New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/13/2009 5:50 PM (GMT -7)   
Hey everyone!!! As some of  you know, I have been having  rough time, so I finally emailed my rhuemy thursday about what has been going on. A few hrs later I got a call from the office and they wanted to see me the next day. To make this short, rhuemy ordered a ton of tests covering everything...7 tubes of blood and urinalysis, anywho, while we where talking she said she wanted to schedule a MRI. She has a inkling that Lupus might be attacking my nervous system. I am so confused I don't know what to do. I am taking all my meds like I am supposed to...15 mg of pred, 2000mg cellcept, 20 mg of lisinopril, 325 mg of ferrous sulfate (iron) and some others. How can this disease get worse with all the meds? Why is protein and blood in my urine AGAIN? Why in the middle of the night do I wake up extremly light headed, insides on fire, heartbeat pounding through whole body, shaking, and having trouble catching my breath. The last few times these episodes have happened I have woke up to seeing things that arnt there! Why are my joints so painful and massivly inflamed? When she asked me to hold my hands out and not let her push them down...I failed, then she told me to hold my fingers spread apart and not let her push them together, I couldnt do it. She also mentioned Diabetes...I have never seen her this worried. You could easily see it written on her face. We usually joke around, laugh, and have a good time...Not this time. It really scared me. My mom who is visiting from FL, went with me to meet my rhuemy and she even said she seemed very concerned which made her very concerned (she is a retired RN). I am in tears and terrified and don't know what to do. What is a MRI going to show her? What is it like? She asked if I was clausterphobic (sp) and I said no! The only thing I know is I will be in a small tube like think having pictures taking but thats all I know, how is this differnt than x-rays? Anyone have any advice how to deal with these emotions I am having?

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 6/13/2009 6:21 PM (GMT -7)   

Hi Amy - I'm so sorry you're having such a rough time!  I don't really have any answers for you - but I have had an MRI.  I'm a little bit claustrophobic, but I managed to get through it.  It was a big tube.  They give you ear phones with music and a little button to push if you need to talk to them or feel you need to be pulled out for any reason.  So just remember you have some control over the process.  It is very noisy - I have no idea why it is - but there is a hammering sound while you're in there.  My husband is laying wood floor in the family room right now.....sounds about like that LOL. 

My mother had one before I did.  She advised me to just keep my eyes closed - which I did, and I think it was helpful.  So breathe, and relax as best you can, and close your eyes and know you've managed to get through everything before and you will get through this, too. 

I'll keep you in my prayers - hang in there!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/13/2009 8:29 PM (GMT -7)   

Hi Amy:

I've not been posting much cause I feel so bad, but I read your post and wanted to respond.  First off I'm really sorry that you're feeling so poorly.  This darn disease can continue to flare even tho we're on meds.  I've been in a chronic flare for 3 years now.  I've taken every sticken drug and they can't do anything for me.  That being said I hope that they'll get the correct mix of meds for you and you'll go into remission.  If you have mulitple issues like I do it's a never ending battle to keep all the diseases uncontrol.

To answer a few of your questions.  The MRI can show if you have lesions on your brain which can show CNS lupus.  The MRI is used with magent imagining and there's no radation like with an xray.  Also, you mentioned a possiblity of diabeties, if you're on chronic medium to high doses of prednisone it can cause diabetes.  I'm on metformin as my sugars where starting to rise.  When I'm really bad and in the hospital I end up getting insulin as my pred doses are thru the roof usually.  I don't know how long you've been on 15 mg of pred but that will cause the diabetes I'm sorry to say.  It can cause an elevated white count, suppressed immune system and easy brusing in case you didn't know. 

I'm gonna keep you in my prayers and if I can be of any help, drop me a note here and I'll see it and I'll try to help.  I know this is all upsetting and frustrating.  I've had lupus for 23 years now and since June 2001 I've only gone down hill.  After being treated with everything and developing blood cancer or also known and smoldering luekemia, I'm now gravely ill and need a bone marrow transplant in addition to fighting my lupus and RA and the fibro on top of it.  Even tho my life seems mostly like crap everyday, I still keep fighting to stay alive.  Don't ever give up Amy dig deep inside yourself, mediate and the forge ahead.  I know this road seems hard to walk and it's lonely, but we're all here with you and understand.  I hope the MRI goes well and know you're being thought of.

Hugs,

Barbara


dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 6/13/2009 8:47 PM (GMT -7)   
Amy,

Can't help as I've never had an MRI, but I wanted to let you know that you are in my prayers.
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/14/2009 6:29 AM (GMT -7)   
Hi! Amy,
I have CNS lupus and your symptoms sound an awful lot like mine when I was having a flare while I was first really sick. I kept blaming anxiety attacks, and woke up literally crawling out of my skin, with my mind spinning with distorted reality. I truly felt I was losing my mind. And my neuro said my nerve inflammation was the cause. I am very blessed, very med tolerant. And all my meds, thank God for prednisone, they help alot. Most of the time. I have had 3 mri's and even though I am a nurse, I was scared almost to the point of stopping the test when I had my first one. The tube is tight, but I am not petite, rolleyes I brought a CD of my favorite music that helped, and the tech talked to me alot and timed the periods when the scanner was actually testing. Like, Sue, this part is 12 minutes. Then the horrible slam banging wouldn start as the scanner took pictures. That's when you have to hold really still. They wrapped me in an extra blanket cause I was frozen! And I asked for a washcloth to cover my eyes with so I wouldn't have to look at where I was. The next two were alot easier, but then, by then I was on plaquenil and neurontin. And now, looking back, it really wasn't that bad at all. What was really scarey was that I was so sick and it seemed like I was the only one who believed me, (because I didn't LOOK sick smhair ) So I was really glad to be IN the scanner having the test. Wishing you the best and better days to come,
sue
 

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/14/2009 8:57 AM (GMT -7)   
Amy,

I [ami] claustrophobic, so when I've had MRIs, my doc gives me a script for 2 valium to take prior to the test. They do the job!

You are way too young to have to be dealing with these issues! cry cry cry It just made me want to cry to read your post. Having experienced six decades of life, I've had plenty of time to live through life's ups and downs, which prepares one to learn to accept tough times. But at 21 you're just embarking on the joys of being an adult. I wish I could send a magic pill your way, but instead, I'll send you my thoughts and prayers.

You're a brave young lady. Just keep repeating over and over, yeah yeah yeah I can do this!!!! yeah yeah yeah

(((((((hugs)))))))

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/14/2009 11:48 AM (GMT -7)   
Well, I had a long reply typed and when i clicked submit, the internt went out. I had thanked everyone for their wonderful advice and encouragment. It is so helpful to me. I guess I don't understand how a disease that can cause so many problems, not be more known about. How can their be no meds aproved for Lupus in over 50 years? After reading everyone's stories about how it effects everyone differently, how can their not be more research to help find a cure?
 
I do have a few questions about CNS lupus...what is the treatment or does it vary? When my rhuemy was telling me what she suspected might be going on, I asked her what the treatment was. She gave me this look like you are going to hate me and said some of the meds you are on know will be used...so does this mean high doeses of pred? Also, can you share with me what your stories are with CNS lupus?
 
thank you for all the MRI advice...i will defianlty keep my eyes closed and I already have my favorite CD picked out to listen to. It has all the songs that inspire and encourage me when I need the inspiration! Thank you, thank you , thank you for all the info! It will and has helped me greatly!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/16/2009 6:50 AM (GMT -7)   
Hi! Amy,
I am 54, a nurse, mom with two daughters, a grandaughter and a husband who is my lifeline. I wasn't diagnosed until 2005, but knew I was seriously ill 6 years before that. Lupus is a "target organ" disease, that is, a disease that can affect different organs, at different times, but the commonality is inflammation, which is what is essentially to blame for everything we endure, especially during a "flare" which is a sudden increase in systemic, all over the body, inflammation.  Inflammation is characterized by redness, warmth, swelling, pain, and impaired movement. In lupus, it is often inside us, not visible, like it is if you sprain your ankle for example. My SLE is CNS lupus, that is, it targets my nerves. So I fall, have ataxia, feel horribly weak, my legs can swell, my brain swells, my thoughts get impaired at horrible times, and I am taking the standard "lupus" meds that help the symptoms, Plaquenil, Neurontin and prednisone are the ones that help me the most.  I started Plaquenil first, then Neurontin for the nerve pain, the every nerve in my body crawling and cold and twitching from the inside, kind of pain, and for two years, tried to manage the flares, including pneumonia, that happened every 3-6 months. My prednisone prescription was 40mg daily for a week, then 30, then 20, then 10 then skip a day then off. The only time I felt well was my high dose week. The roller coaster of ill to iller was killing me. So then the doc said, lets try whatever daily prednisone you think you need, and get to the lowest dose that works, which turns out to be 5mg every morning. I feel best in warm summer weather so I have his ok to try weaning down to 2 1/2 mg.  I have tried once and it didn't work, cause it was spring and I got an allergy triggered sinus infection. My dr. is great and said there are some lupus pts. who do best on a low dose maintenance, and until I want to stop working, I take the prednisone. I have yearly eye exams for the plaquenil, and a bone density scan to stay on top of the osteoporosis risk from the chronic use of prednisone. When I am not taking prednisone, I fall. Alot. I hope I have answered some of your worries, it is a blessing to have this site to share.
hugs, sue
p.s. I have had the same dratted problems with the gremlins in MY computer deleting my emails, too yeah

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 6/16/2009 11:06 AM (GMT -7)   
MRIs are claustraphobic and noisy and you have to lie still but they are really no big deal.  I had several in the hospital when I was completely crippled and the worst part was that I had to lie on each side and had terrible joint pain.  But that was not caused by the mri it was because I had lost 40 lbs of muscle from polymyositis and was completely crippled.  The first time I rolled over so they had to back me out and prop me on my side with pillows.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/17/2009 9:55 AM (GMT -7)   
Well here is an update...Got my labs back and there is definately something going on. My rhuemy still wants to do MRI and mentioned heart moniter. I have decided not to get the MRI...I don't want to know what is going on, I figure if it gets bad enough, the symptoms will get worse and then we can work on the problems. Also something a little interesting. I have been checking my blood sugar and during the day it will be anywhere from 120-135 and at night it drops down to 48-72. Could this be meds causing this difference? I am writing down everytime I check it and and going to give the numbers to doc...I go back on Monday to meet with my rhuemy and try to get some things figured out. My blood pressure is also staying around 138/100-142/107 so they increased my lisinopril to 40 mg. Since the increase, i checked it yesterday and it was 128/96, so i guess that is getting better slowly. Does anyone have high blood pressure and their blood sugar fluctuating like mine is? The pred increase has helped a lot with my joint pain so I am feeling alittle better, thank goodess..Also thank you for sharing your story/experiences with me! Hope you all are doing pretty good!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/17/2009 9:58 AM (GMT -7)   
Yes, Sue you have helped me greatly! I agree this forum is a blessing and I love your signature...God knows, even if i dont! It reminded me of somethings I needed to be reminded of. Can go into detail on the forum but thank you!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/17/2009 7:33 PM (GMT -7)   
Amy if your rheumy wants you to have an mri here's an idea...............Get 1. Despite what people say (even me when I rant) Ignoranace is not bliss. If they find something they can treat it if they find nothing then GREAT! I'm saying this assuming you have insurance of course as the procedure is not cheap. Somthing is waking you up in the middle of the night with pounding chest and not breathing. You could have sleep apnea. That can actually cause some of your other symptoms. You can actually expire from sleep apnea if left untreated. I had to redo a mri recently because I flipped out in the machine. I've had mri's so many times I can't count and it never happened before. The nurse said it happens all the time no matter how many times you have had them. It just happens to be your day. So I took a xana the next time and I was fine. Anyway I sure would like to hear you changed your mind. But I support ya in what ever you decide
love ya
carol
 CAROL
 scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 6/17/2009 8:48 PM (GMT -7)   

I think Carol has a really good point, Amy.  I can understand you being fed up with all the testing and worrying, and getting lots of "semi" answers.....but catching something early and getting treatment sounds like a much better scenario than waiting to see how bad things might get first.  I was terrified of getting a heart catheter.....beyond the norm....I was sure it would lead to open heart surgery, and mean the end to life as I knew it.  I mean, seriously, I was really really stressed about it (lots of heart disease in my family).  But a workout buddy who had been in the military most of his life said to me "We're not going to worry about the what if's - you're going to get this test, and if it shows something needs taken care of, then it'll get taken care of.  Period.  It's one foot in front of the other." That helped calm me down a lot.  That and the little valium they gave me just before the procedure took care of any and all apprehension.  And everything was fine. 

That said - I also respect your right to hold off and follow your instincts on this - to a point.  You've been through so much already - you've got a LOT of spirit and strength, so don't let your fear grow legs and run off with you now.  I'll keep you in my prayers, and hope that all goes well at your appt. on Monday.  It's good your monitoring your blood sugar and BP.

Hugs,

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/19/2009 7:10 AM (GMT -7)   
Hi! Everyone and Amy,
I vote with Carol and Lucy yeah   Free advice, worth twice what you are paying me. nono   Prednisone can really mess with your blood sugar. And low blood glucose levels are really serious, so you have some life threatening symptoms you don't want to get any worse. But I certainly understand our right to refuse tests, and we all make decisions that are the best for us to make at the time we needed to make them. Did that make any sense???? ..........I am an old ICU nurse and teach nursing, and am a mom and Gramma. In fact, my darling 7 month old is napping and spending the day with me. I refused a spinal tap pending my next episode of need to be in the hospital. Please forgive me for nagging at you. I feel like you are one of my daughters! tongue God bless, I will think of you Monday. I, too, have episodes of scary hi blood pressure and we are both way too young, (I am 54) to have a stroke.
hugs,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 2:04 AM (GMT -7)
There are a total of 2,735,781 posts in 301,335 threads.
View Active Threads


Who's Online
This forum has 151435 registered members. Please welcome our newest member, Manny222.
163 Guest(s), 4 Registered Member(s) are currently online.  Details
Heatheranne87, Lymiemomster, holo100, Hibee


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer