New to forum and looking for some advice!

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New Member

Date Joined Jul 2008
Total Posts : 10
   Posted 7/18/2008 1:35 PM (GMT -6)   
Hi everyone-I'm new here and hoping someone could shed some light on my situation.
I was diagnosed with SLE back in 1993 and have had my ups and downs through the years.  I haven't been on any medication for almost 2 yrs now b/c of remission :-)  however, about two months ago I had two teeth pulled a wisdom and a molar.  Since then I have been sick as a dog!
The night after the surgery I had to be rushed to the hospital as I was unresponsive-while there I went unconcious another 3 or 4 times.  The docs told me it was b/c of a percocet I had taken almost 7 hrs before and discharged me with a diagnosis of syncope.  They suggested I see my rheumatologist and get some steroids.  I spent a full week in bed after that as my rheumo didn't want to give me prednisone b/c it would slow the healing down in my mouth.
After about 2 wks I went to him and told him my symptoms-extreme headache, nausea, weakness, fatigue, muscle aches and feeling of "fuzziness" in my head-I always feel like I'm going to faint.  He did bloodwork and went on vacation UGH but told me to follow up with my primary care.  Primary care wanted to put me on antibiotics but I cannot handle anything in the weakened condition Im in and she doesn't even think I have an infection.
I guess my question to all of you is have any of you had problems like this?  Do these sound like lupus problems?  Of course nothing is showing in my bloodwork except my B12 is low and my coritsol is low but other than that everything looks alright.  My white count was a little high (I think) but not enough to say it's an infection.
Sorry to babble-I just don't know what to do anymore-I'm waking up at night and feeling like I'm gong to collapse and then can't get back to sleep!!  Ugh!!
I would love any help!!! 

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 7/18/2008 6:13 PM (GMT -6)   
     I'm so sorry about your recent problems.  Have you ever had heart problems with your lupus?  I had syncope after a major flare and had to have a pacemaker inserted.  You need to be persistent with your docs.  Maybe they should put a holter monitor on you for a few days.  I hope you can get to the bottom of the issue and feel better soon.  God Bless You, Judy

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 7/18/2008 6:23 PM (GMT -6)   
I have polyendocrine problems probably caused originally from a TB infection and part of it is adrenal insufficiency. my son has syncope they thought was from Wolff-Parkinson-White-do you have that? When he takes any medicine that lowers his blood pressure, he faints and risks serious problems. Do you have low blood pressure? Do you have hyperpigmentation--spots under the tongue or mucousal darkness, bronzing of arms and legs, anything like that? I think you need to talk more with the doctors and consider their offer of antibiotics very seriously and make sure that what they offer is strong enough. You also have a right to have them do some investigation to determine what type of infection you might have to make sure you get the right thing and the scope of the infection.

My cortisol is low, but I would ask them about doing something called an ACTH stimulation test or cortrosyn stim test (same thing different name) to determine if you have any adrenal insufficiency. This is something you definitely want to push for. If you have low blood pressure, that might be something to talk to them about. Lots of docs think its a good thing, but with my son, who has epilepsy and syncope, it is very bad, because the epilepsy meds cause the symptoms you describe.

I don't know what meds you take but you might talk to the pharmacist or research their side effects too.

I hope you feel better soon and if you send more info, it might be easier to understand your situation.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

New Member

Date Joined Jul 2008
Total Posts : 10
   Posted 7/19/2008 9:00 AM (GMT -6)   
Thank you so much for the replies.  I had a 5 day holter monitor and nothing was found.  I am currently following up with a cardiologist but she doesn't expect to find anything.  I have an echocardiagram and a stress test scheduled.  I also have an appointment with a neuro next week but I'm sure they;ll find nothing also (that seems to be how it always goes for me.)
My primary care put me on steroids yesterday 60mg for 4 days, 40 for 4days etc.  I'm hoping this will help me enough that I can possibly take an antibiotic if needed. 
I don't have low blood pressure that I know of.  It has been taken at my office visits and it has been 118/90 which they always tell me is fine.
I actually started seeing a naturopathic doctor who is starting me on B12 vitamins and an antiviral/antibiotic at a very small dose to see if my body can handle that to take care of my infection-who knows maybe it will work.
My primary care just tested my cortisol the other day and it was back up to 11 but it wasn't a special test it was just in with regular bloodwork.
I've never heard of Wolff-Parkinson-White but I will google it and find some info.
I don't have any hyperpigmentation that I've noticed only one small spot under my arm that has never been there but I'll start looking!! 
My primary care wants me to see an endocrinologist also.  She mentioned something about Addison's Disease which I have googled and it makes total sense for me but then my cortisol came back normal so maybe not.  It's just so hard to get to all the appointments as I am sooooo weak!  My neuro is at 8:30 am on Tuesday and I don't know if I'm going to make it!!  Of course this is the only appointment I can get unless I want to wait until mid August so I'll have to find a way to get there.
Thanks for all the info-I really appreciate it.  Sometimes I feel like I'm crazy-it's good to know there are other people out there who understand :-)

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 7/19/2008 8:12 PM (GMT -6)   
Be sure to tell your primary care doctor that you've seen a naturopathic doctor. Neither my primary care doc nor my rheumy want me seeing a naturopath. My best friend is a naturopath and she gives me advice, esp dietary advice, but I don't take any vitamins she prescribes because my rheumy is concerned that they might interfere with some of my meds. Yours may work together, so that would be great, but just in case they don't, it's better to be safe.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin

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