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Does anyone else feel like this?

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Lupus
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Posted 5/28/2009 5:51 PM (GMT 0)
Hi everyone, about 1 month ago I was diagnosed with SLE, Sjogrens, Hashimotos thyroiditis, inflammatory arthritis and scoliosis. I am wondering if that is all that is going on. I know that I need to be DXd by a MD, but I am wondering if many of you have some of the same symptoms and if so, how you treat them. In addition to my + ANA, sun sensitivitym joint and muscle pain, mouth and nose ulcers, fatigue, hairloss, malar rash on face, various rashes all over my body, chest pain and numbness and tingling in hands and feet. I have now developed some new symptoms and I am just curious if this is par for the course or is something more going on possibly. For about six weeks now, I have begun to feel more and more weakness in my arms and legs...I have seen a physical therapist and she indicated that all of my proximal muscles are extremely weak. Additionaly, I keep falling down. It is always my right leg that seems to be staying behind me when I fall. I get really dizzy, not causing me to fall, but sometimes I am so dizzy and lightheaded that I get nauseous. There are days that I can not turn my ignition key in my car. I have always been right hand dominant, and now I am so weak on that side that my left hand is actually stronger. My memory is crap...I know what I want to say...but have a hard time retrieving the word from my brain to my mouth. It's weird...I'm thinking the right word, bu something else actually comes out. My mind is so cluttered...like I can't think straight. My numbness and tingling is getting worse in my hands. Ihave always been intolerant of cold weather, but now the heat just makes me feel as though I need to sit down or I might pass out. Does anyone else feel this way? Thank you so much for your replys,
Diana
Posted 5/28/2009 7:19 PM (GMT 0)
You were diagnosed, but not by a medical doctor?

These are common symptoms of lupus, but could also be complications from arthritis and scoliosis. I would strongly suggest visiting a rheumotologist -- that's the fellow that is the expert in arthritis & SLE. The MD will be able to fully diagnosis and treat you condition(s).

We all have experienced the symptoms you describe at one time or another....again, that may or may not mean it's Lupus, we don't try to dx online.

See a rheumy! :-)
Posted 5/28/2009 7:40 PM (GMT 0)
Thank you Lynnwood. I do have a rheumy. The rheumy dxd me about a month ago with the sle, sjogrens, hashimotos and arthritis and scoliosis...I see her again on June 3rd...the falling down 6 times in the past 5weeks and more weakness and dizzy spells and brain fog is new and the numbness and tingly sensation is more so now than before. I was just wondering if these are additional symptoms I have to look forward too now...or might something else be going on. I'm very fearful I am going to seriously injur myself if I keep falling. Three times I have fallen on the asphalt and tore my hands and legs up.
Posted 5/28/2009 11:22 PM (GMT 0)
hi diana ... sometimes all this stuff gets a bit over whelming!
about the falling maybe try be aware of your surrounds (avoid obviously dangerous stuff) i always plan my path ... remember to take it easy, wear extra padding? and i only wear flat shoes. most important try not injure yourself on these spills. (hard when you fall and the left wrist is OOO and the right elbow is also OOO what do you use your nose?) sorry that was a joke hubby & i were making the other day. (OOO = Out Of Order)
i suspect my dizzyness etc is from ear issues - but i need to investigate, also have other stuff going on needing investigation.

just bear in mind that it is v.difficult 'labeling symptoms' ... as Lynwood said we all get symptoms ... but they are from various factors ... SLE is a complex disease with a number of 'sub-sets' ... but discuss ALL your symptoms with your rheumy, ask him to explain, but you'll probably have to push for information.
hang in there!
Posted 5/29/2009 1:32 AM (GMT 0)
Hi Mom . . .sorry you are having SO much trouble. Sounds really scary. I wonder if the muscle weakness might be polymyositis. The doctor should at least run some bloodwork to help rule out pm. There is a member named Bsime who has MCTD which includes the polymyositis. Hopefully he can give you some direction. I'm glad your appointment is real soon. Keep us posted! Blessings!
Posted 5/29/2009 8:32 AM (GMT 0)

Diana,

                Yep I have all of those too!  I am currently trying to get a dx.  Last summer I thought it was just "clumsy".  Now I know better, but then I was on a concrete yard at the warehouse that I am a mgr in, checking a trailer- the kind that you see on the interstate being hauled by a semi- so pretty high up.   (I was inside the trailer) and I was reaching for something that was over my head and woops!  Not only did I fall right out of it I grabbed the bar on the side and swung around and flew into the trailer next to it before landing on the ground!  I fall so much that when I come on off the yard my team members just shake their heads.  

           I can tell you that these people on here are GREAT- I wouldn't have made it this far if it wasn't for their support and advice.  They have taught me a couple of  things that have changed my life: 

Don't be afraid to ask any question you have on your mind no matter how odd it might seem- if its important to you it should be important to your doc

Get a doctor or doctors that you trust because it makes all the difference.

Push for whatever you need and don't give up until you get it.  Your health is too important to be timid.

          I will keep you in my thoughts! 

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