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Thread: Has anyone ever experienced anything like this?

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    Default Has anyone ever experienced anything like this?

    I have SLE, history of ITP, antiphospholipid anti-bodies. I am on plaquenil and diclofinac. I have been having a really strange symptom. About a month ago, I had a really bad headache and the right side of my face and tongue were numb for a week. Then about a week later I was listening to loud music and my brain was tingling and my face went numb (whole face.) Then, a few days later my legs went numb. I could still feel temperature but not pressure and they were even more prickly when I moved them. That lasted for a few days, then a few days later I awoke to find my entire body prickly like I was under general anesthesia. This lasted for 5 days. I went to the hospital, they looked at me like I was crazy. I could not feel my legs and even my forehead had lost much sensation. I could feel the temperature of a drink going down my throat, but not the drink itself. After several days, I regained my feeling and I started feeling about 90% of my sensation again. Then I started flaring , fever, aches, malar rash and I awoke to find only the back side (the heel area) of my right foot totally numb. Anxiously awaiting neurology appointment december 3rd.

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    Do you have a rheumatologist? If so, contact him/her immediately. You could be experiencing TIAs ( transient ischemic attack) especially since you mention that you have
    antiphospholipid anit-bodies.

    A transient ischemic attack (TIA) is a transient stroke that often lasts only a few minutes. It occurs when the blood supply to part of the brain is briefly interrupted. TIA symptoms, which usually occur suddenly, are similar to those of stroke, but do not last as long as a stroke. Most symptoms of a TIA disappear within an hour, although they may persist for up to 24 hours.

    Symptoms can include, but not be limited to:
    * numbness or weakness in the face, arm, or leg, especially on one side of the body
    * confusion or difficulty in talking or understanding speech
    * trouble seeing in one or both eyes
    * difficulty with walking
    dizziness
    * loss of balance and coordination

    Antiphosholipid syndrome causes sticky blood and/or clots. The symptoms of this syndrome includes TIA's:
    Headache or migraine
    visual problems (optic nerve swelling, 'optic neuritis')
    Clots e.g. deep vein thrombosis (‘DVT’)
    ***Strokes or TIA's
    Memory loss
    Seizures, ‘multiple sclerosis’ features
    In pregnancy, recurrent pregnancy loss (miscarraige)
    Skin - Cold Circulation (livedo reticulitis- a webbed pattern on the legs and/or arms)

    Contact your doctor immediately, you may need to be put on blood thinners ASAP.
    Please let us know how you are and what you and your doctor have decided.

    Peace and Blessings
    Saysusie
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    bluecoffey

    Wow, you need to get to the doctor ASAP. Any symptoms like you listed there should be taken very seriously and delt with right away.

    Please let us know how you made out at the doctors.
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    i used to have that problem all the time. My doctors thought it was more of a panic attack. I didnt agree because I did not panic until I could not control my body but I guess all that they saw by the time I would get to the doctor or hospital was a panicked person. They told me part was due to my migraine and also asthma. Ofcourse now they lumped it under the lupus umbrella. This was the problem that kept me going to the doctor and eventually led to my lupus diagnosis because I could nt felel my legs I learned how to control the panic so that is not how I appeared to them. I was tripping and falling everywhere because i couldnt really tell if my feet were being lifted and hitting the ground. I now have to watch my feet as I walk because the lupus diagnosis hasnt helped the doctors to ay more attention to me and the rheumy doesnt pay much attention either since my meds are starting to help. I hope that you do get a straight answer about what is going on with you and I know that it is scary, I actually passed out one night after getting this feeling. Hurry and go to the doctor but try not to be panicky when you do or you will get the ole anxiety meds. I also Hope you have better medical team than I do. Good luck

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    Yeah my Rheumy isn't sure it's lupus related. She thinks if it was a bloodclot that I would only exhibit symptoms unilaterally. I have an MRI next week and a Neurology appointment December 3rd. Feeling 95% better today in terms of paresthesia (numbness) but still aching and flaring as usual.

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    Good luck blue,

    keep ya in my thoughts, let us know how things go.
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    Still nothing. Still waiting on neuro. MY ACL-ab IGG was 38 and my ACL-ab IGM was 49 and b2 glycoprotien was 20. Sed rate was only 22. I am still suffering with loss of sensation. MRI was normal, waiting on more tests.

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    :shock:

    Hugs bluecoffey

    What is your doctor saying they think it is?

    Keeping you in my thoughts and prayers.
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    They are testing me for some NMO antibodies. Other then that, they are clueless.

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    I'm sorry that you have no more information to go on than that. Hugs to ya, your last nerve must be cooked from worry.

    How are you feeling over all?
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