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    Old 09-30-2006, 01:41 AM   #1
    no1sy's Avatar
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    Unhappy I Just Want To Get Back To My Old Self

    hi all

    ive had two MRI one with blue dye but both were normal

    loads of blood test one come back as folic acid was low so got told by neuro to take vitams

    then he orderd some move bloods ANA slighty postive 1:80 so low

    last week had a spinal tap waiting for results

    but heres are my syptoms

    Extreme fatigue

    Swollen glands

    muscle pain

    Painful joints knee shoulder elbow

    low back ache in tailbone pushing sensation not pain but hard to go to sleep because felt uncomfortable

    right leg felt swollen and heavy couldn't bend toes and toes sometimes go red

    little finger and finger next to it felt tight could bend but felt swollen as well but was not swollen

    leg and arm had ear ache like pain dull aching

    face and body pricking burning sensation and itchy

    was walking in town one time just before xmas and i thought i wet my self because i got a warm sensation on the back of my right leg

    need to go to the wee a lot sometimes

    Constipation but felt like i had upset stomach at the same time

    had stiffness right side of body mostly in the morning and if i sit or stand sometimes cant sleep on my right side because i get pins and needles

    balance is bad if i walk down a hall way or if two people are each side of me well that's when i notice mostly and my knee felt like it would lock my right foot drags as i walk all the time

    had times were is was hard to swallow that was just before xmas not ever had that again

    dizzy spells like my blood pressure is low and gone to bed and shut my eyes and felt like the rooms whooshing past me had to sit up and then it went

    had tremors in my right arm when doing things like makeing tea muscles in my leg and arm have contractions and it hurts after like if I've been down the gym

    skin feels like its been sun burnt on my neck

    muscle feels stiff on the right side of my lower back

    my head twitches and neck and eyebrows had it so bad that one time stopped me from sitting still and affected my talking and walking

    had a sensation if insects crawling over me

    And before all this started in November i had a kidney infection but i didn't know i did until i had flu like symptoms was bad then i had black outs only three times the 1st time didn't even now i blacked out paul grabbed me the other two times i felt it coming but then for a week after that had dizzy spells but didn't black out then all the other symptoms started

    jerky arm and knee and back when bending

    one time i went to my mums she lives half a hour away when i got there i couldn't lift my arm it felt like if my shoulder was stuck
    and it hurt like if i had pulled my shoulder muscle went by the next day

    cramp in right hand and foot

    feel sicky

    headaches but dull from when i wake from bed at night

    never been a big eater if i eat a lot it makes me feel ill and really tired

    a lot of involuntary movement in leg and arm head eyebrows

    trouble thinking and memory problems

    shakiness i feel inside

    intense sensation

    feel the cold alot

    blisters on finger come and go

    rash on palms and forarms


    weight loss

    emotional stress but only cos i dont feel well

    Shaking when performing fine movements
    Slurred speech

    overshooting limb movements

    Slowness with arm sometimes
    my neuro has no idear but getting a second opinion

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    Old 09-30-2006, 04:29 AM   #2
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    Re: I Just Want To Get Back To My Old Self

    Hi & welcome! There are "sticky posts" ( = permanent posts) at the top of the Board with basic info that may be of real help to you:
    1. The one with diagnostic criteria for systemic lupus. Meeting FOUR criteria in your life (not necessarily all at once) supports a Dx. (FYI, there are milder forms of lupus, for which a person can be Dx'ed based on LESS than "4".)
    2. The one with diagnostic criteria for ANTIPHOSPHOLIPID SYNDROME, which is a blood clotting disorder seen in many lupus patients.
    3. The one with the words "test results" in the title. In one of the msgs. there's a link to a resource in which you can find info on the various SPECIALIZED TESTS that are typically run if lupus is suspected.
    4. The SEARCH BOX above is also useful.

    Have you seen a rheumatologist? Maybe if your neurologist finds nothing "diagnostic" in your spinal tap results, you can politely inquire about tests for the vrs. diseases in which ANA can be positive: lupus, RA, scleroderma, etc. (But FYI, ANA can sometimes be positive simply due to a passing virus or to a family tendency.) Because it's positive for vrs. reasons, ANA doesn't create a DX; instead it suggests that OTHER more specialized tests may be warranted [see the "sticky post" on tests]

    QUESTION: did you take an antibiotic for your kidney infection? Just curious, as there is a form of lupus called DRUG-INDUCED...

    I hope you post more after reading these "sticky posts". If nothing else, people here can really understand how it feels to have so many things off, when logic is starting to tell you there must be some answer that addresses all or most of them. Bye for now. Sincerely, Vee

    Old 09-30-2006, 06:59 AM   #3
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    Re: I Just Want To Get Back To My Old Self

    ((((((hugs))))) to you! It is a rough road you are going down. I have SLE and heve experienced several of the things you mentioned. I was suprised to read of the warm feeling on your leg making you wonder if you had wet yourself.....had that feeling myself once, but was so embarassed I never told a soul until today. I also know that having a UTI, which can come on slowly and unoticeable at first, can make you have great urgency to go. I had an appt. with a neurologist last Thurs. He said something you may find interesting. He asked me, "when do you think you first began to experience the signs of Lupus", I told him the first I could remember was when I was 5 yrs. old. explained the incident to him, and he asked me to give him a complete health history from that point on. I did, it contained various seemingly unconnected oddball incidents. When I finished he said that whenever anyone had so many problems healthwise and that they appear so diverse in nature that "there is always a unifying diagnosis to be found", in other words, there is one condition that is causing all of the other problems. So keep investigating until you find your "unifying diagnosis"! I too, have tremors,shaky limbs and muscle difficulties. It is caused by the lupus, moreover, by having untreated Lupus for so long. I do notice that I experience more of the motion disorders if I am tired, the Neuro said that is common. A rheumatologist is your best bet for getting Lupus ruled in or out as a diagnosis. That is the kind of Dr. who Dx'd me. Hang in there!

    Old 09-30-2006, 02:15 PM   #4
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    Re: I Just Want To Get Back To My Old Self

    Hi, NoIsy, Realisticchic's comments about a "unifying diagnosis" really sums it all up. I was in my mid-40's () when a gastroenterologist suggested that I should be seeking that, and his phrase was "single bullet theory". I also had problems back to early childhood.... Who knew???! Aaaargh...

    I hope you check in next week with updates. Hang in there---we're rooting for you! Vee

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