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Thread: Not diagnosed yet but if i dont have lupus then i am a crazy person...

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    Default Not diagnosed yet but if i dont have lupus then i am a crazy person...

    Hello! My name is Maegan and i am 26. Everyone thinks i complain too much or i am a hypochondriac but here are my symptoms that ive had scince i was 17 (i wrote them all down so i wouldnt forget!)

    * Ive had a rash for a month. Sarted on my neck and it was blotchy then moved to my hands, arms, feet, legs, and my back. Now they are turning into blisters on my hands and feet. My Dr has no idea what it could be other than scabies. Iput lotion on for that and i have new hives every day so i HIGHLY doubt its scabies!!

    * Shaking hands
    * dizziness
    * tripping over things (its happened a lot over the past week), i even walked over to one table 3 times and tripped in the SAME SPOT 3 TIMES!
    *migranes with auras and temporary blindness
    * forgetfulness (i forget where i put every thing, forget anniversaries, dates, where i put my lunch, people say they have told me things and i dont remember or i tell someone something eleventybillion times already)
    * swollen ankles (could be hypertension?)
    * bloating (could be because i havent been eating healthy)
    *sharp pain in shoulder that feels like someone is stabbing me or it goes numb, siatica pain (i thought the shoulder pain was from a car accident i had in 01 but i went to therapy and everything and they couldnt find anything, i thought the siatica pain was from being pregnant)
    * pain in knees out of nowhere and usually only last a day(again thought it was from my car accident) pains in hands that feel like arthritis (again randomly)
    * anxiety disorder (probably because of the panic attacks or the fact that everyonr thinks im a crazy person!)
    *panic attacks
    * depression
    * tinnitus
    * chest pain and tightness (usually triggers a panic attack shortly after, it feels like i am having a heart attack)
    * hand/arm/feet/leg/lip numbness (lip numbness happened twice this week, new symptom to me!)
    * Extreme fatigue
    * extreme thirst
    *Charley horses in feet and calves
    * nausea
    * confusion (forget why i went into a room ect...its getting bad. i work at an animal shelter and i will forget to give cats food!)
    * bruising easily or just random bruises dont remember getting
    * face redness (looks like that rash, people always ask if i have sunburn)
    * trouble swallowing, its not swollen or anything its like i am telling my throat to swallow and it wont! its weird
    * decreased sex drive (poor bf)
    * mood swings
    * mouth ulcers in my cheeks (didnt think anything of it till i didnt remember biting my lip or anything)
    * troule sleeping and going to sleep. Its lke i am exausted but i can fall asleep!
    * easliy winded ( i walk up 13 steps and i am breathing hard...could be because i smoke though)
    * RLS occassionally. I freakin hate it!
    * Its hard for me to haold my bladder sometimes (i have a 4 year old) but if i jump around or sneeze or cough i have to go right then or a little bit of pee wil come out!) how embarrasing. Also, i needed an emergency c-section because my contractions kept going up and didnt go down so i was crushing him. they had to give me 3 epidurals! I was anemic when i was pregnant also.
    * heartburn/acid reflux (not sure what the difference is)
    * dry nose/ nose bleeds/ bloody snot
    * bladder infections/ URI's (havent had one in awhile thank god!)
    * irregular periods ( i am taking the mini pill. they wouldnt give me a regular pill because i get migranes)
    * muscle twitches pretty much all over but the really annoying one is when it happens in my lip or my eye

    So i sound like i have a buttload of issues huh? yeah, i do! lol. Here is my question...what tests should i ask my dr to give me? I already have an appt to get an ANA. Thanks for reading!
    Last edited by Maegan; 04-04-2010 at 12:31 AM.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Maegan,

    I'm Rob, and I was diagnosed with Systemic Lupus in 2004, and MS 1.5 years ago. That's quite a list of symptoms you have! I don't think you are crazy, nor does it sound like you are a hypochondriac. It sounds like you have some very real symptoms and you need a diagnosis ASAP so you can begin to treat whatever the problem or problems are that are causing you all this. I'm not a Dr., I'm just a guy who tries to give sound practical advice to people who believe they may have Lupus, so what I have to say is only an unprofessional opinion.

    Many of your symptoms could easily be from Lupus, and currently I share or have had many of the symptoms you mention. However, these symptoms could also be caused by some other disease, possibly another autoimmune disorder such as MS, or something else entirely. I think Lupus is one of the best candidates, so I believe you are moving in the right direction by concentrating on that angle.

    As far as what tests to ask for, a good explanation of the lab tests, what they are called, and what they are for can be found at the Lupus Foundation of America webpage on lab tests and there is also an overview of how a diagnosis is made, just click this link-

    www.lupus.org/webmodules/webarticlesnet/templates/new_aboutdiagnosis.aspx?articleid=364&zoneid=15

    Also, if you look at the top of each forum page here on our site, you will see a variety of "sticky" threads that contain a great deal of good info from the Diagnostic Criteria, to practical articles on living with Lupus. Most of the info comes from the LFA site, and is in easy to understand layman terms.

    Lupus can be notoriously difficult to diagnose, as it's symptoms can mimic those of any number of other diseases. Obtaining a diagnosis will take some patience and perserverence on your part. It can be a long and frustrating process, and you may need to seek second, third, or more opinions to get this figured out. Stay focused, trust what your body is telling you, and do not let anyone tell you it's all in your head.

    I wish you luck, and I hope we can help you find the answers you need. Please feel free to ask any questions you may have, as we have a bunch of knowledgeable people here who have many years of combined experience in living with SLE. And once again, welcome to our group!

    Rob
    Moderator
    Last edited by rob; 04-04-2010 at 07:12 AM.

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    Hi Maegan,
    Welcome to WHL, and no, you're not crazy. I also recognize a lot of those symptoms.
    I agree with Rob - it could be Lupus or any number of autoimmune issues. Find a good rheumy, and make sure that they test for all kinds of AI diseases.
    Good luck with this, and come back to chat and to keep us updated.
    Hugs,
    Marla

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    I have uploaded pics of my rash/hives...it doesnt look like anything ive seen related to lupus....but i have never had this rash and its itchy welts or blisters and it itches like CRAZY then it burns!

    here is a link to my pics!

    http://www.flickr.com/photos/3207631...7623647553745/

    Anyone having hives like this?

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Maegan View Post
    I have uploaded pics of my rash/hives...it doesnt look like anything ive seen related to lupus....but i have never had this rash and its itchy welts or blisters and it itches like CRAZY then it burns!

    here is a link to my pics!

    http://www.flickr.com/photos/3207631...7623647553745/

    Anyone having hives like this?
    Yes, I've had a rash exactly like that. They look like huge mosquito bites, and mine just burn and itch like hell. Many people think that without the typical Malar (Butterfly) rash on the face, you cannot have Lupus. Well, in the 6 years since my diagnosis I've never once had a malar rash on my face. Mine are mostly on my feet, thighs, and upper arms. It comes and goes frequently.

    Rob

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    Quote Originally Posted by rob View Post
    Yes, I've had a rash exactly like that. They look like huge mosquito bites, and mine just burn and itch like hell. Many people think that without the typical Malar (Butterfly) rash on the face, you cannot have Lupus. Well, in the 6 years since my diagnosis I've never once had a malar rash on my face. Mine are mostly on my feet, thighs, and upper arms. It comes and goes frequently.

    Rob

    Exactly! i thought they were mosquito bites until someone told me they were hives! haha. My face is red on occasion where the malar rash is supposed to be. i am looking through pics to see if i have one where my face was red!

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    Hi Maegan,
    Welcome to WHL. I don't think you sound crazy at all. Of course, I also share a lot of your symptoms and even though I have a diagnosis that explains a lot of my symptoms, it doesn't explain them all and I too think I have Lupus as well. My doctor thinks I am crazy too but I know I am not. I looked at your pictures of your rashes and hives and boy do I wish I could pass you a bottle of Calomine lotion. You poor thing, you must be itchy all day. I get a lot of unexplained rashes too. There are some pictures on my profile. Most of my rashes last a couple of hours or a couple of days. Like you, I have extremely fair skin and the new rashes are always easy for me to spot. Of course, it seems they are almost never there when I am at the doc, but I have learned to take pictures when they occur and bring them with me to the doctor. My dermatologist and his nurse expect me to bring in new pics when I go and seemed a little disappointed that I didn't have any new rashes to show them last time I went. I used to get hives a few years ago that would seem to form little blisters and I would scratch and make them bleed. I was taking Zyrtec at that time and never had them before Zyrtec went OTC. I went for over 6 mos to different doctors and dermatologists (not the one I have now) and allergy specialists. Nothing that they could find in the bloodwork. They were all mystefied and called it a general Uticaria. I am also Lactose Intolerant and after some research, found out that the OTC Zyrtec binder was now lactose, which made me suspect that I was allergic to my allergy medicine. I brought my concerns to multiple doctors, including the allergist, who all shook their heads and said "silly girl you don't know what are talking about". I even had one dr tell me after 2 seconds of looking at them that I had bedbugs. I told him that if he knew me, he would know that I am a little OCD and a huge germaphobe. I knew I didn't have bedbugs but he blew me off and sent me away. I went home and tore the house apart and of course, no bed bugs. Well after 6 mos of all the bs and itching and with all my research leading to a drug allergy with my Zyrtec, I convinced my allergist to take me off the Zyrtec by showing her the list of allergy symptoms Zyrtec provided, which she really didn't want to do b/c I also have chronic sinusitis that is greatly aggravated whenever my allergies are triggered. Well, after a week, the Uticaria cleared up. Amazing, isn't it? Of course, all the doctors reaction to this was "well you could be right, it could be the zyrtec that caused all that, but we will never know". Anyway, my point in all this, is have any of your medications changed around the time that your rashes and hives started? Even if they went from brand to generic or from perscription to OTC, you might want to check it out too. In the meantime, one thing that I found helped me when I was like that was to take a washclothe and soak it in steaming hot water and apply it to the hives and rashes. I hope you find some answers and are itch free soon.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    well as soon as i get in the shower the hot water makes me itch even more! its bad! It is kind of humorus that you were allergic to your allery meds! I havent taken anything new except for a higher dose of prozac. Anyone have ankle swelling?
    Last edited by Maegan; 04-04-2010 at 09:05 PM.

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    yep. lot's of ankle swelling last year. been good with that lately. it is kind of humorus.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Oh Maegan
    You poor thing. I think I would almost prefer pain to itching.

    You definitely have something major going on, and your symptoms deserve to be taken seriously. I feel so awful for you that at such a young age you have to deal with your body betraying you. I hope you get some clear answers quickly, but, you know we'll be here for you no matter what your doctors do or do not say. With Lupus, you could be waiting a very long time with little or no answers, and feeling very much like giving up and even start to second guess your own ability to know if you are really feeling what you think you're feeling. It's happened pretty much to all of us at one point or another, so, you're in good company.

    If having no answers makes you crazy, then welcome to the looney bin.

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