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  • Have Lupus & having various new & increased existing problems

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    Old 03-16-2007, 05:44 AM   #1
    Join Date: Feb 2004
    Location: NJ
    Posts: 51
    LupieOne HB User
    Question Have Lupus & having various new & increased existing problems

    Hello. Sorry for the lenghty post, but with so many things wrong, I must mention them all for anyone to get a full picture. lol
    I am a 40 year old female who has Lupus-SLE, and...Fibro, OA, APS, Meralgia Paresthecia, Hypertension, Raynauds, Sjogrens, Corneal Erosion Syndrome and various other problems/syndromes/etc.

    I am what's known as 'Negative ANA Lupus' meaning I have never tested ANA pos. for Lupus...BUT a DX was given finally, based on meeting the 'criteria' and the fact of testing APS Pos.-its a pretty common thing to test ANA neg, for those with postive APS and Lupus symptoms.

    I am currently seeing an ENT due to having ear/hearing-tinnitus/balance problems for the past 3 weeks. Went yesterday for the first visit-hearing checks out normal, ears are clear of any signs of infection, fluid, etc-now schedualed for an ENG and some other test on 04-10-07. During exam, doc made me do the 'closed eyes/open eyes' walk a straight line and the marching in place as well. During all-esp. when eyes were closed, I felt like I was falling to the left side-doc noted this as well, as it was apparant to her, and she asked me which way I 'felt' like I was falling-and it was always mostly to the left.
    I have suffered dizziness for a long time, but never this bad-previously tested for Meniere's about 4 years ago-was negative for it-ruled out via several ear/balance tests.
    Also, about 4-5 years ago, my neuro I was seeing then(have since moved too far) I was given an MRI to check for MS lesions, due to symptoms I was having back then-no lesions found, but doc said they could 'show up at a later time' and mentioned its not all that uncommon for a person with SLE to also have MS-have since found that to be true via knowing other 'Lupies'.
    To shorten this, I will post a list of current and ongoing symptoms:


    Unsteadiness-feel like I'm going to fall over-always grabbing onto things.

    Much more fatigued lately-Recent Lupus blood workups show no activity at this time. No energy.

    Pressure in head/right ear


    Noises in right ear-left as well, but much more evident in right ear-varies from high-pitched tones, buzzing, humming.

    Numbness of facial area-right side-temple area-comes and goes.

    Hearing loss R ear-better now, but very apparant last week-again, no signs of ear infection or visable inner-ear problems to the ENT.

    Symptoms I've had for awhile now that 'could' possibly be related:

    Clicking in LEFT ear-been seen by a few ENTs for this-none know what it is-its basically, like a 'beat' to every syllable I speak! Comes and goes, for several years now. The only way to describe it, is to tell someone to put their palm over their ear, then tap with one finger on the back of that hand...THAT'S what I hear in my ear!!!
    Its maddening when its really active! I've been tested for many things by ENTs because of this-its a mystery to them. lol

    Can't handle loud noises or too much background noise.

    Cognitive functions are worsening-garble my words, cna't get words out, can't think of, or remember words, short-term memory getting worse-I know its a symptom of Lupus, but as I said-no current Lupus activity.

    Tingling sensations in arms, legs, hands, feet.

    AND a WEIRD one-when I sneeze, my arms tingle from my shoulders to my fingertips!!! Been happening for a couple years now.

    Another weird to explain, but basically, lets say I have an itch on my abdomen area...I scratch it...and feel strange tingling sensations down my legs!! Usually the leg on the side I scratch, but sometimes both.

    Legs feel 'tired' heavy. Again, a weird one here...but sometimes, when lying in bed, its like I have no idea 'WHERE' a certain body part is at the time!! Itakes me a moment to think about it, figure it out, feel where it my arm for example...I'll be lying there and all of a sudden think..."Is my arm across my abdomen...or not?!" And I have to check to know for sure!!!!

    Eyes: Having lots of 'floaters' lately-more than my usual, and double vision at times.
    Flashing lights if I move my head too fast or even when eyes are closed and I move my head.
    Have one pupil that for years, is larger than the other almost all the time.

    LOTS of muscle spasms and twitching all over body-much more often than usual!

    Sudden shock-like pains in head, limbs, etc-out of the blue, they just hit and then are gone, most annoying ones are in head and behind ears. Sometimes happens just from turning my head...but those feel a bit different. Not quite like sudden shocks, but duller electrical sensations.

    Mentioned the nerve damage in right thigh earlier-old neuro said after tests, that its MP.

    Have to wear wrist braces at night because hands/arms go very tingly, numb-to a painful point-was tested by same neuro for Carpal Tunnel-it was negative. Right hand/arm worse than left, but left is starting up again now.

    Weak bladder-can leak upon coughing, sneezing, laughing too hard and cna't hold urine like I use to be able to. Only leaking but enough to always need to wear shields, just in case. happens at least once or twice a day.

    Nausea-usually when I am real dizzy, but its also happening more often on its own. NOT pregnant-had tubes tied years ago. lol

    Oh just remembered this one too...the Shaking! My hands shake like when holding a book to read, or doing simple tasks, etc.

    IBS symptoms/problems.

    Severe heatburn problems-GERD has been mentioned.

    Lots of pain behind left knee-not in the kneecap area-feels more like muscular pain-been like this for several weeks now-don't think its the OA, because of where it is and type of pain. Should also mention that on this same leg, my calf is markedly bigger than the right one! had doppler and other tests, didn't show anything. I know Cardizem can do that...but it usually affects both legs! Also, for about 4 weeks, a few months back, I had very obvious pitting edema in the same calf and foot! Hense the doppler, which again, was normal findings! Its gone down now, but has come back and gone again now and then. i don't use lots of salt at all and really don't eat salty foods, so cardio doesn't believe its from sodium, because again, it would be both legs affected. Another mystery in my mysterious health saga.

    Oh and another one I remembered-this is taking awhile to remember it all and type it! lol Now I forgot it. lol!! Oh yeah, my voice goes hoarse MANY times a week!! Usually, if I've been talking a lot but sometimes, its just hoarse! Was told year ago, by ENT, that its nodules on my vocal choards from the Lupus. (they always say EVERYTHING is from the LUPUS and its maddening! lol)

    In regards to the Raynauds symptoms...lately, my hands and feet are even colder than normal-which is usually cold! I get cold everywhere!
    Sometimes, its just a quick 'cold feeling' in various parts of my body-out of the blue, some area will just feel cold! Could be a spot on a leg, or abdomen, or anywhere.
    Then, on the opposite side...when its too hot, I cannot get comfortable! It goes from one extreme to the other.

    Sleeping problems-even when totally exhausted, which is OFTEN, i still can't sleep!! Was put on Lunesta, but OMG, had to stop because of the horrible aftertatse side effect!!! YUK! Then tried Ambien-stopped working after about 3 weeks. have to keep getting up at night-just to get up!!

    That's all I can remember now. lol Oh and as far as meds I'm currently on,
    here's the list:

    Plaquenil 200 mgs 2x a day

    Etdolac 500 mgs 2 xs a day

    Cardizem 240 mgs 1x a day

    Elavil 25 mgs 1x a day

    Elavil 50 mgs 1x a day

    Xanax 0.25 mgs 2xs a day-for Anxiety/anxiety attacks

    Flexeril 10 mgs I only take half 1 x a day(5 mgs) due to 10 mgs knocking me out!

    Ultracet for OA pain

    Ecotrin-81 mgs 1 x a day for the APS to thin my blood.

    I should also mention that I was tested 2-3 years ago for CNS Lupus and the MRI showed no signs of that at all.

    Well, so much for shortening this. lol But, its so much to cover to fill people in and with diseases, such as I have, you NEVER KNOW what is from WHAT! lol

    Sooooooo...any opinions on all this? Could the neuro 4 years back be right and MS can't be ruled out because lesions didn't show up back then??? I've heard that lots of people with a DX of MS, first see an ENT because of hearing/ear/Tinnitus problems!!! And, what made me post this here is the fact that I read in archives here at this very site, and others, where several people with MS, spoke of a STRANGE CLICKING SOUND IN ONE EAR!!! Which really caught my eye, because of my unknown and odd ear problem in my left ear!!!

    I hate having to wait for these other ear tests till April 10'th, but that's when they had an opening till then!! Should I, in the meantime, make an appt. with my neuro too!!??

    I appreciate you taking the time to read all this and would appreciate any input here!


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    Old 04-02-2007, 12:05 PM   #2
    sophistikitsch's Avatar
    Join Date: Apr 2007
    Location: DFW, Texas, USA
    Posts: 1
    sophistikitsch HB User
    Re: Have Lupus & having various new & increased existing problems

    Hi, Sorry to hear of your health problems. I found your post by searching "corneal" (because I am at the end of ANOTHER RCE episode and was researching). I read your post and DEFINITELY think you have MS. I have MS too (a second generation MS'r) and know that almost all of your symptoms are characteristic of MS. The only one I am not familiar with being associated with MS is the gerd symptoms. The leg edema I'm unsure about as well. But I also have some of the strange ear noises and also can't have too many loud noises or background noise. I easily reach "sensory overload". I had my confirming MRI one year ago and had NO brain lesions, but lesions on my spine (CNS). I have a relatively mild case, but also experience word find difficulty/garbling words etc. But your nausea, bladder leakage, raynaud's (cold feet, etc) symptoms, etc. are all MS symptoms. The balance, ear sounds/ hearing loss (my mom had some significant hearing loss from her MS) are all MS things as well. About your leg size difference, I have noticed leg size difference in myself that I attribute to my first (and only MAJOR) attack that I had in 1994. I believe I had muscle atrophy from nerve damage in my leg. So I am not sure if your problem is that one leg has gotten smaller, or that the other has gotten larger. If I were you, I would look in the phone book for your local MS society and call them and get their list of recommended MS neuroligists in your area. That is what I did and I have been pleased. If you do indeed get a MS dx, I highly recommend Copaxone injections. I have been on them since oct. 06 and have not had any bad experiences. And best of all, there are no side effects, unlike the interferon med options which can cause flu-like symptoms and depression (who needs that?)
    Interestingly enough, I also have RCE (recurrent Corneal Erosions) and have wondered if my susceptibility is at all related to my MS.
    Take care and let us know how things progress. Definitely make a neuro appt!

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