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New Information from Rheumy...AAARRRGGGHHHHHH

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Posted 6/3/2009 11:58 PM (GMT 0)
Hi everyone,
I just got home from my rheumy and am feeling pretty down. She received feedback from my physical therapist that my proximal muscles are very weak and that my right side of my body is predominately weaker than my left. Tyically, my right side is my strong side. Also that I have been having multiple falls.
She told me that Lupus at times can affect your brain. Which may be causing me to have mini strokes. Is that really possible? Has anyone else heard of this?
Her treatment plan is to start me on Plaquenil...she explained to me that it could take 3-6 weeks to even start noticing a difference and it will take up to 6 months to get full effects from the Plaquenil. She stated that in six weeks I am to follow up with her and that if my symptoms have not changed at all then she will be switching me to Imuran.
I have also been started on Restasis and Cellebrex. She said that if I have an event or small time frame in which I needed to feel better quickly...graduation, vacation...go ahead and use the Prednisone as long as it is shorter than two weeks.
I'm glad to finally have gotten the Dxs of Lupus, Sjogrens, hashimotos thyroiditis, inflammatory arthritis and scoliosis, but this stroke thing is scary!!! She said that she will do an MRI my next visit if the medication doesn't start to improve my symptoms and I keep falling down. She suggested I use a hiking stick when I am walking...I am toooo young to be carrying a cane.
I don't know if this makes any sense to anyone...but she closed things by saying how good I look for being as sick as I am. Does she have any idea how much work goes into looking half way decent just to try and make myself feel better. I just find it frustrating because I know that is how lpeople/family view me..."You look good" so how can you be sick!
Thanks for letting me vent. I'm sorry.
Diana
Posted 6/4/2009 2:45 AM (GMT 0)
Hi Diana,

You didn't mention that she was referring you to a neurologist. I would definitely recommend seeing one as CNS symptoms are really nothing to mess around with. I would suspect that you need to get a full neurological workup including an MRI especially if you or/and your doc are suspecting mini strokes or TIAs. I'm surprised she doesn't recommend getting an MRI now. You would think she would need a baseline MRI before you get treatment. I'm not a doctor though but you may want to consult with a Neuro IMO. I may be overreacting though, but when I hear "stroke", alarm bells go off.

Please keep us updated.
Posted 6/4/2009 5:23 AM (GMT 0)
I say see a neurologist ASAP I have CNS involvement and we would never have known for sure if I hadn't seen one. Also CNS involvement is serious and if it is causing strokes even mini strokes you need treatment right away before serious damage is done. Plaquenil alone does not treat CNS involvement. For me it took adding Imuran at a higher dose and prednisone to get things under control and I came darned close to cytotoxin therapy. CNS involvement is serious and can kill if untreated or do damage that you do not want done. I am sorry but I would seriously question someone who said wait 6 weeks and see if plaquenil alone can manage this and who doesn't say see a neurologist ASAP. If you do see a neurologist make sure they know cns lupus because it is important that they understand what they are looking at. Not all neurologists are familiar with the cns problems lupus can cause. I am not trying to scare you just to make you aware how dangerous this could be so you will be careful with your health.
Posted 6/4/2009 11:55 AM (GMT 0)
Oh Diana, I'm truly sorry you feel so bad shakehead  . I've read about strokes with the Lupus, but have not experienced that myself. I'm sorry to hear you are. I get what you are saying about primping to feel good. I used to sell Mary Kay products and try my best to look healthy and pretty. Now, I REALLY work hard at it, because I feel like crap at times. My eyes get puffy. Yesterday, my face was beat red and presently i am not in a flair! It takes so much more time and energy. Then there is the hiding of the swelling everywhere from meds. Have you read the spoon theory? It's great! It helps me when I feel like crap. Bless you dear girl as you deal with so very much. Tammy

Posted 6/4/2009 4:00 PM (GMT 0)
While trying to look our best is usually a good thing, the general consensus here in the past has been to NOT do much when seeing our doctors. Better to let them see the red face, etc than to hide it under makeup. Of course, we always go with clean & brushed hair, clothes, etc.

sorry, friends came in, gotta run
Posted 6/4/2009 5:01 PM (GMT 0)
((((( Diana ))))) I agree with the others about seeing a Neuro, I think you will feel better after seeing a specialist! I also agree with Lynnwood , I know it makes us feel better when we look good but sometimes it hides things the doctor may need to see.

I know all of this is scary, hang in there and try to get in to see the specialist soon. In the meantime, vent here all you want! We are here for you.

I do hope you get some answers soon and I pray the plaquenil works well for you. Be sure to take it with food, it will minimize the side effects. Did your rheumy mention seeing an eye doctor before you start taking it? It is important to have a baseline opthamology exam and a test called a "visual field test" as one of the extremely rare side effects from plaquenil affects the eyes. It is very rare and with normal eye exams by an opthamologist not an optometrist the side effect would show up before any damage occurs.
Posted 6/4/2009 6:01 PM (GMT 0)
Thank you all for your advice...I'm going to place a call today to my rheumy about a referal to a neuro. Stacie, I did see the eye doc already...I actually have been having to see a retina specialist for the past 4 years due to deposits I have already on my retinas. My rheumy did explain the side effects of the Plaquenil and the eyes. Thank you everyone for your support, it truely means everything to me!
Diana
Posted 6/5/2009 12:45 AM (GMT 0)
Hi mom of 5, So sorry. Oh dear. . . . That really is scary. Has your previous bloodwork included testing for antiphospholipid anti cardiolipin - antibodies that cause thick, sticky blood in lupans. I would NOT wait for more falls or a stroke or a mini-stroke. If you don't have copies of your bloodwork, ask your doctor's office if they have done these tests and then ask if the values are within normal. Sorry to be so blunt . . . but this is really important and it shouldn't wait for six weeks. Also . . . we suggest in the Lupus Resources thread NOT to wear ANY makeup for doctor's appointments. The doctors really need to see our bare skin at every visit. We cover up some helpful clues even when we use a moisturizer. I know it is hard to go out w/o any lipstick or makeup . . . but are helping our doctors to be able to properly diagnose. Sorry if this is repetitious of other posts . . . I didn't have time to read the responses above. Blessings!
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