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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/9/2010 8:04 PM (GMT -7)   
I am having a re-emergance of my CNS symptoms. I am having a horrid time with school work as a result. I also keep having to delete and retype as I am doing this post. I am afraid, I mean I am on 20mg of prednisone and 150mg of Imuran what is left to do except raise the prednisone or add another med? I see the rheumy the 8th of next month and just don't know what to do in the meantime. I don't know him very well and am not sure how he will react to me calling and saying I am getting worse. I am having a lot of pain in my right knee too which is odd and my back is really bothering me again. I want to cry but all that would do is give me a migraine. I haven't said anything to hubby because I don't want him to worry too much but I am worried myself. I am failing one of my classes and am behind in another. I have never failed a class unless I just didn't do the work. Plus I have an assignment due the 11th and I haven't figured out how to do it since I can't focus long enough to read the chapters I need to read. I can't focus and that is the really scary part. It takes me 20 minutes to read a paragraph that should take 1-2. I just need someone to understand what it is like to suddenly feel the one thing you have going for you slipping away. I need someone to tell me that this can be fixed because it scares me. Plus I still haven't heard from the hemetologist about my blood test results. I find that scary. So many things are happening and something is wrong with me. So many little things started happening all at once and it is making me feel stress like I shouldn't be feeling. Plus I keep getting sick again. I don't understand it I went so long without a cold and now I keep running a fever and my sinuses keep acting up. I know it is the lupus. I am sorry to complain so much I know there are others in worse shape than I am and dealing with worse stuff it is just that my brain is the only good thing I have ever had and I feel like I am losing it.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/9/2010 8:23 PM (GMT -7)   
((((( Redrose ))))) I am so sorry you are having these scary symptoms. This disease can be very frightening, hopefully they will turn out to be nothing serious. I couldn't imagine being in school and dealing with lupus, it's hard enough for me to work 32 hours a week. I will be praying for you. Please let us know when you hear from the hematologist. Take care my friend.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 2/9/2010 9:03 PM (GMT -7)   
When my brain got like that is when my rheumy switched me to Cellcept and it really turned out to be a wonder drug as far as bringing back a reasonable level of cognition.

If you are getting a lot worse then don't hesitate to call that doctor! No sense in risking permanent injury just because you were afraid to ask -- it isn't worth it!

Hope things get better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/9/2010 10:40 PM (GMT -7)   
Thanks. I will call tomorrow. I am also trying to write a book that would be part of a major series and this is interfering with that as well. I may have to drop out this semester but I got lucky I don't actually need any of the classes to graduate so it wouldn't matter. I just hate to do it if I can avoid it.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 2/10/2010 5:21 AM (GMT -7)   
Hey redrose! I am so sorry you are going through this! Don't have any advice expect please call your rhuemy today and that I will be praying for you!

Let us know what your rhuemy says!!

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 2/10/2010 2:21 PM (GMT -7)   
Hi Redrose,
I sure hope your rheumy can give you something to help. Let us know what you find out and keep us updated. You are in my thoughts and prayers.

Love, Babs

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/10/2010 2:34 PM (GMT -7)   
My rheumy wants to double my prednisone for now and have me call him Friday. I just don't think I can drive myself to his office and hubby can't get the time off to take me before our appointment the 8th. I think my problems are scaring him. I may lose a rheumy because I am so complicated.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/13/2010 2:18 PM (GMT -7)   
I called the rheumy yesterday and since I am slightly improved but not fully he wants me to continue on 40mg of prednisone and call him Wednesday morning. If I am not better by Wednesday I think I will have to have an appointment because it means the prednisone is not going to be enough.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 2/13/2010 4:47 PM (GMT -7)   
Thanks for the update Rose! Sorry you still arn't back all the way but glad you are a little better! Keep us updated??? Your in my thoughts!!

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 2/14/2010 11:55 AM (GMT -7)   

Dear Red,

Just some homework advice from a teacheryeah Please talk to each of your instructors privately. Share your lupus dx and your medication(s) with them if you feel comfortable doing so. They will respect your privacy, and I am sure they have some of the same concerns about your coursework as you do. We notice when our students are struggling. It can't hurt to ask about make up work or extended deadlines. I know what you mean about brain fog and reading. Could you make a list of what you need to do in priority order? By deadline or seriousness? Then chunk your work into more manageable segments. I found it is very helpful to write outlines and sticky notes to myself. When I am struggling to read and process what I am reading, I take notes for myself. They help me review later, too.  And let go what you can. At least for now. If you are struggling in more than one course, maybe dropping one for now would be a good idea, a drop is way better than an F in your permanent record and GPA. Or asking one of your professors about an Incomplete, doing the coursework in the summer, or when you are feeling better. Sometimes the grading policies are completely up to the instructor. I share openly with my employer and coworkers about my lupus dx. When I am struggling to stay upright, or keep slamming into doorways, I worry someone will think I am drunk or under the influence of illicit drugs. As a nurse, narcotic abuse allegations are taken extra seriously because of our free access to controlled medications. Only share what you are comfortable with. But please don't hesitate to ask for some extra help. Teachers like to give it.

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.

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