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03-03-2010, 08:10 AM
Sorry I think I put my post in the wrong place :( please delete it if so, it's supposed to be in this section.:wideeyed:

OK maybe I'm jumping the gun, but when my dr told me it's a great possibility I have Lupus, I ran with it. She said that based on my medical history and exam - I have 8/11 criteria and have to get testing done this week...it all fits and I just want a "name" for the craziness I've been through...am I pathetic for doing that?

These are documented symptoms from doctors appointments;

I 've had dizziness/fainting - since age 9; headaches - since teen years; miscarriages; Group B Streptococcus (pregnancy) blood sepsis; extreme swelling in feet, edema in legs, hands - off & on; anemia (11.0); skin rashes; mainly upper trunk area, head/scalp; kidney/urinary problems; left flank pain; EFGR 66/Creatnine 1.0; WBC, blood, URO, ketones, leukocyetes in urinalysis; extreme fatigue; shortness of breath; abdominal discomfort/pain; nausea, vomiting, diarrhea, constipation intermittently; abdominal pain/bloating; enlarged liver; diffusely echogenic; numbness on feet; chest pain; nausea, vomiting and diarrhea; lump under left arm - baseball size; left flank pain, diarrhea, constipation, on cold symptoms, feels like flu; extreme fatigue; urine dipstick - 1+ leukocyes; EKG - Sinus Rhythm 51, multiple PVC's, incomplete RBBB, QT interval short for rate - Urinalysis color light yellow, character cloudy; EFGR - 59; creatnine 1.3 ; palpitations, arrythmia's; rash across cheeks and nose (looks like a sunburn;worse when in sun); sun/light sensitivity; heat intolerance; hair loss; joint & muscle fatigue/pain; mouth/tongue sores (roof of mouth, side of tongue); poor memory/brain fog; sometimes it's difficult to remember events and simple names of things, other times no problems at all; depression; sore throat; numbness in left hand/leg; muscle pain & tenderness; stiffness/soreness upon waking; blurred vision, eyeball pressure (feels like eyeballs are going to pop out) itching, dry eyes, occassional excessive watering; right eye twitches; ringing in ears; Moderate obstructive sleep apnea; NCS/OI; ANS dysfunction - HUTT; Cardiac Ablation - malignant heart arrythmia's.

After I put this all together and read it, I said wow I didn't realize so much was going on with me. I am missing records from 1997 - 2000, so who knows what else I could put down or add to.

Maybe someone can give me some guidance or advice here and I hope others don't have to wait a lifetime to get diagnosed.

03-03-2010, 10:17 AM
Hi Lisa,

I saw your duplicate thread in Lauri's Lounge and I edited it so people will be directed to this thread, and for your convenience, all your answers and responses will be in one place. The important thing is that your message be in an area where it will be seen and responded to quickly, by the largest number of people possible, and for that, this is the place.

I want to tell you up front that NO, you are NOT pathetic in any way, shape, or form for wanting to put a name to your symptoms. Gotta know your enemy before you can mount a proper defense.

So, on to your symptoms. Lupus can have a wide range of symptoms, and no two people or cases are exactly alike. I was diagnosed with SLE in 2004. Being a guy, I'll leave the female specific stuff for the other ladies here to deal with. Overall, many of your symptoms are not common with SLE, but that does not mean they do not happen. However, Some of your symptoms, one's that we consider the more common ones associated with the disease, are definitely there in your list. In particular the ones I've experienced on your list are the quarter and dime sized patches of hair missing, I had two, they eventually came back, but that's the piece of the puzzle that finally led to my diagnosis. It's called Alopecia Arreatta. The others would be the brain fog, mouth sores, extreme sun sensitivity, terrible fatigue, joint pain, and the rashes you mention, although I've never had the typical Malar "Butterfly" rash across my face, I get it most everywhere else though.

Many symptoms associated with Lupus are transient, one of a kind type things that may only happen once or twice. I've woken up with what is obvious AI related inflammation in parts of my body never affected before, and had it go away never to return. The disease activity is weird that way. Many of your symptoms could be from a myriad of other conditions, however you are approaching this wisely by focusing on the most likely candidate for the time being, and within the scope of the website and discussion, I'll keep my focus on Lupus for now as well. It's easy to get sidetracked and overwhelmed (thank you brain fog).

You have already done alot of your homework, and I see you are familiar with the diagnostic criteria, this is good. One thing I do not see in your list is the results of an ANA (anti-nuclear antigen) blood test. Although there is no single test conclusive of Lupus, a positive ANA result is a very strong indicator. Do you have a Rheumotologist? They are the specialist who usually makes a Lupus diagnosis. I suggest you find one, if you do not already have one, make an appointment sooner than later, and take your list of symptoms to the Rheumo and tell them you want to be tested to see if you meet the Diagnostic Criteria for Lupus. Stay focused and be persistent, don't let anyone tell you "it's only in your head", because it's obviously not.

Lets see what other's here have to say. We have an excellent body of knowledge here with members who have lived with Lupus for many years, and thrived despite it. We're a pretty social, easygoing group, so please make yourself at home. Welcome, and I hope we can help you find the answers that you need.


03-03-2010, 11:38 AM
Thanks Rob :)

I went to my neurologist that did an EEG last year, for what I thought could be nerve damage. After she took a complete history and a very extensive exam, she said she was sending me for blood tests for AI and said I had 8/11 markers for Lupus. I go this Friday for my blood tests (Ana, cbc, cmp, immuno (something I cant read her writing) urine immuno (again something I can't read) HB or HG AC and 2 other tests I cant figure out. She picked up on what 8 other doctors in the past year have not, I'm relieved but scared at the same time. (I know you all can relate)

I told my husband what she said and said NO way I could have Lupus, but I didn't know what it was until I read about the symptoms and said WOW. Then it hit me about my hair - my mil asked when I showed her last year my hair if I had been tested for lupus, enter the denial phase of anything being wrong lol

Dr said with the other things going on with me she can't put me on medication, but does want me to see a Rheumotologist after I have the bloodwork, ct scan (cant have mri due to pacemaker/icd) and EMG so I don't have to have tests done again at their office.

I'm up in the air about the ANA thing though, I've read many tests say negative when you do have it or positive when you don't have it or switches from one to the other, but I'll find out after I have them done Friday. Either way, I feel like this is the right track.

03-05-2010, 12:02 PM
Yes, it does sound as if you and your doctors are on the right track now. Today is Friday, so you are seeing your doctors today. Please tell us what you discussed, what was decided, and how you are doing?

Peace and Blessings

03-08-2010, 06:21 AM
I had all of my blood work done and going to call my dr today and see how long it will be before they get the results and request them send me a copy asap so I can prepare for my appt at the end of the month.

I had this really crazy idea from another forum - spend a few minutes in the sun to "help" your ANA on your blood test.

wow it threw me for a loop and I only spent 10-15 total out side - it was about 50 here in FL but a UV index of 10+ on and I felt like I was roasting. I burned so bad my eyes swelled almost shut and I thought I wasn't going to be able to get my blood work done. I have been so sore and aching all over that I can barely walk or sit up and just this morning been able to do anything :wacko:

I've had a problem with sun/light sensitivity for the past year or so, but this by far is the worst I've ever had.

just waiting on pins & needles for my results :P

03-09-2010, 05:28 AM
arrrggg I called my dr's office yesterday and tehy told me the secretary was out so everything was on hold for a week and not sure when they'll get my results - it could be a week or if she had me tested for other stuff it may be 2-3 weeks before I know :hissyfit:

03-09-2010, 06:48 AM
arrrggg I called my dr's office yesterday and tehy told me the secretary was out so everything was on hold for a week and not sure when they'll get my results - it could be a week or if she had me tested for other stuff it may be 2-3 weeks before I know :hissyfit:

Waiting like this really sucks. Sometimes I think they forget that we are hanging on the answers they give us. It can be terribly stressful to sit and wonder with no answers. When this happens to me, I just try to tell myself that we are making forward progress overall, and waiting is a part of that process. Try to stay busy with activities to keep you from worrying. I know It's easier said than done. I had a bad memory lapse on my way home from the store on Saturday (I think) and got lost. I have a bunch of tests with my neuro tomorrow, so I'll be doing the waiting game too.

I'm incredibly sun sensitive too. Even before lupus I was. I'm really fair skinned, never was able to tan, just burn, and really fast. Try to be careful about your sun exposure. I don't think the idea of intentionally getting sun exposure to help with your tests is a good one. Just be careful. I hope you get some answers ASAP, and I hope you're having a good day.


03-09-2010, 08:30 AM
oh Rob, that's terrible how did you find yourself? :cute: hehe sorry no offense I have a 9 yr old Autisitc son and getting lost is no laughing matter; we have him on Project Lifesaver because the school he was in LOST him! he got scared during recess when some other children were fighting on the playground and ran to the media center and made himself at home reading for awhile before they found him [thankfully] now within minutes they can track him to wherever he is if he ever gets lost again.

sometimes the waiting game is worse than the news the drs want to tell us; went my round of that a few times last August when I had heart surgery :wacko:

I've lived in FL since I was young and have gotten used to the heat & humidity here, never had a problem even being outside all day doing whatever - beach yard work etc until I got really sick about 1 1/2 years ago - since then I've noticed the heat intolerance and sun/light sensitivity, I just had no clue anything was wrong with me until August 09. Since I've never had a problem with the sun and have hide instead of skin, I thought I'd see if the sun idea made any difference, now I will be extremely cautious.

good luck with your tests and hopefully you'll get your results quickly :P

03-09-2010, 09:09 AM
Hi Lisa,

You're a very punny girl! Hey, if you can't laugh at yourself, life can quickly become more serious than it needs to be.

Long story short, I went back to the last place I thought I could get back to, which was the grocery store I had just come from. I drove right past my road on the way, and I did see the street sign with the name of my road, but the letters were mixed up, and I could only understand the individual letters, not the actual word they formed. Anyway, I made it back to the store and a payphone (cellphones don't work in my area). I keep the phone numbers of friends and family written down and on me at all times for just such an event. I got ahold of my girlfriend and she came and had me follow her back to my house. She's extremely understanding, and supportive.

It was an odd sensation. Earlier in the evening, I kept thinking I forgot something. Every minute or so, I would think I locked my keys in my truck, or that I forgot my wallet. Very strange. I'm fairly sure this new problem is related to MS, not SLE. It was different from my usual Lupus brain fog. The funny thing is, I know this area like the back of my hand, and I used to have a somewhat photographic memory for maps.

I know what you mean about heat intolerance. I used to live in Arizona, and was also stationed in Southern AZ while in the Army. Although I've always burned easily, I was acclimated to the hot climate there, and had no problem being outside working in the heat. That all changed in the months leading up to my SLE diagnosis. I now have no tolerance for heat. I start sweating and it does not stop even when I would go inside and sit in front of an A/C unit. It would take hours to cool down. Got very light headed too. Not fun. That's one of the reasons I moved to Maine. I live on the Southern Maine Coast where the temps are not too cold in the winter, and never hot in the summer. It's a very mild climate overall, and has been beneficial in many ways.

My neighbors son back in AZ is Autistic, and he has a system like what your son has. It sure did save his parents alot of worry, knowing they could find him easily. He would get lost from time to time, and like your son, it was usually triggered by some sort of stressful, sudden situation that scared him. The technology available these days really is amazing.


PS-The waiting game is definitely worse than the actual news.

03-09-2010, 01:41 PM
hi lisa,

i just wrote this long welcome to you, and poof, my internet went down and it was gone....oh, well, no one here will be surprised that i had computer problems. ha ha ha

welcome welcome welcome. You will find that this forum is where you will find how to live with lupus. Any debilitating disease requires that we learn new skills, and that we make different choices. Please know that someone is always here to help whenever you have any questions....rob and saysusie have already demonstrated the compassion and knowledge among our members.....they are the foundation of the family.

i am going to send this now, so as not to risk loosing again. Just know that i have read your posts, and i think you are an amazing woman who knows how to fight for one's health....

03-15-2010, 09:13 AM
What's my next step? I know some go months or years with a negative ANA then get a dx, if I can't get a dx from my symptoms, how do I get them treated?

My ANA was negative, everything else except my MCHC was 31.9 [Low] and my EFGR was 59 [low] A1C was 5.8 [high] yet my glucose was 74 [normal]

I have to wait to go back to my neurologist because a mix up with my insurance; can't even see a doctor or get my heart meds until I get this fixed :hissyfit:

03-15-2010, 10:55 AM
Hi Lisa,
Welcome to WHL. Sorry that I'm late, I somehow missed your earlier posts.
I'm familiar with a lot of your symptoms, too. The dry eyes made me think of Sjogren's.
I wouldn't be surprised if you have some overlapping AI diseases, as several of us do.
Mine is called Mixed Connective Tissue Disease and I have overlapping symptoms of Lupus, Rheumatoid Arthritis, Sjogren's and Psoriasis.
Hopefully, you will soon have some answers and you can get started on some meds that will help.
Keep coming back, and keep us updated.

03-15-2010, 11:16 AM
Wow, I'm sorry. I wrote my last post before I saw your last post. As you already know from your research, one can have a negative ANA and still have AI issues. Since you have those dry eyes, this is the next step that I would take. Go see an ophthalmologist and get tested for Sjogren's. They will test your tear production with a Shirmer's Test and others. In blood tests, it does usually show up with positive ANAs and positive SSAs and SSBs. You just might get some help if you go at it from that angle. Since you have so many indicators for SLE, I wouldn't be surprised if you are eventually found to have a Lupus overlap.
Here's another thing - hopefully, you can find a doc who will actually treat your symptoms, not just rely on the blood tests.
Good luck, and go see an ophthalmologist as soon as you can.

03-16-2010, 03:57 AM
Marla and mountaindreamer, thank you I appreciate your kind words :9:. I'm so glad others know how I feel, I told my husband I feel like a huge tornado with all this stuff inside my body churning every which way, he laughed and told me he wouldn't get in my way.

It's so difficult to understand all of this when less than a year ago I was healthy, just abit overweight. When my hair first fell out back in March 09; my mil asked if I had been tested for Lupus, I looked at the symptoms and said no way I could have it.

I'm going to look up more on MCTD, I believe the dysautonomia forum I'm a member of has discussed it - if I remember quite a few dys patients have it. I haven't heard of Sjogren's but I'll look it up so I can mention it to the dr also if she doesn't bring it up and I'll ask about the opthomologist.

My neurologist is great, she said she didn't want to put me on any meds yet until I got all my tests back because of my ANS failure and my heart problems; I'm not sure what type of meds I can be on with those conditions plus I have a pacemaker/icd that I had implanted with my heart surgery last August.

I do notice some relief in symptoms from Ibuprofen, but only at higher doses which concerns me with kidney problems they tell me I don't have. I know something is going on with them, my EFGR has steadily declined for the past 5 years from 66 to 59 and creatinine increased from .9 to 1.1, not to mention the excruciating left flank pain that started out of the blue in 2004 - nothing showed up on any tests I had.

I think my A1C levels have to do with my ANS failure; but I can't be positive. I don't understand how I could have high lvls when my glucose has always been in normal limits. I went to the Diabetes foudation and they have an estimated glucose thing that shows with my a1c, my glucose should be 120, so it may be nothing.

See my tornado pattern? :P I just go along and just pick up stuff and mix it all in hehehe I wish I could find a large clinic to go to like Mayo or Cleveland that was within my network for UHC, if not it would be $12,000 deductible up front - I had to check on Mayo when I first went to my cardiologist last year.

Thank you again everyone for being so nice and supportive, it means the world to me because I feel like none of my family or friends understands :grouphug:

03-17-2010, 02:56 PM
hi lisa,

marla's recommendation for an opthamologist is a great idea. My insurance pays for my visits because of my diagnosis and because of possible side effects from Plaquenil, the most comon medication for lupus. When you call to make your appointment, talk with the office that files the insurance, and see if he/she can help you get it covered.

Also, I think you had an excellent idea of finding a clinic like Mayo that is in your insurance network...I have gone to the mayo in jacksonville, and was very pleased with my visit. I wish i had been more educated myself, i would have benefited more. But, that was 15 years ago, and i had no idea what was happening to me.....i thought i was dieing...i had gone from extremely active, self-employed, single mother to barely making it through the day.

I am so glad that you have your neurologist....this can be a tough battle while trying to get a diagnosis and while finding a good dr....and it really helps if you have a medical professional in your corner.

hang in there, lady.....there are better days around the corner. They may be followed by more bad ones, but one lesson that i have learned is to enjoy those good days.....the little things mean so much more to me now.

03-18-2010, 06:37 AM
I'm so bummed, angry, upset ...add in every other emotion I can't stand it. Here I'm thinking I'm going to get it all together find what's wrong with me; get me fixed and life just throws me a unbreakable wall. Sometimes I just wish the doctors wouldn't have saved my sorry butt and let me die during surgery. My husband would have been able to pay off the tons of medical bills I now owe, buy a house and take care of our kids and not have to worry about me again.

I figure writing this down will help me cope, to vent may help who the heck knows...I'm just tired of it all, tired of being the strong one who despite everything I endure, has to just stay on an even keel and can't let go. Why can't I ever take the easy way out or do things the easy way.

I swear I feel like I'm on this rollercoaster that went from the highest peak and heading downhill to a broken track into the grand canyon - I'm sitting right there on the edge looking over waiting to just go over.

Things just keep happening, things that stress me to end and make me feel worse than I already feel. My insurance agent screwed up and didn't tell us that our deductible reset in Jan; when we were told it would reset when our policy renews in June, so now instead of $3,000 I owe, it's going to be $6,000; plus another 3k starting in June - Dec. So do I pay that 6k or do I feed my kids, put a roof over their heads and make sure we stay safe. We cut back everything we can and our business pays for everything else - that's the only way we have internet or tv.

I'm trying to get disability for all of my health issues and have cut back my hours & pay. My pvc's are getting more frequent again along with the VT, but no way I want to have an ablation again. I can't sleep more than an hour or 2 at a time; my appetite goes from not eating to eating too much. I have constant nausea and pain from top to bottom of my body - excruiciating nerve pain that a few months ago was only in my left hand & lower body.

I can't even sit up most days to do what work I need to do so my husband has to do it - which makes him mad at me. He'll say things like I guess I'm going to have to hire someone to do your work if you don't get better; which means we lose even more income....I feel guilty he's working his butt off and I can't even do things I could do 3 months; 6 months or a year ago.

My body is failing me, I get some help from doctors; then things like with my insurance happens and I can't go back; even to get medicine. Neuro says possible Lupus and I got excited at actually having a diagnosis; bloodwork said negative; peripheral neuropathy - I suspected already and on top of that, the nurse told me she put a note in my chart diabetes and will talk to me about it when I go back in. I got my blood work and found out my kidneys are the same as Dec 08; so it is stage 3 CKD and I need to see a specialist, my ANS problems are perplexing to say the least and I have a suspicion it's PAF. My eyesight is getting worse and my left eye started twitching yesterday along with the right one.

To top it all off, what I thought was going to be a quick & easy 90 days after my lawyer filed a case against my supplemental health insurer, turned out to be more and I'm still waiting - the company's lawyer got an extension and my lawyer didn't tell me. I really believed it would be simple as he put it - contract laws are 90 days...I'm so naive, now who knows how long it will take for them to clear this up through the court and get my claims paid.

And the great clincher - I've talked to 5 attorneys about a case against my pcp that did my ekg in 2007 and didn't think anything of my frequent bigeminy pvc's and told me nothing was wrong - no one will take my case because they say I won't win my case because it's my fault for taking Phentermine. I'm paying daily for taking it, why shouldn't he have to be held accountable for seeing that EKG and prescribing it to me for 6 months?

I just want it all to stop, but no matter what I do it just keeps on... sorry to sound so negative, I just need to know someone else understands how I feel.

03-18-2010, 07:28 AM
Hi Lisa,

I'm sorry to hear things are going so badly. I wish I had aclear head to maybe come up with some suggestions to help, but I'm working with a muddy brain the past few days. My neuro ended up finding new signs of MS progression (new white matter lesions), and I got a much heavier dose of IV Methylpred to hopefully stop this latest bout. Makes me nauseated, and messes up my sleep, and appetite.

I know all too well about the desire to just have an answer. You need, and deserve one. And if your story isn't a prime example of why we need healthcare reform, I don't know what is. I am very fortunate to live in Maine, where healthcare is basically free for anyone on SSI disability.

I hope you can get you situation straightened out, and get a diagnosis so you can get better. I know it's hard, but please hang in there.


03-18-2010, 12:07 PM
Hi Lisa, welcome glad your here !!!!

03-18-2010, 06:26 PM
Hang in there, Lisa
As I read your post, I got angrier and angrier that our stupid congress can't hurry up and do something about the terrible state of the health care in this country. How the fat cats can convince so many people to protest against it is beyond me.
We used to have an HMO, which paid for most things, although I did wind up paying for a couple of MRIs that they conveniently denied. Now we live in an area where the only things available are PPOs, so we're being nickled and dimed to death. The good thing is that my hubby works for the Federal Govn't, so we can change our insurance company, and they can't refuse me because of a pre-existing condition - yeah!
I just wish that everyone could have decent coverage, and not go through what you are facing.
Keep trying, and see if you can set up some payment plans and still get some medical care. It sure sounds like you need to be under a doctor's care.
Also, try to be calm. Stress will make it worse.
Lots of Gentle Hugs,

03-22-2010, 06:16 AM
Thank you all, I appreciate your words of kindness & wisdom.

I feel so embarassed just going off the deep end like that. I normally handle things well and keep my emotions in check, but now I'm really wondering how much I really was handling things before. I know stress is a major factor for me and I can't get rid of it easily with a disabled child to care for daily.

Take today for instance - I got a wake up call to show me I needed to kick myself in the butt [literally]. My son woke up crying at 440 am, he just doesn't know how to say he doesn't feel good, his sinuses are bothering him, so he screamed through the house and woke everyone up, and cried since that time. Nerves on edge I finally just told him to stop and go play on the computer, knowing that would calm him down - :hissyfit: but it didn't. I got so stressed to the point my heart was flying around my chest and my heart monitor made me interrogate my pacemaker and send in a report. Now I'll have to go into the dr and insurance won't pay for it because I haven't met my $3k ded since Jan.

I don't know how some of you handle waiting on a dx, I don't deal well with being sick or life in general it seems anymore. Part of my problem is being in pain daily and not taking anything for it other than OTC ibuprofen, which only alleviates a small portion of it.

I do have an appt with a physco - something or other for social security next week, so I may ask him about a payment plan at least until my ins renews in June.