View Full Version : Undx'd Newbie Driving herself insane with ? .
01-29-2013, 06:00 AM
Obviously Im new here, In a quick tid bit, Female 33 yrs old and over the 4 yrs ago I started working out, quit smoking lost weight, Went from 220 lbs to 146 lbs and 2 yrs ago I was running 5 miles a day lift weights every other day for hours. I never in my life felt better. Until all of the sudden something happened, My body began to just be tired. I couldn't workout, I had a winging scapula that caused awful pain. I was having numbeness,tingling,chest pain etc. Cardio Doc put on my work leave and spent 2 months running tests. All He found was LBBB, very small ASD (at the time) enlarged LV and an ejection fraction of 40-42%. As I continued to feel worse and more tired, I drug myself to work. My hands would swell or feel swelled and tight all summer etc My short term mermory is gone, to my friends id , oh what was I saying LONG AWKWARD PAUSE and nothing absolutley nothing oh well moving on. My hands and feet got worse, at times id feel I couldnt use my hand at all and they were oddly cold. In my own research I found Raynaud's Phenomenon and then I started documenting everything, all of it. I felt I was getting nowhere with my Dr. and learned if they didn't "see" it then surely I was over'reacting. So I began taking pictures, every lab test blood work urinalysis blood gas pulmonary functions test etc before I have the test done I write on the order " ALso send copy to patient" This way I can add it to my binder and no matter when or where I see a new dr. I have it with me and they can see it all. My dr. did confirm raynauds and I knew he would , but I never mentioned it, merely showed him my pics.
At this point Im struggling with work, I work in a DELI, it's COLD. I have Raynauds, Butterfly rash, what they call or what I saw on google as livedo reticularis, a lacy fish net look to your skin, I have trouble peeing aside from feeling I gotta go non stop , never omg I gotta go just oh I peed but I feel like I still need to pee and when I sit to I gotta think about it really hard, I was at the ER 2 times last week, Inflammation of the lining of the lungs. I have a hard time swallowing, my mouth is dry always and I taste either a sweet or bitter taste. I notice I don't shave my legs as much and myy hair although already thin is getting worse. My lymph nodes behind ears will flare in a matter of minutes and sometime my whole body hurts so bad, my elbows , knees, etc as if someone was knocking me with a hammer. Im on heaving pain meds due to ingury from past and new... Dr thought MS maybe nope that's all good and did an RF came back negative, did a Lyme titer also Negative... Did a ANA direct came back NEG and from what I hear from most other dr. that test is pretty unreliable...Ive noticed the last week after feeling horrible pain and my lymph nodes swelled I have found what look to be circle rash dots I only have a few one the size of a nickle but it seems to be getting larger and I keep finding a new one every few days.. Not to mention all the co-workers I have seem to gang up on me and say you "claim" to have this and that and there's people with far worse disease and if you want sympathy your not getting here. Just really mean things telling me I was crazy and go diagnose myself again. I didn't want sympathy or anything in fact all I wanted was understanding that If I can't bust my a$$ for them (Walmart) everyday then they know why and Im not being lazy. but they don't care so I chose never to speak to my coworkers again unless it only work related. So I need to see a rheumie but the only one to take my insurance is 45 mins away and they are case by case, Dr reviews my stuff and if thinks Im good enough for her then she accepts me ... I thought for sure Id get a no, however when I called yest to see how I could email all the photos to them sure that would help , they said the dr saw it already and they were ready to schedule me. So it's good and bad in a way, obviously Ill finally get close to get an answer and maybe b able to feel a lil better but at the same time Im like it obviously must mean she saw something or thinks I have Lupus or Im bad enough to be worth her time. My 1st appt. is March 5 . My sister also has some of the same issues as me... only she has a positive speckled ANA, does it seem to far fetched to think we both could have Lupus.... Granted without my Pos ANA which Im sure theyll run some diff. ones when I see Rheumie. but without that I have 4 or more of the 11 need for a diagnosis only I keep wondering whats the difference between scleroderma and LUPUS . However I would say it's just lUPUS. but then again Im not the expert although with all the research I do I feel like one LOL .....I have many ?'s.... :) Like this rash starting is freaking me out, like how can I help it and Im afraid Ill get it on my face and with my already low self esteem and depression it's freaking me out ..... I know that's the least I should worry about, but I can't help it. Not to mention my boyfriend for 1and a half years hes 34 never never had a girlfriend his whole life until me, he is the sweetest , kindest, most loving guy ever and im not just saying that, he really is, he's never yelled at me , but I feel bad his first and only girlfriend ever LOL and he has to worry about me all the time, my health and etc, and I know if he's as good as I say he is the rash wouldn't matter but I just cant help being insecure.....
02-01-2013, 03:57 PM
I don't know if your brain is running a mile a minuter there AndysMamaBear, but your post "sounds" like you might be. If so, take a slow deep breath of about 4 seconds, using your diaphragm to pull the air into your lungs, then exhale slowly through pursed lips for about the same amount of time. Try to slow yourself down. What is, is, if you know what I mean, and you can't do much about it at this point in time, so try to slow down and get ready for your appointment. Gather your thoughts and write them down for your doctor. Try to describe your symptoms and time frames of each's appearance. You might print-out the best of your pics, say a half dozen or so, and make yourself a "package", if for nothing else, to jog your memory when you go see the rheumy. The more concise you can be, the better. Take either a smart phone you're used to using, a notepad, or maybe even your boyfriend, which would be best, to the appointment, so that you can document what's said to you. I have a *real* problem remembering the simplist things anymore, and can get quite confused from doctor visits anymore, so I try to take my wife with me to all of 'em. Ask questions. If you don't understand an answer, ask again. However, do not expect an immediate diagnosis. It'd be nice if you got one, or maybe just an idea of what you're dealing with, but don't expect one.
I'm sorry you're having such a time of it with this. As information, it can take a long time to get a diagnosis of just about any of the auto-immune diseases, if that's what you have. All of them seem to try to mimic one another (and other diseases), and most docs don't want to start treating a patient until they're reasonably certain that they're in the ballpark with a diagnosis, since some meds help some diseases, and hurt others. Also, in my family of 6 siblings, I'm the oldest. One brother is dead from alcohol abuse, the oldest sister has lupus and various other AI stuff, in addition to cancer. The 2nd sister has RA, the 3rd is OK as far as I know. The oldest brother is OK, the youngest (the "baby" of the family at 45) has multiple AI diseases, including RA & Raynaud's, and at least one other undiagnosed one. I've got lupus, RA, etc (a list entirely too long). So "yes", AI stuff is at the least "familial", though you'll not find anyone say it can be "hereditary". My mom & dad neither one have much as far as AI stuff, but grandparents on both sides did.
Last but not least, welcome to WHL.
02-02-2013, 07:08 AM
...... Gather your thoughts and write them down for your doctor. Try to describe your symptoms and time frames of each's appearance. You might print-out the best of your pics, say a half dozen or so, and make yourself a "package", if for nothing else, to jog your memory when you go see the rheumy. The more concise you can be, the better. Take either a smart phone you're used to using, a notepad, or maybe even your boyfriend, which would be best, to the appointment, so that you can document what's said to you. I have a *real* problem remembering the simplist things anymore, and can get quite confused from doctor visits anymore, so I try to take my wife with me to all of 'em. Ask questions. If you don't understand an answer, ask again. However, do not expect an immediate diagnosis. It'd be nice if you got one, or maybe just an idea of what you're dealing with, but don't expect one........
i have repeated this advise,....
as it is worth reading again.
welcome to whl.
you are no longer alone,
we can help answer questions
02-02-2013, 05:04 PM
Thanks for the advice. I must say I got the info down good lol ok it's not funny but for the last 2 years I felt as though everything turned upside down. I went to a neuro Dr. who thought maybe MS and then asked about Lyme so I was tested for both. for the MS, I had 2 evoked response test and a cervial spine and brain MRI w/wo contrast. Everything came back normal as well as the Lyme. I think Ive been really stressing because Im a single mom of 2 kids, trying to work etc and it's so unbearable some days. The year and half before I saw Neuro I started a list of symptoms issues and in the last year Ive taken photos documenting all the physical symtpoms. I also get copies of result of every lab test, urinalysis, xray etc etc and add them to my Binder which I broke down into DR. Like PCP , Cardiologist etc. and also by date newest first. As Im sure you know, I feel crazy sometimes, people think I "claim" to be sick, UGH .... Or oh my Raynauds is just chapped hands... Well yes theyre chapped from restriction of blood flow. Which would make sense If I was outside skiing etc, but Im not, Im at home or at work .... It's crazy how people judge. I will say though unfortunately in a moment of weakness and after finding my face swollen, so many swollen lymph nodes in my neck etc behind ears everything I ended up at my Dr. thinking what it wrong with me , is it Strep or what I was crying and a wreck. He said I can't really do much for you, the rheumie is the one who can help you till then March 5 your going to have to deal, but he said I can give you a corticosteroid, if it helps then it's def LUPUS and I didn't want steroids at all they tried weeks before to give it I refused not only that I dont want any medicine that could give me a "false" positive or something cause it freaks me out. So I filled my script and I cant tell you within hours I was feeling some relief, and then 2 days later a lil better and day 3 I felt great ! I was like OMG I might even be able to go back to the gym although outta shape, which sux cause I worked hard to get myself running 5 miles a day and now I can barely walk to my car without being outta breath but my body this was the first time Ive been pain FREE in over 2 years. Not to mention , I have Saliva like wtf I forgot how that felt, I was buying this crap dry mouth gum but it never fully helped. In bad news he only gave me a 7 day supply. Now Im scared that on day 8 it'll be back the same or even worse ...I don't wanna go back to that .....However I do still have my butterfly rash (malar rash )? whats the difference? I still have my Raynauds, the weird lacy skin look and I still have the lesions on me and see a new one everyday sum still small. Is it gonna b much worse after stopping the prednisone? Ok I am a lil over the top sometimes lOL ....
02-02-2013, 10:48 PM
Reading your thoughts reminds me of how I was years ago, waiting for a diagnosis. It sounds so familiar and I admit it is a tough time - you are pretty much in a panic mode right now. It will get better. You will find a doc you like, you will find meds that help, you will find ways to cope; but it will take a lot of time. Years. It sounds like you probably have Lupus. Docs are very hesitant to confirm it, but you are going to a Rheumy now, which is the right track and the kind of doc that will eventually help you. One thing I want to say is to stop living from one doc appt to the next, thinking one of them is finally going to solve your problems. You are setting yourself up for disappointment; Lupus is diagnosed OVER TIME; this is because symptoms come and go and mimic other diseases. You are probably going to need to be on prednisone for a while to get you past this flare, but eventually with patience you may be able to manage your life in a way that will allow you to get off of the prednisone. Finding out your "triggers" and minimizing your body's inflammation are the things that can make the most difference and you can start doing that now on your own. I was stubborn, and a meat lover, so it took me a long time to admit it, but reducing the meat in your diet and adding as much raw veggies and fruits WILL help. Give it a try - you deserve some relief. I have read many, many articles over the years and admit there is so much out there - too much - because every person with Lupus is different, so their "tips" may not help you at all. One thing you may want to try eliminating (at least for a time) is any strong household chemicals, especially fresheners like Febreeze. Triggers can come from within your body (Estrogen) but also outside - so be skeptical of anything unnatural you use on a regular basis. Good luck - I hope you find relief soon!
02-03-2013, 06:38 AM
....... In bad news he only gave me a 7 day supply. Now Im scared that on day 8 it'll be back the same or even worse ....
if it has made the difference you describe....
phone the doctor and tell him how much it has changed you.
and ask your doctor for for a script to last untill you see the rhuemy.
02-04-2013, 01:54 PM
Ditto on what steve says.
You might mention your adrenal glands and thyroid also when you go to the doc. Chronic low thyroid can cause all sorts of similar issues, and can adversely impact your adrenal glands (as they try to make-up for the thyroid), and between the two, you'll feel like you've been run over by a bus, scraped up by a bulldozer, and thrown in the trash bin.
02-04-2013, 06:29 PM
Positive response to steroids should not be considered a "definite diagnosis of Lupus" and any Dr who says that should be whipped:wideeyed:
They are given for all sorts of illness ranging from a bad case of poison ivy/hives to bronchitis or pneumonia.They help the body to deal with and diminish inflammation.One of their main side effects is euphoria kind of that get up and go feeling.Or others get naughty and hateful.My husband does and they are on the no-no list for him.
They allow for the body to kind of suppress the "feel bad" it has going on which is why if you are on them long term you must be monitored/checked when you think you are ill-they can mask the symptoms of illness by suppressing it and allowing you to function at a somewhat normal level(although in the case of long term therapy you may notice more tiredness,etc but still just feel like your general loopy self)
So please follow up with all your appts and take all your info to the rheumy,make sure ALL of your medical records from every Dr you have seen for ANY of these issues has forwarded these records as this will give the Dr time BEFORE your appt to acclimate himself to your case and history-if you need to contact his office before the appt to go by and sign medical releases for the rheumy to request records then DO THIS-even the Optho you just went to and your follow up appt.Call the rheumys and tell them that you want to come by and sign releases for all treating drs so you can be sure that all available pertinent history/treatment is available b4 your appt.Make sure you dont forget anyone.If the Rheumy is requesting the information there will be no charge whereas if you go in and ask for your medical records you will be charged.This will allow the person who can do a thorough exam,document your history to have a leg up so to speak,see if any patterns are apparent and do extremely thorough testing that will help to narrow down what AI illness you belong in if they feel the illness is AI based.You should still keep a symptom diary/log with issues you are currently having but this allows for them to read Dr thoughts,etc. and have time to go thru your history b4 you get there with symptoms/issues that may go back yrs.Then labs can be ordered and honestly you will have a heads up on the people who assume that their records are there,get to the appt,the records arent,they are trying to remember everything they wanted to have be known.It also prevents the dr from having to leave the appt and have someone in his office request the records for reading AFTER you leave.
Call about 4 days before your appt with the list of the drs you submitted to have records released from and CONFIRM with someone in their office that they have them all.Name the drs by name-not "do you have my records" you meant 4 and they have 1 set and so say yes.Say Dr X,Y,Z?if not ask them to request again as you are coming in and want him to have all.
All info you can get to them before the appt will help make the appt go a lot smoother.
I hope you are able to get answers and get relief soon.
Just wanted to correct that steroid improvement doesnt mean "definite lupus".Kind of went a whole lot further than that but figured it might help you and hopefully someone else who reads this thread later.
02-04-2013, 07:18 PM
My PCP is one of those hmmm what can I say lets just give her some pills kinda docs. I literally have said no Im not taking that . I feel like they could care less what's wrong or happening or anything. They say you have a UTI so I see the labs and ok great take the antibiotic and a few weeks later back at it again ( oh because I feel I gotta pee 24/7 not that it's overactive like I gotta go right now just the I feel I gotta go so I do but i still feel i gotta go oh and it takes me like forever to even get started , that's if I can at all) Anyway his PA's nurse call and says got your lab and she said everything looks good. Oh ok, well I also got my LAB too and if with same symptoms I had a UTI before how when this lab is higher ok like !st was over 75,000 grams of bl,ah blah bacteria and now this one is even higher at over 100,000 why did I have a UTI then and not now. My bf gets so mad at them because they just dont listen or care, def feels like a dolla dolla bill place.
ok it would be nice to have a diagnosis more for others than me so when someone asks or what not Im not like well I have hmm IDK and blah blah cause then their like UM...... OKKKKAAAAyy hmm... What I want is just to get some treatment that will finally help. Im hoping that since weve for sure ruled out LYME and MS that maybe itll help be a little easier (but I doubt) oh and my RA FACTOR was negative and from what I seem to see a lot of is negative result doesnt always mean NEGATIVE ,,