New Here and Newly diagnosed with SLE Lupus

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sharebear37
New Member


Date Joined Mar 2011
Total Posts : 12
   Posted 3/27/2011 7:00 AM (GMT -6)   
Hello everybody , I am a 37 year old single mom of two teenage boys and have recently been diagnosed with SLE. Well I still have to get the official stamp from the Rheumatologist because I have a negative ANA. My oldest son whom is 17 is a type 1 diabetic , pancreas does not work and is on an insulin pump to live. This confused the doctors at first and diagnosed him a type 2 until he nearly went into a coma from high sugars and was forced to go on insulin. I have been saying for a long time that I felt I had some type of auto immune thing going on due to strange symptoms over the years.

At the age of 24 I became very ill. We all had the chicken pox (my second time) , my kids had the whooping cough the same year and strange things began to happen . I would wake up to one foot being three times the size of the other one. So much to the point of where i had to wear my boyfriends shoe which was a size 13 . They chalked it up to gout , ( i was not a drinker) or had any other indication that I would have gout. Gave me some pills and sent me on my way. I did not feel it was gout and the one pill i did take did not make me feel well so i didn't take them. It went away within a week. I had constant migraines in which they sent me for CT scans and gave me pills. I would ache so bad after going for a walk I would have to jump in a hot tub right after because it felt like my bones were breaking. I had some chest pains so they ordered a routine chest xray. They found three nodules on my lungs. This of course led to a biopsy , then surgery to remove them. Of course their main concern was cancer so the only thing they were tested for was graves disease and cancer. So after that i began to feel better and then i moved north to much dryer climate. I was living on Vancouver island and it is very damp there.

So I went for about six months up north with no troubles to complain of. then one day I couldn't get out of bed , my back was unbelievably sore like it felt like it was broken. I had developed two very large lumps on my back that were described to me as fatty tissue. I was in bed a good two months. No doctor knew why i had them or how to treat them. I finally went to ER in a different town and the doctor froze them and that helped and i got better. Then I had two hernia repairs , many menstrual issues . One thing after another it seemed.

So i move yet again after my son was diagnosed Diabetic to be close to a hospital as the tiny town we lived in only had a clinic and was closed on weekends. After I moved here things went down hill. Kidney stones and flank pain , blood in urine every check , sick for no reason , tired. Had to have a hysterectomy due to very heavy , painful periods. Headaches , I mean you name it and I got it. I had my jaw broken by a dentist trying to remove a molar. Had to fly to Vancouver to get it repaired. So many things happened , then i woke up and my feet hurt so bad , went to doctor , oh you have plantars faciatis ok , so i bought new shoes and inserts , didn't help , that too went away. My digestive system was always messed up. Then during the summer well i would puff out like a balloon , the sun made me so sick i actually would feel drunk , room spinning and vomiting followed by a wicked migraine. Heat blisters. Crazy stuff. Then on a routine chest xray for my lungs , they find out my thymus gland is three times the size it should be. So i go through all the specialist and they don't know why and keep an eye on it to make sure it didn't grow.

Then last year i suffered pelvic prolapse , partly due to the hysterectomy and the lupus which i didn't know i had. Rectocele , enterocele and cystocele.. destroyed my pelvic floor , in bed now for over a year. My pelvic area is so tense and is in a tight ball , no operation can be done until it is relaxed.. how i do that i don't know. So I start having chest pains this past feb , i figured ah I just pulled a muscle. I waited five days and finally i couldn't breath , i go to ER , i have pleurisy , inflammation around the heart sac , fever . I had broken out in the butterfly type molar rash about three months prior but it was very prominent. So i was hooked up to IV's and stayed in the hospital , still taking prednisone along with hydroxychloroquine but unfortunately i am not getting better as quick as I like so going back in for IV therapy as I responded best with that. I am in a major flare right now . I could very well have had this for 14 years , undiagnosed. Because only one or two symptoms at a time , usually does not ring a docs head to check for lupus. And still because of the negative ANA , treatment can only go so far until I see a Rheumatologist .

I wanted to share a little of my story. I have been in bed since I was released and diagnosed on feb 25 trying my hardest to rest and get well to get off the prednisone. I absolutely dislike it. My face looks like a balloon , as well with the rest of my body...Thanks for letting me share and I am so happy there is a place like this to go to for support. I don't really have anyone to talk to about my illness. Seems everyone likes to change the subject or just not hear me. It is hard. wishing all the best and thanks for reading I realize it is a long read.

god bless
sharebear37

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 3/28/2011 9:34 AM (GMT -6)   
I am just so sad for you dear. You have been through an incredible amount of trauma over the past years. I have also been through similar issues--but they kept saying it was due to a pituitary tumor I had because it causes crazy hormone changes. I had two surgeries to "resect it" or remove the tumor and it is not very big now and I even had a pregnancy where I had my first child (had miscarried before) and so it was a good sign the pituitary was better. Yet I also have dealt with the severe debilating migraines/vomitting for years. Even my husband doesn't bat an eye anymore when I wake up vomitting daily. It has become a "normal" part of life. After my baby came my arms and legs went completely numb with a wierd prickly feeling in them all the time. I was extremely dizzy (felt drunk) and had a bad ringing in my ears. It took almost 5 months and a heap of steroids before it got better. I did not know what was happening to me and had a newborn to care for and was extremely frustrated. At one of the most special moments of my life that I had dreamed of my entire life--I was too sick to "enjoy" it. But then it just magically went away. A couple months later my stomach bloated out (over last summer) and we were working on fixing our new house--doing a lot of construction so I was out in the sun a lot but did not think twice about it since that's what we do for a living! But then the numbness and tingling in my hands and feet have never completely gone away and then gradually I started getting a very excrutiating pain in my central pelvic area. It turned out I had Interstitial Cystitis. I am just now starting treatment for that after a slew of tests (GI, colonoscopy, endoscopy, cystoscopy, laproscopy, etc.. etc..) and I am grateful for this, but I still have extremely swollen glands every where (around my neck, underarms, groin) and very painful joints (especially my wrists and ankles), and definitely have a malar rash as they call it which gets much worse under 2 conditions: stress and going outside (even on cloudy days which is illogical to me why)?! But anways...there is a host of other complaints I could list including lumps popping up everywhere on me that they continue to remove as they show up and have never been cancerous or dangerous--just in the way...


When I read what you went through though, I just completely felt for you and wanted to cry. I can completely understand your frustration. As soon as one symptom is gone, the next one pops up. And then you feel like a total idiot going to the doctor saying: oh, by the way, I am doing better with this but now that is a real problem for me. And never could understand why or what was wrong with me. I have not been tested for Lupus. I don't know if I have it or not, but finally last week I started going online at my husband's advice to look for a support group for the IC which has a very strict diet and treatments I am starting and I have been incredibly frustrated over everything with it. One person there said that often IC is secondary to Lupus and that many of my symptoms sounded like Lupus. (Not that I am trying to "self-diagnose" here or anything either!!!) But it rung a bell when the only thing that has ever consistently helped me is ... you guessed it... corticosteroids!!! That was what helped me last spring with the bad episode of whatever I had and they did diagnose me at the time with "an autoimmune reaction of unknown etiology" but that doesn't help much to have a "band-aid" diagnosis when you are in extreme pain daily and trying to function. I am not one to sit still, go to bed, or stop for any reason so I think that also confused the doctors why I would not quit school--they kept telling me to---but I am working on my doctorate online right now and despite how painful it is to type--I am determined to finish up!!! I don't care what is wrong with me, what the diagnosis, I am going to get better because my now 15 month old son needs me to provide for him and be there for him. I am very grateful and thankful for an incredibly supportive husband as well, but I also feel like you at times that I don't want to talk about it too much because it gets so old "moaning and groaning" about all these issues and don't want to make him get sick of it. Periods are extremely painful for me and heavy. Migraines frequent. My ankles are bruised all the way around them and swollen from just trying to walk around the house yesterday to do a little laundry and dishes.... no huge housework either--just that little bit of stuff. I have to keep them up a lot now during the day just to be able to walk on them.



So far blood testst the doctors have done have all looked "great"... but I did notice my RBC count is on the very low margin and my WBC count is on the very high margin....right on the limits themselves... so I don't know if that even is lupus since I read that it makes your WBC's low! But all I do know is that this is something that regardless of whether I get a diagnosis at this time or even in my lifetime, I have to live with. I am just trying to keep a sense of normalcy in my home, keep up with housework, working as much as I can, and my college work. Some day--something has to give. I am going to ask my family doctor for a bloodworkup, but I guess I am also scared that too will show that it is all "great" and then what?! What explains all these symptoms? My neck is so sore from the swollen glands that it is hurting into my ear and I cannot even lay my left side of my head down on a pillow it hurts so bad from 2 swollen lumps behind my left ear that have turned really hard-feeling like bone.



I just want to share all this with you so that you really DON"T FEEL ALONE. I don't want to burden you further with my own problems either, but know that it has helped me a lot to see there are many out there who are dealing with similar issues that we have--symptoms that come and go with NO explanation for them, problems that continue and continue, and worst of all--feeling just terrible the whole time with no real explanation for it. <snip> I just need to turn to God and I'll be better and give me a blanket excuse for dishing me off and not caring anymore--trust me---I know that feeling... that is not what I am describing here though. I am describing to you that at times like this we can find comfort in knowing that although NO ONE ELSE may understand what we are going through, physically, mentally, and worst of all--emotionally for all the trauma it causes not knowing and why no one can explain to us what is wrong with us-- we can know that <snip> So I am with you in understanding what you are going through and cannot tell you enough again how sorry I am you are going through all this. It is not YOUR fault!!!! <snip> it may be that your story may save others like me from reaching complete despair about our own situations because we see how strong you have been and how you have not given up!!!! So please keep your courage up. All the best and my prayers are with you sweetheart!!! Nicki (Btw...I am also 37) [img]/community/emoticons/yeah.gif[/img]

Snipped per Forum Rules

Post Edited By Moderator (Lynnwood) : 3/28/2011 10:12:49 AM (GMT-6)


sharebear37
New Member


Date Joined Mar 2011
Total Posts : 12
   Posted 3/28/2011 3:52 PM (GMT -6)   
Hi Nicki , wow our situations do sound very similar. And I was told if you have that molar , butterfly type rash it is only exclusive to SLE. I have had symptoms over the years and just disregarded the rash as it was usually in the summer out in the sun that it would happen. We just chalked it up to sun stroke. But then after each summer got worse and worse to the point of where ten minutes was instant sun stroke. Vomiting , chills , migraines. Break out in blisters. I have had unexplained low grade fevers for a year now. I also had blood work that came out just fine at times. So don't get discouraged for that. They say to test every three months for the ANA that is so important in the diagnoses of any autoimmune disease. Plus doctors seem to think that is the only test for lupus when there are a battery of tests that they have to run. I have had high white blood count on and off since before December. I went in for a sphincterotomy in December of 2010 due to spasm in my whole pelvic floor and a very large fissure from my pelvic prolapse and my white cell count was too high for them to operate so i was sent home with two weeks of antibiotics then to come back. I did that and came back , white cell count was still up a bit but they did the surgery anyway.

Well I looked after myself really well and stayed in bed to heal myself. For a good month I was in bed healing . Also I was sent to ER just after that due to this rash on my face and some of the other things happening led my doctor to go back and look at all the paperwork after four years of going to him with different symptoms. It all just fit so perfectly

I am truly sorry through everything you have as well. I really think the doctor's should really listen to us and not dismiss things so easily. By the time we saw a Rheumatologist my swelling and symptoms had faded so much that the doctor couldn't find anything wrong. so i left there confused

well now after how many years it has taken the organ of choice in which is my lungs and my heart sac. Both fluid around the organs and the high dose of prednisone has wrecked my body within a month. So he is taking me off prednisone and starting me on a cancer type treatment medication. The side effects of that is bad also. What does one do? keep trying until your heard and you get the right medication.

you can come on here and vent to me at any time. I appreciate the return comment and was feeling NOT SO Alone.. so thank you for that.:) Im in hospital receiving IV therapy for a few days , so sometimes it is hard , when i want to be home with my kids and dogs.. lol

take care you and never give up trying to advocate for yourself. Or look on line for womens advocate groups that are in your area , they will fight with and for you. Hope to hear back from you anytime..

have a good day
sharebear/shari

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 3/28/2011 4:36 PM (GMT -6)   
Hi My New Friend, can I call you "MY ShariBari?" turn  
I am so sorry you are in the hospital--ugh! I hate being there myself! I would also miss my baby if I had to go again--just had surgery a couple weeks ago but luckily no overnight like I had to do last spring...
 
I don't have tons of time as my little chap is summoning me to pay some attention to him, but wanted to let you know right away how helpful your email was to me and how much it means to have a new friend!!!!  I would love to keep in touch with you more. Is there a way for us to share phone numbers on this forum? I am much better at talking sometimes too! nono
 
Take care of yourself and get all the rest you can while you are in the hospital. It sounds like you need it!
Nicki   smurf

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/30/2011 11:30 AM (GMT -6)   
Hi, i also had a neg ana for a long time.. different symptoms... but no real answer ... long story short..it was my family doctor of years that suspected an auto immune problem the biggest thing was he new me my whole life... and i was getting sick just being outside in heat or sun for 5 min. he put me on methotrexate and didn't say much to me about anything ...he said if this helps it is possible you have an AI if not well we will figure something out. well it helped... then he told me i had to have blood work one time a month because of the prob. it could cause my liver. and i did for awhile but my kids were small and on it i was feeling better. and afraid of liver problems went off ... 6 months later full blown mylar rash and very ill and pos ana.

so i had been sick for years before and have other issues too. I feel for you I seriously kept telling doctors i thought i ws a hypochondriac. i thought i was mental. because it took years to find something ... firm. SLE is so hard to diagnose.

hugs to you both

wishing you more better days than bad... i have been in a flare for a few weeks and it sucks.

i also do infusions once a month. orencia. my medicine list is forever long but i have several problems.

Diana

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 3/30/2011 12:45 PM (GMT -6)   
Thank you Diana! My fam doc finally ran a huge blood panel today of ANA, rheumatoid factor, etc... etc... and had them x-ray all my joints that are bothering me--ankles, wrists, back, neck, and ultrasound my neck and underarms to look at the swollen lymphnodes. I am aching all over and exhausted just from sitting at the hospital all morning! CRAZY! And I know what you mean about being scared to say too much to the doctors for fear of being labeled a hypochondriac! Gosh... it seems like everything is hurting right now. But he is pretty sure because of the rash I have that there is something there and most likely lupus--also because of the autoimmune flare I had last spring real bad with no answers on that either--but they knew it was autoimmune because I got better really quickly with corticosteroids. Anyways... I have to lay down but thanks for the encouragement!!!  Means a lot! Nicki

sharebear37
New Member


Date Joined Mar 2011
Total Posts : 12
   Posted 4/3/2011 1:40 AM (GMT -6)   
Diana... thanks for the reply. Yes my doctor seems hooked on the negative Ana test , when , this last trip to the hospital , just got home on thursday , had pleuritis , carditis and edema from the prednisone. He says i am inflamed but my markers are good. Huge white cell count 20 when normal is 4-10 . He hasn't done the SM test as it is expensive and usually the Rheumatologist has to order that. I am on the waiting list to see one. I have a dermatologist appointment set up for my molar rash on my face. I am excited for that . My rash has been here for like five or six months now. I am on strict bed rest because of the "rubbing " in my chest . He figures I have been in a flare all year... Crazy. I have probably had this since my first lung operation at the age of 24 , 13 years ago. Now it has attacked my lungs again and the heart sac is involved as well. Left soo long. Funny my son is a type 1 diabetic since he was 9 he is 17 now. His pancreas doesnt work at all. He does not test positive for the anti bodies either. The doctors were mystified . Maybe it is an odd family thing i don't know. lol

I am so sorry you are in a flare right now as well. I really need to get out of this. Problem , it has been left so long , now i am in real pain . I have not heard of infusions but Imuran did come up in the discussion. Once again the Rheumatologist will have to decide on that one. for now i am on a loser dose of prednisone and tapering down , in three weeks i will be off. yay. and plaquenil and naproxen for the lupus. I am afraid it isn't strong enough as i have had two stays in hospital with methyl prednisone IV to get a jump start. Still no improvement. I had a ct scan during my last stay in hospital and they found shards of something , the tech couldn't tell if it were metals or calcium. considering i don't work around metals at all.. they sent a blood test away to Vancouver , so that doesn't come back for a few weeks yet. But highly unlikely and more likely to be from lupus. have you heard of this or anyone heard of this.

all the best to you and hope your flare is gone soon.. thanks for the reply
take care
sharebear

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/3/2011 6:00 AM (GMT -6)   
Hi ShariBeari! How are you?! I saw your post to Diane and am so sorry you are going through sooo much still. My family doctor finally saw me and he agreed that something is going on--something autoimmune in nature and he said that Lupus really would most likely describe the symptoms I have been having so long. He ordered an ultrasound of all my lymphnodes (everywhere--neck, underarms, groin, etc.), ordered x-rays of all my joints (ankles, wrists, neck, back, etc.) and ordered a host of bloodwork and urine. The bloodwork all came back normal (outside slightly high cholesterol) but my WBC are always at the high limit and the RBC are always at the very lowest limit (but within range). He said not to let the bloodwork discourage me--that he feels that I do have Lupus and he knows that I just want a name put to what I have been suffering with so long and he will get to the bottom of it. He said its a very hard disease to diagnose but he feels fairly certain from the malar rash that I have that this is what is going on (and other symptoms). The ultrasound did show a lot of swollen nodes (which he wants to biopsy and resect) and the x-rays showed a lot of arthritic action and scoliosis in my back... He gave me this medicine called Meloxicam (have you heard of it) but it is I think typically for arthritis and believe it or not--I am getting immense relief all over in my joints at least!!!  I only have to take it once a day!!! So that is a help. I still have pretty bad pelvic pain from the interstitial cystitis that I am being treated for (but only just diagnosed with in the past month) and have to take Elmiron 3 times a day for that...and then treatments every tuesday at her office--but I have real hopes that it will help before too long--it already seems to be somewhat eased off lately. I also found out in the last week that my grandfather is dying of a very aggressive form of leukemia. They have never found it in his bloodwork until about a week and a half ago and he slipped into a coma yesterday. They only found out he had it when they did a bone density scan. I also never show anything up on my bloodwork because when I had osteomyelitis in my right hip--my bloodwork always came back normal but with my WBC count ever so slightly elevated but within range (like now). It was only when they put needles down into my hip bone that they finally found the infection inside the bone and started treating it and they said I almost lost the use of that leg completely because they caught it so late. I am having a really rough week because I am devastated about my grandfather. He meant so much to me in my life. I lost my grandmother from a brain tumor only a few years ago and that was a huge blow for me because they were pretty much parents to me for a long time in my life (I had lost my parents at age14 when they joined a religious cult group) and so it is just not been easy this week. I find I have just been crying and crying all week about everything. I am really down because I just want him to be ok and I want the doctors to tell me what my diagnosis is. I feel that at least my family doctor is getting to the bottom of this and really trying to help me--so that is good--but it is very frustrating. I have been dealing with this for years!  I would love any emails or encouragement from anyone right now as I am really struggling this week!!!!  Thank you all!

sharebear37
New Member


Date Joined Mar 2011
Total Posts : 12
   Posted 4/3/2011 9:27 AM (GMT -6)   
I am very sorry about your Grandpa , I recently lost mine due to prostate cancer and looked after him in the last months of his death. So very hard to deal with. It sounds like your doctor is on to something. And you will be getting relief soon. That is great.. well not too much typing today. chest hurts with the squeezing.. take care

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/4/2011 8:19 AM (GMT -6)   
Hi My ShariBeari! I am sorry you are hurting!!!  I am also sorry about your grandpa. Mine left us yesterday morning (Sunday) around 10:00 am peacefully asleep. He had slipped into a coma the day before. I got to talk to him a few days before but he was in Ohio and I live in GA and could not travel so it was really hard to not be there but my family told me not to come because he was not really responsive and they said he would not know that I had even come if I did. I am just pretty devastated. I only found out he was so sick a little over a week ago and he is already gone! None of his bloodwork had shown anything but he was getting weaker and weaker and finally couldn't even go up the stairs at home and his doctor ordered a bone density scan and that is when they found the leukemia! Our family for some reason doesn't show up anything on blood tests! When I had osteomyelitis I should have had a raging fever and a high white count and everything for me was normal. Finally, they found it when they put needles down into my hip bone and drew it out!  I am really frustrated because all my blood work keeps coming back fine but I know there is something really wrong with me. I have never felt so bad in my life...    I really hope and pray this doctor is guided to find what is wrong and to be able to help me.  I am thinking of you and hope you have some relief soon too dear!!!  Nicki

Vinrouge
Regular Member


Date Joined Apr 2011
Total Posts : 20
   Posted 4/4/2011 11:29 AM (GMT -6)   
Hi girls,

Im new here too. Like you I have not been diagnosed yet but have been getting really weird symptoms for last few years....the last year being the worst. Also my recent bloodwork, that my GP took, is negative for Lupus.

Im getting alot of lupus symptoms including raynauds, rash on hands, joint and muscle pain, sciatica, some neuro problems like numbness and pins and needles, stiffness, awful fatigue, eye pain, nail changes, gynae problems...the list goes on. My doc has referred me to a rheumatologist to try and figure out whats going on as he thinks im 'a bit of a mystery!'.

I can relate to you all, Im a young mother too (28) to two little boys. Im married to a good man. But its so hard trying to keep things going and be as normal as possible for your family while u are in such horrible pain and so confused as to what is happening to you. I too feel like a hypochondriac....ive been in A&E a few times when I would have my 'episodes' for tests.., only to be told I must be depressed as my symptoms did not coincide with their findings!

I try to hide my pain because I dont want to look like a moaning misery guts....my husband doesnt know what to think. Im sure he thinks its all in my head, as all these tests are saying Im so healthy! Our relationship is suffering aswell because with the fatigue and the pains, I dont really feel like being intimate anymore. My kids, aged 6 and 2, wonder why mummy is grumpy all the time and why I dont play with them as much anymore. Its such a horrible feeling...and the worst is not knowing whats going on. If I had a diagnoses of some sort I could get treatment for it and my family and friends might take me seriously.

My doctor has recently put me on solpadol and difene, but it doesnt really help. These pains are so weird. Like flu pain but intermittent, migrating to different joints and muscles, only lasting a few seconds at a time. I have no visible swelling or redness, only on some of my fingers.

The rash appeared on my fingers 3 years ago. It was really strange, little splinter like spots under the skin that would cluster together forming nodules like sores or swellings over my knuckles with an itchy heat. Purpley red in colour. I went to lots of Gps but none could tell me what it was. Eventually i was sent to a dermatologist who took a skin biopsy and bloods along with a chest xray. She diagnosed the conditon as Lupus Pernio. This was the first time I had heard of the word Lupus. I later learned that it was not related to Lupus but to a seperate condition called Sarcoidosis. But I dont have this condition...so its all a bit confusing.

Anyway she prescribed me Dermovate Ointment and the rash cleared up a few weeks later. It lasted about 6 months in total. It only reappeared a few weeks ago after 3 years. All my other symptoms started happening gradually over the last year, progressing and getting more frequent. The fatigue and joint/muscle pain is the worst for me at the moment.

Sorry to go on. Just wanted to say that Im also very frustrated and feel like im going mad....you are not alone. I know my situation is no way near as bad as some of you, but I just wanted to show some support and introduce myself. I hope ye are doing ok and im sorry for your recent losses.

I hope we can continue to chat and support one another, as we are all living in a kind of limbo at the moment, no matter how different our situations are. Not knowing whats happening to our bodies is awful and being told theres nothing wrong with u doesnt make it any easier. If it is lupus, I can deal with it. Theres treatments there to help. Its this coping on your own, and things getting progressively worse is what is really hard when u know that it could be treated. A cousin of mine has recently been diagnosed with pancreatic cancer. She is just 37 and has been given 7 to 10 months to live. It kind of puts things into perspective. If it is Lupus or another autoimmune condition, ill deal with it...things could be a whole lot worse.

My Prayers are with you all that you get some answers soon.....

sending big hugs from Ireland XX

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/4/2011 11:36 AM (GMT -6)   
Yup, take oneself to the rheumy! They are the experts on auto-immune diseases and should be able to help you out with some lupus-inhibiting meds (plaquenil) as well as some others (prednisone) to address the random inflammations we get.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Vinrouge
Regular Member


Date Joined Apr 2011
Total Posts : 20
   Posted 4/4/2011 12:11 PM (GMT -6)   
Hi Lynnwood....

will the rheumy still prescribe treatment if there is negative bloodwork? Can he/she give a diagnoses based on just my symptoms? Does there need to be visible swelling of more joints? Can they start me on treatment as soon as they see me to control the symptoms? Sorry just very confused and new to this.

I dont have a date for rheumy yet, but im hoping it will be in next 2 weeks. Im going on family holiday in 7 weeks! Dont want to be miserable for that. ;)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/4/2011 2:53 PM (GMT -6)   
Some rheumys are smart enough to treat symptoms immediately, which is reasonable considering there is NO defining test for Lupus or some of the other AI disease that overlap.

Some hold out for bloodwork, which is a huge mistake as not everyone ever gets a positive ANA. If you get one of these, try for a second opinion.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Vinrouge
Regular Member


Date Joined Apr 2011
Total Posts : 20
   Posted 4/4/2011 2:59 PM (GMT -6)   
Ok thanks for the advice Lynnwood....its appreciated

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/4/2011 8:14 PM (GMT -6)   
Hi Ladies! Thank you for sharing your situation with us! It helps me out to hear your situations--I even read it to my husband, because it sounded almost identical to everything I have been through! I asked him if this did not sound familiar and he just kept nodding! It is so hard to NOT have a diagnosis as you said, and yet you are in constant pain, chronic fatigue, and just miserable and don't have any explanation why! My grandfather went through this for over 4 months because his bloodwork kept coming back negative--until he could hardly walk--and then they did a bone scan to realize he had an extremely aggressive form of leukemia! A week and a half later (yesterday) he left us. I am heart broken and wonder why the doctors did not pick up on this months ago!!!  And I have the same symptoms practically as he did--swollen lymph nodes every where, vomitting, extreme fatigue, extreme joint pain, rashes that get real bad from sunlight (purple circle like spots = well more like little oval shapes) and some areas are extremely itchy and others are not. I have sores in my mouth, blisters so bad on my scalp that they have turned into scabs, my hands and feet are numb a lot of the time and have this prickly feeling in them like a lot of needles being poked in them. Then I also have interstitial cystitis that I was actually diagnosed with and under treatment for. My family doctor said I have arthritic something in my joints that he saw on x-rays, scoliosis of my back, the lymph nodes showed up on ultrasound, but my bloodwork.....WAS FINE.... again! And I am so confused how I can be this sick with no sign in the bloodwork. Then I have unexplained fevers a lot, and my stomach looks like I am 9 months pregnant when I am not!!!  Just hard and swollen--with no explanation. It is all very confusing and frustrating having no diagnosis and I am sorry to go on and on also about this.... but as you know--it is hard to talk to anyone and easier just to keep it all to yourself or people will think I'm a hypochondriac or just always complaining or just get to the point that they simply don't care because you're always saying that you feel so badly. It is really hard and I am frankly on the verge of giving up. I have been struggling to keep up with work on my doctorate, my 15 year old son who I literally cannot keep up with I am in so much pain and can't move fast (and only 37) and I am just beyond frustrated that I can't get any answers. My fam doctor is running more bloodwork again tomorrow for more detailed tests for Lupus I guess... and trying to get me a rheumy referral, but frankly, I already talked to that office and the lady was so rude to me that I am not sure they will care one bit about my situation.... and there are few rheumies in this area... I guess I will see what happens and pray for the best. I wish you all the very best that life can offer and hope and courage. I really pray that God can answer our prayers and give us all answers. It is so difficult--I know!!!  Nicki

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 4/5/2011 2:12 AM (GMT -6)   
NikiS said...
And I have the same symptoms practically as he did--swollen lymph nodes every where, vomitting, extreme fatigue, extreme joint pain, rashes that get real bad from sunlight (purple circle like spots = well more like little oval shapes) and some areas are extremely itchy and others are not. I have sores in my mouth, blisters so bad on my scalp that they have turned into scabs, my hands and feet are numb a lot of the time and have this prickly feeling in them like a lot of needles being poked in them. Then I also have interstitial cystitis that I was actually diagnosed with and under treatment for. My family doctor said I have arthritic something in my joints that he saw on x-rays, scoliosis of my back, the lymph nodes showed up on ultrasound, but my bloodwork.....WAS FINE.... again!


Your symptoms are a lot like mine. My doctor found that I have swollen lymph nodes and something wrong with my spine, but she thought it was ankylosing spondylitis. I also have nausea/vomiting, fatigue, purple spots and rashes, mouth sores, forehead scabs, joint pain, urinary symptoms, numbness, cold sensations and tingling in my hands and body. I also have what appears to be Raynaud's phenomenon in my hands and feet. Sometimes I feel like cold water is running down the back of my legs. My blood work keeps coming up negative, except for vitamin d deficiency. I heard these symptoms could be from Lupus. Do you think they really could be related to leukemia?

sharebear37
New Member


Date Joined Mar 2011
Total Posts : 12
   Posted 4/5/2011 4:07 AM (GMT -6)   
To Vinrouge , I hope you are doing well. I am glad that you came and posted on here. I am new too. :) I would not give up , even with this negative ANA . Seems doctors get hooked on this blood work panel. They have a criteria to follow with 11 things on this criteria list that you must fill. I have almost all of them at this point in time because I am in a flare , but I have a negative ANA. Even with the pleurisy , carditis , edema from the prednisone , butterfly rash on my face that is so distinctive it could be seen blocks away. My blood work suggests there is something auto immune going on , he just isn't ready to commit to saying it is SLE , He is treating me for it with plaquenil and prednisone until I can get to see a Rheumatologist . Then had a ct scan and I have shards of something in my lungs that they are not sure what they are , so another specialist for that.

Health problems started for me when i was about 24 , I had the chicken pox with my kids they were 5 and 3 , my youngest and I were so sick with them , flat out , fever , could not move. Then after that things slowly started popping up , then go away and so on. It has been 13 years and nobody even thought to put any of my stuff together , even after lung surgery at 24 yrs old.

It wasn't even my regular gp that discovered it either . It was a fill in doctor and he took one look at me and sent me to ER and I was tested for lupus but they only gave the ANA test and then doctor comes back and says oh good thing you don't have lupus. I said great. Then five days later in there with pleurisy and carditis . I was so sick. They did more blood work and found some odd things going. My doctor also says i am a medical mystery .. for four years now. ha ha. you would think that they would spend some extra time trying to figure things out rather than making you feel like it is all in your head when you know it isn't .. or making you feel like a hypocondryacht , sorry about the spelling. lol.

my advice is don't give up. Keep going to the doctor. Start writing everything done. Even if you think it is too small to matter , write it down. It really does help when you finally do get to go see a Rheumatologist , then you can go to your medical journal and say when , what and how you were feeling , If you get strange things pop up , then take pictures. Usually around here you have to wait so long to see a rheumatologist that by the time you get there , half of our symptoms are gone.


keep trying , don't feel guilty about your boys. They love you no matter what and take things easy , one day at a time. I know easier said than done but honestly i have been bed ridden pretty much over a year now and i have a 15 and 17 year old. REALLY difficult parenting from a bed .. Things are getting better now but in the beginning it was harsh. Keep your chin up and keep posting and never give up..

takecare
sharebear

Vinrouge
Regular Member


Date Joined Apr 2011
Total Posts : 20
   Posted 4/5/2011 4:32 AM (GMT -6)   
Hi NikiS and Sharebear,

Sharebear, You have been thru alot hun, havent u? Despite all this, you seem to be a very upbeat, optimistic person. I really admire that.

With me, I really dont know if its Lupus....alot of my symptoms and the progression that they are taking seem to point towards lupus or some sort of auto immune disease. Even thought Auto immune diseases are not in my family. I cant think of anyone who has an AI disease that im related to.

I called the doctors surgery this morning to follow up on the referral appointment and the receptionist told me that its been sent off and I should get an appointment very quick. Here in Ireland, if you go private, you get seen much quicker. Public takes months. So even though we cant really afford it, I opted for private treatment. You cant put a price on your health afterall. We have private health insurance, so that will help some bit. Im hoping to get some answers off the rheumy at the 1st visit, but Im afraid incase he only goes on bloodwork etc.

U really are an inspiring mom. I hope your eldest boy is doing well and I hope u feel better soon and you get back to some normality again.

NikiS, Thanks so much for your reply. Im sorry you are not doing so well and Im so sorry to hear about ur grandad. Because there is a family history, would you not push your GP to test you for the same? As it did not show up in his bloodwork and you are experiencing similar symptoms....Just incase is all....better to be safe.

God bless ....

Vinrouge xx

sharebear37
New Member


Date Joined Mar 2011
Total Posts : 12
   Posted 4/5/2011 9:06 AM (GMT -6)   
Ireland , holy cow.. lol... I am from BC Canada.. We have really good health insurance here. I really feel for others that do not get the same opportunities to have good health insurance. I believe Rheumatologist's in general are very dry and have little time for bed side manner . Not all of course are like this but the majority around here anyway. They will have to go by symptoms as well as blood work. So don't worry about him/her only going by blood work.. They know in their business that they see different blood tests results all the time and people still have the illness.

I pray by going privately you will be seen soon. It is very important to write anything down that you can think of that you have been experiencing over the years. Even if you think it is too small or no big deal , everything counts.

please let us know how you are doing.. I get to go for a lung functioning test today...fun stuff..

sharebear

Vinrouge
Regular Member


Date Joined Apr 2011
Total Posts : 20
   Posted 4/5/2011 12:15 PM (GMT -6)   
Sharebear....best of luck today on your lung functioning test wink
 
Let us know how u get on...
 
Ill keep you updated on rheumy appointment....hopefully it will go ok. I better get cracking on that symptom list!! it gonna be a long one!! lol
 
Chat soon xx
 
 

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/5/2011 7:04 PM (GMT -6)   
Hi Pink Blob, Vinrouge, and My ShariBari! Thank you all for your very encouraging words. My doctor wrote me the kindest letter for my disabilities office at college (not to get on disability or anything like that but so they will allow me a little extra time on assignments for school when I need it). The office wrote back and said they need another letter!!!  I am floored... but at least my GP is really trying hard to help. He ordered more bloodwork and working on a rheumy referral too. I am in an all-out flare as I was in the sun the other day taking the kids to the zoo Sunday and now I have a bad rash on my face, chest, and even purple spots on my feet--wierd. I also get that cold feeling running down my back, legs and arms sometimes, or like a crawling sensation occassionally like something rubbed against me or is crawling on me--it is very rare though that it happens. But the numbness, tingling/prickling feeling and all is a daily thing--I wake up each morning with my arms and legs completely asleep and have to literally shake them awake before I can get up. It is a real issue for me if my baby is crying and I can't pick him up until I have feeling back in my hands. Anyways... I am thinking of you all. I think I will also try to really think hard and make a list of symptoms and start taking pictures. As you pointed out--everytime I finally get in to see a specialist--the symptoms are gone or changed and then just describing them to the doctor is pretty useless as they want to see it each time! Good luck with your tests... I used to live in England by the way--my parents are still there in Robertsbridge (near Hastings on the southern coast). Good luck all and keep your chins up!  Nicki

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 4/5/2011 7:38 PM (GMT -6)   
sharebear37 said...
To Vinrouge , I hope you are doing well. I am glad that you came and posted on here. I am new too. :) I would not give up , even with this negative ANA . Seems doctors get hooked on this blood work panel.


That's so true. They even know that the ANA tests come up as false negatives all the time. What's interesting is that new drug for Lupus, Benlysta. It only helps some of SLE sufferers, like about a third. What it does is stop B cells from maturing. That's probably because there's more than one antibody that's involved with Lupus that they haven't found yet. That's probably also why ANA tests only confirm some of the people suffering from Lupus. It seems like they might as well quit letting people suffer that have neg blood work and obvious Lupus and treat them.

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 4/5/2011 7:42 PM (GMT -6)   
NikiS said...
I am in an all-out flare as I was in the sun the other day taking the kids to the zoo Sunday and now I have a bad rash on my face, chest, and even purple spots on my feet--wierd.


Describe these purple spots on your feet. Were your toes purple? Or did you have veiny looking purple areas all over your foot?

C/Z Fan
New Member


Date Joined Apr 2011
Total Posts : 19
   Posted 4/5/2011 10:01 PM (GMT -6)   
Hi Everyone,
I've been reading for a few weeks and just signed up. I'm amazed at what some of you have been living with.

I've had a pretty mild case of lupus for about 20 years. It's been controlled with plaquenil and an occasional few months of prednisone when I have a flare. As I read your stories, I find that I have many more symptoms that I never attributed to lupus--numbness and tingling but mostly I feel that I have poor circulation b/c my feet fall asleep very easily. They even get numb when I'm on the cross trainer for more than 20 min. at the gym. I've also had lots of run-ins with the chicken pox virus--cold sores, chicken pox (once as a child and once as an adult) and shingles. Anyone else have a higher occurance with that?

More recently, I've developed pleurisy (about 6 mos.). I'm now taking plaquenil, predinisone and just added Cellcept. Does anyone know how long Cellcept takes to have any effect? Does it build up? I hate being on meds and I'm hoping to get back off of everything except the plaquenil.

One other question. Has anyone tried accupuncture? I've been going for about 11 weeks. It hasn't helped the pleurisy but I notice a difference with some of my digestive issues. I'm less lactose intollerant, which is a real plus for this dairy product fan.

I look forward to getting to know you all and wish you much success in your search for good health.
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