on top of other health problems. I was very fed up with the general health of my body.

Just fed up of taking medication plain and simple and I was sent to a specialist which found out I had Secondary Sjogren's.

I can understand how you feel. Sjogren's is hard on the body. All openings of the body gets really dried out. The mouth, eyes, nose and anything that has an opening will get dried out.

I have mouth ulcers pretty often and this is where you need to keep a food diary or remember what triggers the mouth ulcers. I stay away from almost anything with caffeine, sodium and anything that has preservatives.

My motto is if you can't pronounce the word of the ingredient, you shouldn't be putting that in your body.

Hang in there and understand your body's limitations. Respect it when it protests. Exercise in moderation and try yoga & meditation.
 
it isn't unusual at all, it is very common for a Dr. to find these things at the same time even if they didn't all happen at the same time. Dr. Toner ran a blood test called an "A.N.A." panel, it came back positive with a very high number which suggested autoimmune disorders and/or arthritis. They knew I already had osteoarthritis because I have been treated for it since I was 12 years old. I went in to see an army doc when I was 11 because I had fell off the monkey bars at school and my knees after 6 months were not getting any better so they went in arthroscopic, in other words they went in with a little camera to look and see what the problem was on both my knees and found something called "discord meniscus" which is a common thing but once damaged makes arthritis become an almost definite later on. what that is, is there is an extra ligament that is wrapped around the knee cap that isn't supposed to be there and you would never know it unless you damaged it really bad in some way, which is what i did. when I fell off the bars I landed straight on my knees ripping both knees open including cracking both knee caps. when they put the little camera in there they scraped my knee bones and removed the damaged meniscus. i got to watch the video tape of the surgery when i went home, it was so cool, my mom was gagging saying how can you watch that knowing it was your knees they were doing that to and eat a hamburger at the same time, i was 12 so i was like i don't care i feel better now and it didn't hurt cause i was asleep, then the pain meds wore off and all crap broke lose, lol. I have had cortisone shots in each knee every three months for the last 4 years now because of the pain from the arthritis. I was in a car wreck in 2006 that caused me to have a flail chest which was even more stress on my body. I have been reading up on Lupus and the other stuff and they say that a person could have all of these things for years and never know it until some type of trauma or something else happens, I think this last year has put me in the top spot for bringing out my sypmtoms so the doc could see them and do the tests to verify I had the problems. with both my mom and brother killing themselves with hand guns, (my brother was September 20th of 96 and mom was march 20th 08), then my dad dying in my arms 3 months later, June 30th of 08 it spiraled me into a major medical and mental meltdown that luckily got well documented by the doctors so they were able to give me the right diagnoses and start helping me with treatments they felt would work. I have an oxygen thing on my nose most of the time now, a c-pap machine on me at night, countless amounts of blood has been drawn and they are trying to find the right mixture of pills to help with my symptoms including the pain and depression, and it has now become a team of doctors working together to help me. the boss of the team is my primary care physician Dr. Toner, then I have a Rheumatoligist named Dr. Watterson, then the orthopedic guy, Dr. Mallempatti for the joint and bone pain and possible future knee replacement, then there is the psychiatrist Dr. Kundlar, and the OB-GYN doc, Dr. DeRosier. Oh and the pulmonoligist- the sleep study and breathing tests- he is Dr. Heidecker, and they are working on getting me an appointment with a neurologist as well. I make sure everyone talks to Dr. Toner and she is aware of everything that happens, as a matter of fact she is second on my emergency contact list under my husband now so that way if anything happens she knows. She is the one who did the first blood tests and she has referred me to the other Dr.s for the other things and they all work in the same hospital, or at least they have what are called hospital privileges at St. Vincent's in Birmingham. Dr. Toner's office is in Gardendale, as is Dr. DeRosier's. Dr. Mallempatti and Dr. Watterson are over by St. Vincent's east, Dr. Kundlar is with Alabama Psychiatric Services on Acton Road and I have been seeing him for almost 7 years now, and Dr. Heidecker is in the professional office building at St. V's downtown. I only have one pharmacy and everything is sent by email to my husband as well so he can keep an accurate record as well in case we decide to go some where out of town he has my complete medical records on a disk that any doc can access wherever I go, so no it is not uncommon to be diagnosed at one time with all these things, try going to a website called: Online Support Groups for your Health Challenges or to: Cafe Chronique they are really good support sites for people like me that have been given crappiest gene pool imaginable, you can also go to the Wikipedia and look up SLE or Systemic Lupus, or Secondary Raynauds phenomenon, or Sjogrens Syndrome and you will see on these pages that they all have links to the other pages saying it is common to be diagnosed with these things in the same person at the same time or close to the same time. also you can type in on a google search these doctors names that I have listed that are treating me and birmingham alabama and you can check their professional backgrounds if you question their ability to do their jobs


Melissa Toner, Rebeca DeRosier, both at Gardendale medical clinic in Gardendale Alabama It is also listed under the brookwood primary care network,

Dr.'s Watterson and Mallempatti are at St. V.'s East and you can go to their website, www.aossma.com
Dr. Kundlar, http://www.apsy.com/ he is at acton road
Dr. Jay Heidecker is at St. Vincent's hospital downtown Birmingham
(Watterson is the rheumatoligist I went to that decided he was going to save me before he treated me medically. he is smart but I am not paying him to preach, I am paying for medical treatment, if I want a preacher or sermon or whatever i will go back home to my church up in Hanceville where my family is buried at and I did tell him that a couple of days ago)
 
Last edited:
got a call from Dr. DeRosier's office, she is sending me for a C.T. scan today of my pelvic area and has all my records back from my previous "girlie" doc and as soon as she see's the results of the cat scan she is going to give me a date on a complete hysterectomy. the reason she is doing the C.T. scan is to see how bad the damage in the lower area is so she will know whether or not to have a general surgeon in there as well to assist. like I said, I had gastric bypass then a panniculectomy which is plastic surgery to remove the flap of extra skin and fat hanging down off your stomach that wont go away any other way. I had the gastric bypass on 6-11-03 then I had the "almost tummy tuck" on july 5th 06. I also had a car wreck not too long after the tummy surgery which caused major issues, on August 20th of 06 a month and a half after the "almost tummy tuck" I hit a deer heading out to my mom and dads house to check on them and the stitch line where the staples and drain tubes had been across my stomach (called a bikini line cut or something like that) broke back open plus some and I got a free helicopter ride to UAB trauma unit where I was rushed into emergency surgery to put my inside back into my tummy, scrape all the melted glass off of my leg and clean up the other burns and then have a tube poked in my chest to keep it inflated due to me having what they call a flail chest. the flail chest basically meant that my ribcage looked like a bunch of toothpicks scattered across an x-ray. I had 7 ribs on my right and five ribs on my left completely crushed and my sternum or breast bone had to be wired together in a couple of places, luckily I didn't have any organ injuries like punctures from the broken ribs so yippee! i survived to hurt another day! (yes I am sorry I am being a smarty- I am hurting right now and ill at nothing and everything, not mad or ill at any person here at all though!) . so very long story ending: I am getting ready for a total hysto and honestly I can't wait to get all those durn hormones out of me! I have known for a long time I have something called pollycystic ovarian syndrome, it is where instead of your eggs coming out and going away with a period or becoming a baby they stay and turn into cysts. plus it causes me to have facial hair with the crazy hormone imbalances and with the family history of cancer as well as all this other stuff I asked her if she would just take it all out and she agreed. :hmm:
 
From a fellow Sjogren's sufferer to another, I can understand your pain.

Have you considered attending a support group that meets together to share their feelings & support each other? Hang in there.

Edit- I checked in the SSF site- There are support group meetings in Daleville, Dothan and Montgomery.

SSF support group locations.
 
Mrs Bucket said:
From a fellow Sjogren's sufferer to another, I can understand your pain.

Have you considered attending a support group that meets together to share their feelings & support each other? Hang in there.

Edit- I checked in the SSF site- There are support group meetings in Daleville, Dothan and Montgomery.

SSF support group locations.
Click to expand...

all of those are way out of the way for me, I can't go that far, I am good with the internet support I have you guys and that's as much as I need, when I need a slap on the head or a hug I can always get it here and if I ever need to vent I can do that here too! thanks for looking around for me though!
 
Back
Top