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Leigh Anne Johnson
09-05-2006, 11:41 PM
:lol: I want you all to know that Thanks to ABC- GMA. I now Know what Lupus is. When the Girl started speaking about her symptoms I started to cry I hadn't ever come across anyone who had ever understood what I have been going through Until then.
I haven't been diagnosed yet but its only a matter of time. I have visited many doctors over the years with a multitude of symptoms and no answers just more concerns. I Am So fed up with being told its in my head, my head could bust :crazyeyes: . None of my symptoms appeared at the same time but one behind the other. But I have had almost every symptom, I have read about at some time or another. But even some of those I didn't know were related to something abnormal, like mouth sores I thought a lot of people have mouth sores. And sleep problems, memory problems, ear ringing, joint pain. I just figured I have premature arthritis and take ibuprofen like its candy. The joint pain has not really been a problem until the last three months or so. My main concern has been the itching in my hands and feet , migraines, Neurological disturbances, dizziness and chest fluttering. Whats Sad is that out of three Md's, two Neurologist, multiple ER Doctors, Four Peds Doctors, two Hematologists all kinds of test and the list could go on for ten more lines. No one ever said Lupus. My Great grandmother had scleredema (Spelling ??) and I have two cousins with MS and one has Lupus. Oh And I have a documented 18 min bleed time with no reason. You would think someone might have told me but it is not a talked about disease. I bet the GMA broadcast adds 50,000 + new diagnoses alone. I Am Glad YALL are here!!! I will Let everyone know what happens when I finally get my diagnoses. Thanks so much for just being so verbal about this or I would still be wondering, Am I nuts!!!

ButterflyRN
09-06-2006, 03:44 AM
Welcome to our family! You will find that there are so many of us that can relate with you. We all share our ups and downs with each other and everyone gives each other wonderful support. I think you'll find this site wonderful with many caring individuals. :lol:

dizzy
09-06-2006, 09:59 AM
hi there
i found your post really interesting. i have been having seizures for almost ten years, have suffered from horrendous headaches and memory loss for the same ammount of time, i did have some numbness in my fingers and lost of grip but my gp put thhat down to a side effect from the seizures, then, as i said in my last post in february i developed a rash, terrible tiredness, aching joints and muscles to the point where i can barely walk some days, i had blood tests and on one occasion was in the hospital for over an hour while they tried to stop the bleeding after a blood test, my bp fluctuates so some days its so high i stand up and throw up and other days its so low i stand up and pass out, i have just started to get tinitus - about two months ago i was in so much pain all i could do was lay in bed and literally scream, my husband carried me to the casualty department of our local hospital where they diagnosed "facial rash" and gave me a piriton tablet - i dont know if you all get those in the US but they are for treating hay fever, my temperature was over 103 my bp was so low they couldnt get a reading, and when they took blood they couldnt stop it bleeding, i bled all over the floor and still they just said hay fever and sent me home. my gp wanted to treat the rash but didnt think any of the other things were connected to the rash, i think he thought i was imagining it all, ironically for ten years i have been told that my "condition" was purely stress related because i live with a disabled husband who i care for.. most of the stress only came when i was trying to explain what was wrong with me... finally a stand in GP sent me to see a skin specialist, even though he actually thought i was creating the rash myslef in my sleep - after some more tests and skin biopsies - i finally went back two weeks ago and was told "i think this is lupus!" i am waiting now for the rhumatologist to prescribe something more than the painkillers i am living on at the moment so that i can try to get some semblence of order back into my life, unfortunatley my family dont really seem to understand what i am going through but i am sure they will get there eventually ... all i can say is persevere eventually someone will be able to help you - and good luck :D

Leigh Anne Johnson
09-06-2006, 01:57 PM
Well, in my attempt to find an answer to all of my symptoms, on Monday I started getting copies of all of my medical records, xrays, MRI's lab tests ext... I went to my near by Hospital today and got my records and to my complete shock, from back in Feb 2005, when the last Neurologist sent me for testing. The Radiologists report said and I quote
"NON SPECIFIC SINGLE FOCUS OF THE RIGHT OCCIPITAL LOBE. CONSIDERING THE PATIENTS GENDER AND AGE AND SYMPTOMS, THIS COULD BE VERY EARLY MULTIPLE SCLEROSIS ALTHOUGH THERE ARE NOT MULTIPLE LESIONS. CONCIDER DELAYED FOLLOW UP. FINDINGS: POSSIBLE MULTIPLE SCLEROSIS."
Now I am sure you will all agree with me, If it walks like a duck, talks like a duck and looks like a baby duck, ITS A BLEEPING DUCK!!! :shock: With the physical evidence and family history, How that Neurologist looked me in the face while my cheek was jerking and told me that I was having panic attacks and my symptoms we caused by stress is beyond me. He told me it was all in my head, when he had physical evidence to suggest otherwise and said that I didn't need to come back despite what the Radiologist said. Why would anyone chose the ghost as the answer over a physical abnormality as the problem??? It should be a crime to tell a patient half of the story and only what you want them to know. I have learned a valuable lesson today. Never! ever! believe what your doctor tells you alone, look at the tests and reports for yourself!!! and always get further opinions. I am so Mad that is over a whole year I could have been getting treatment to prevent further possible brain damage. :mad: Sorry to all! I just had to vent to someone who would understand my frustration. Thanks

MARYCAIN
09-06-2006, 04:44 PM
Doctors often have information they don't share with the patient, even though we are the ones whose lives are being directly affected. That's why I think it's important to always get copies of your medical records.

That being said, doctors usually go through a process called differential diagnosis, where they list all the most likely causes for your symptoms, then systematicalky rule them out, or in. Thus, your medical records may show several possible diagnoses your doctor has never even mentioned to you. It can be very scary and upsetting when you run across something like this in your medical records, but usually it means that the doctor has considered the diagnosis and ruled it out. A single non-specific brain lesion could indicate a number of medical conditions including MS. "non-specific" means just that - the lesion doesn't have any of the specific characteristics of a particular disease.

I would certainly discuss this with the doctor,and let him know that you want to be an active partner in your own health care. Ask him if he considered MS as a diagnosis, and how he ruled it out.

Leigh Anne Johnson
09-07-2006, 12:49 AM
Thanks! ButterflyRN, Marycain and Dizzy for sharing your thoughts and welcoming me to the forum. I have an Apt on Monday with a new Neurologist And an Apt with UAB genetics on the twentieth but the Rheumy couldn't get me in, until Oct the 10th or so. They said they would call me back with a work in that week. I have collected all of my medical record back to when I was nine years old. And am working on putting them in chronological order and tabbing the symptoms so that these doctors won't have any trouble seeing what I see and diagnosing me. I mean its not than I want to have this disease or any other for that matter, but any relief from this pain and fatigue would be great!!! And for a Doctor to look at me with genuine respect and sympathy rather than pity and shame on their face would mean so much to me. I hate being looked at like I am nuts!
Hey There is a lot of things going on with regards to my symptoms and other interesting health issues. I have a documented condition of the blood no name just explanation of Strange rare condition that is complex and detailed if anyone is interested. Hey ButterflyRN I thought you might be interested if you are and RN? I just though that with the wealth of Knowledge you all have combined that maybe yall Know something about my condition and symptoms that I don't maybe some connection to Lupus / Ms or something I don't know about. I believe they are related but don't Know how. I didn't want to post such a long post without permission first. Let me Know, Goodnight to all
P.S. I tried to Make Saphire 19 My log-in name but messed up and then I couldn't change it so does any one know how? Thanks

ButterflyRN
09-07-2006, 05:58 AM
Leigh Anne please post away. We would all love to help try and put some pieces together for you. We all can definately give you insight on your symptoms and what kind of symptoms we have or have had. So we look forward to hearing from you. But remember we are only giving you insight and not telling you what you have or how to be treated. :D

MARYCAIN
09-07-2006, 06:28 AM
Hueytown to be precise, but my folks moved away when I was in high school. I still have an older brother and sister and several nieces and nephews who live scattered around Alabama (Birmingham, Huntsville, Alabaster, etc.) Two of my older brothers and one of my nieces went to Troy State - I always thought that I would probably go there too, but ended up at U.K. instead. One of my nephews is in the Alabama State Assembly - he comes in for a lot of teasing for being a politician.

I miss a lot of things about Alabama, although definitely not the kudzu - is it still trying to take over everything in sight? We visit sometimes, but the days of going to gulf Shores to lie on the beach are definitely over!

Leigh Anne Johnson
09-07-2006, 10:34 AM
Okay! Ladies here goes. I have four children. During my third pregnancy began to feel very bad, not like other pregnancies though. This was like I was dying of the flu (pregnancy&Lupus?). I kept telling the Doctors that something was wrong but they wouldn't listen, they just said every pregnancy is different blah.. blah... blah... Anyhow by my third month I began spilling protein into my urine and started having BP problems. It developed into preeclampsia. I was in and out of the hospital until my sixth month, then it got so bad that I had to stay in bed on my left side 24-7. They diagnosed me with peripartum psychosis because I kept telling them that me and the baby were going to die. I just felt that bad. I had started getting this tickling on my face. Then I was calm and watching GH on ABC and the patient care assistant came in and took my vitals, she said very seriously DO NOT MOVE A MUSCLE!! Ran out screaming, next thing I know I had four Doctors and ten Nurses in my room debating on why I was not stroking. My BP was something like 230/190. They started pumping me full of Magnesium. It protects the brain and other things during a stroke and keeps you from having seizures I guess. Boy does that stuff suck big time, it felt like they were pumping me full of flaming McDonald french frie oil. :onfire: It burned sooooo bad! Anyhow the next morning I woke up with a paralysis of the right side of my face and no feeling and weakness in my right arm. They sent me for MRI and other tests they said that I did not have a stroke or seizure. They diagnosed me with Bells Palsy and put me on Prednisone. After that they decided that I needed to go to UAB(University of Alabama at Birmingham) because I was getting frantic for them to do something. I felt like my body was shutting down, and in fact it kinda was. When I got to UAB they confirmed peripartum psychosis. and induced my labor @34 weeks. No one ever considered that I might be right about how sick I really was. My son was born with an ab-gar of 1 and a platelet count of 6000 per ml of blood. At first they said he had low platelet because of the preeclampsia. But after three days of giving him platelets and he couldn't keep them, they called in a Hemo from Children's. And guess what? I had maternal fetal antibodies that were attacking his platelets. I was born with a rare autosomal condition of negative platelets. I am missing proteins on my platelets that everyone else has. When there was an exchange of plasma between me and the baby through the umbilical cord. My body built antibodies to kill the proteins on his platelets thus killing all of his platelets. Now this is different from Rh negativity, although I am Rh negative also. He is fine now. Anyhow they said it was rare but didn't affect me in anyway. I Know that is BS. I believe that was the problem all along during my pregnancy with him. Anyways about five months after he was born I had a septoplasty and just about bled to death on the table. I went to a two Hematologists and they both couldn't figure out why I have an 18min bleeding time. They said somethings just haven't been discovered yet, and that it had nothing to do with the negative platelets. But some of the proteins that I am missing are involved in coagulation, l looked it up online myself. Whatever... So I have always had joint pain, mouth sores, sensitive skin. When I was little my mom told me it was just growing pains. We were kinda poor and had no Insurance so I didn't go to the doctor unless I was very ill. When I was nine I live with my Aunt in WA. State (same one who's daughter has MS & Lupus). and one day I woke up and couldn't control my body I was limp like a one month old. My Aunt took me to Group-Health, all the doctores could come up with was a mildly low potassium. After a few days I was fine again. Since my first pregnancy I have had migraines and Brain Fog. After my third, all kinds of neurological sensations, muscle pain and a whole bunch of what I thought was fever viruses (KIDS ya-know). I have had a couple of ANA test but all negative. I personally believe that I must have MS and Lupus Like my cousin, and somehow this all started with a virus that we got as kids. I have Heard that there is some speculation of Ms starting as a virus that can progress in cold weather and lies dormant in warm environments. When I had a spinal tap in 2005 the Radiologist told me that. My cousin still live in WA. And I'm here in LA(Al). Weird HUH! Until Aug,31 I had no idea that all of these symptoms were or could be related by Lupus or that my cousin had Lupus. I just Knew she had MS. After I called my grandmother about the GMA on ABC. She told me about the my cousins Lupus and I told her about what I found about how all the autoimmune disease are intertwined and asked her didn't granny have Scleredema. So since last Thursday its like all the pieces are coming together, in this screwed up puzzle. And for those of yall from WA. I lived there off and on through out my life but I've been here for about the last eight years. I bounced back and forth from Mom to dad to Aunt. I went to South Kitsap Schools. Okay girls I've typed your eyes off, So tell me what you think. (Talked your ears off :lol: )

Leigh Anne Johnson
09-07-2006, 11:04 AM
I don't know where Hueytown is what's it close to and did they go to Troy state in Troy or in Dothan. Cause despite my terrible grammar and spelling I got my degree in English @ TSUD. The piece of paper they gave me in that decorative folder, that is worthless here. It should say Literature not English. I enjoy poetry and researching authors. Also other kinds of research. Anyway same thing with suttle difrences but counts difrently. TSUD didn't offer Lit. major when I got my degree. They want you to have to pay for both degrees. Anyhow when I am through, it will look good on Paper. Yes Gulf shore isn't the same now. Neither is PC. They Have taken away just about all of the public beaches and put up condos in the last year or so. They're trying to mimic Fort Lauderdale and shake the party scene to become a strong snow bird town. :roll: Yes, Kudzu is still out of control every spring we all pass word on a new way to get rid of it. :snipersmile: Somehow I don't think a sniper would work though :lol: But I guess it's worth a shot, he he!

MARYCAIN
09-07-2006, 01:30 PM
About 20-25 miles away although Birmingham has grown so much it's pretty much engulfed the little towns. Both brothers went to main Troy State - niece went to Dothan campus and loved it, even though she got married right out of college and never used her degree. I've been to Dothan several times when younger but honestly don't remember much about the town except a very pretty building downtown, maybe a courthouse.

Leigh Anne Johnson
09-07-2006, 01:54 PM
See, my Grammar is so bad that I had to edit it. Re-read -k-. Who is your niece? I'm not sure about the court house it was ugly before they remodeled it. Are you sure it was in Dothan? Because there aren't many pretty buildings here. But There are in Ozark.

Leigh Anne Johnson
09-07-2006, 02:43 PM
Hey , maybe I'm crazy but I have been reading a lot of different posts and I think Browneyedgirl53 might just be my cousin? :P

Leigh Anne Johnson
09-08-2006, 06:58 PM
Okay, I guess everyone is as stumped as me? No reply about last pregnancy problems and rare blood. I mean I understand that only a doctor can tell me whats wrong, but I still feel better knowing that It's not just me going through this. I just wondered if anyone has had something similar. :| Anyhow My Husband and I took our Kid out to Kids Kastle tonight and then We picked me up my dinner @ Chilies. I love to look at pizza but my butt loves it more than me. When I came out the door, my ankles gave way and my rear followed. :oops: I was so mortified. I wish I had a tape to watch it over and over. Then it might have been worth the embarrassment, cause at least I could laugh too. :lol: Well I hope And Wish everyone a good night and I'll pray for less pain for everyone and maybe some more definitive answers too. Does anyone enjoy poetry?
If so, I'll post good ones that bring encouragement for us all. 8)

browneyedgirl53
09-08-2006, 09:57 PM
HEY CUZ'N :D :D :D :D !!

It's browneyedgirl checking in - I don't know if I would publicly admit to being a relative of mine (smile). As I read through your posts about your symptoms - I wasn't sure if I should smile or cry......I swear you must be my twin. I have had so many of the same symptoms!! It has been a very frustrating time - going through the diagnosis process; symptoms just keep cropping up and doctors keep wanting to say it's STRESS or ANXIETY !! There's a little part of me that wishes they could be in my body for about two months, THEN HAVE THE NERVE to say it's anxiety!!

I agree with you; once you read and hear about others' stories things start connecting - when that light comes on, you say to yourself "I'm not crazy, this stuff is real".

When you shared your story about falling on your backside, it brought back a memory for me; a couple of years ago, my son stopped by for a visit and while we were visiting, I stood up and fell face first into our glass coffee table......boy was that attractive - a piece of glass stuck in my forehead and I'm trying to convince my son everything's fine (just like mommies do!!) Unfortunately, I have a lot of those - I have a terrible sense of balance and occasional double-vision.

Thanks so much for sharing with us; you're a very busy mom with alot on your plate. This will be such a wonderful place for you to share and vent. The folks here are absolutely without a doubt, the MOST caring, thoughtful, nurturing, and encouraging people. We ALL help one another, and thank God that we're all not depressed and hurting at the same time..... :lol: you will find great comfort in sharing here. It's great to have you on board !!

Much love,
Browneyedgirl

p.s. NOW ABOUT THAT BEING RELATED REMARK !!!!! :lol: :lol: :lol:
I have relatives that did live on the Kitsap Peninsula - and my father (whom I never met) lived in Biloxi and Alabama !! So ?????????

Leigh Anne Johnson
09-09-2006, 02:32 AM
Well, I guess your not my cousin, but that's okay we can still pretend my cousin still lives in Kitsap Co. and she lives with both of her birth parents.
Thanks so much we can chat later I have to go to work.

Leigh Anne Johnson
09-09-2006, 02:55 PM
Hey! Well I guess we aren't really cousins, but we can still pretend. My cousin that has Lupus and MS Still lives at home with both of her birth parents because she is disabled now. She has three boys who also live with her and her parents. They live in Port Orchard, that's where I went to school off and on throughout my life. Where did you go to school at? My dad still lives out in Port Orchard in the woods near, O'lala (Spelling?) Well I'm glad that you found my message anyhow, I was kinda curious because, the way you speak, type, reminded me of my cousin. She is very tender and caring and I cant quite put my finger on it but your posts just somehow seemed kinda familiar? Anyway its probably just the Washington dialect. :lol: I work two days a week ten hours a day Sat & Sun, for a large brand name pop company, and three nights a week for a large #1 potato chip company. I don't want to say specifically, I'm not sure about rules on posting Brand TM Labels names and don't want to find out either, but anyhow I worked hard today. My legs Hurt so bad. I once was able to do twice as much as I can now. I'm kinda starting to feel like a GIRL! I was just one of the guys, but now they do more than I do so... I don't know how this is going to work out, but At the rate I am going it wont be far. Well I'll talk to yall later,

Hope is all you want it to be, so close your eye and be free. :smilecolros:

browneyedgirl53
09-09-2006, 04:07 PM
CRYIN' OUT LOUD IN A BUCKET !!!! :shock: :shock: :shock: :shock:

My cousins all lived in Olalla, went to school in Port Orchard. My uncle worked at the ship yards. You're startin' to spook me now !! :wink: just kiddin'!!

Sometimes the heart just knows good people (ha....ha.....ha) - yep, I'm having a fun day today!!

It's great to have you here, Leigh Anne.

Take care,

Much love,
Browneyedgirl

Leigh Anne Johnson
09-09-2006, 05:20 PM
My dad did work at the shipyard for a while and my step monster still does. do doo... do doo... :shock: :lol: :P :)

Angel Oliver
02-28-2009, 01:10 PM
Just to say hello and welcome. I am sending you all gentle hugs and will post when i feel better to these interesting posts. I feel the anger n frustration and rightly so. Ive had recent Doctor problems, but i hope you now get treated properly and for the correct diagnosis.

Love n Hugs to you all
Angel.xxx