Since I got back from the beach I just dont know where to start with answering questions. Whenever I post a reply to someone I want it to be filled with lots of information and answer all of the questions they have asked me. I put a LOT of time into the answers, and I do research also on the side to back up what I am saying. I am so overwhelmed that I thought it would be a great idea if you guys could post your unanswered questions here? It would help out my eyes also, my vision isn't that great at all and if I do a lot of screen flipping they go all wonky and then I can't read anything and have to leave the computer
This is how you copy and paste your original posting question in this thread:
1) Look for your original post and click on it. Pretend that you are going to read a reply that someone wrote basically.
2) Once you open it point your mouse at the beginning of your question/comment. You dont need to highlight the title, the subject etc. Just start with the "Hi guys" or whatever you started with. When your mouse is in front of the sentence then:
3) Hold down the left side of the mouse (click on it but don't let go). You will see the words highlight as you drag it across the sentence. Drag it downward so that it highlights your whole question. Don't stop holding down the left part! Once you have the whole question highlighted then:
4) Let go of the left side of the mouse. Your sentences should still be highlighted. Right click on the mouse, and you will see: "Undo", "Cut", "Copy", "Paste" etc. Select "Copy" and then you can get out of there.
5) Click on my post, and then click on "Reply" like you normally would to reply to a message. Right click in the typing window and click on "Paste". This should paste everything that you highlighted.
Hope it works for you! If you have troubles, let me know and I can help you. I always look forward to your questions and you guys are so awesome. I love being a part of this website!! Thanks to Vee and Sam for helping out too, you guys are the BEST. I dont think you get enough thanks for the work that you do too. And to the rest of you that help out (I am terrible with names.. its the Lupus!!) THANK YOU TOO!!! Without a team effort we wouldn't get people on the road to diagnosis and treatment
I have posted here before, cause I sometimes believe I have lupus(PLUS,you people are so caring and......shhhh... and the nicest)
Anyway....I have been feeling crappy for close to 2yrs now, without a REAL diagnoses.I do have TMJ, MVP,OE arthritis(? never Xrayed)
I'm currently taking an anti-imflammatory,panteloc(stomache) and an antidepressant.
I have intemitent fatigue( meaning..always tired but sometimes more extreme), muscle and joint pain,occasional blurred vision(now have glasses) and gritty feeling in eyes,some chest pain on and off with palpatations,tremors,shooting headaches( sharp pain lasts less than a minute),Pain(or tightness) under L rib(spleen?),burning in different areas of my body(like I spilled a cup of tea on myself)menstral changes,twitching eyes and other muscles, cold hands and feet and turns white(raynauds?),bladder issues,extemely dry skin, I probably forgot the rest, cause I cannot remember anything(scarey,I have always tried not to be the dumb blonde...But I'm the poster child now)
I was feeling not to bad about a month ago, then I got stressed out over some issues.....and BANG.
My doc has tested me for MS,thyroid and lupus.She said once, maybe it was fibromyalgia. But I'm not satisfied with that, not that I want lupus, but I lean more towards lupus,and also after mentioning fibro nothing more was done. My blood tests were mostly negative, elevated ESR, low alpa1,thats all I really know as I'm from Canada and we don't get are test results.
Ok.... now for the questions...
Are the mouth sores like Cankers.. cause I have sores in my mouth but can't really see them, but when I eat it hurts( tongue and gums also)
every now and again I get these dry little crusty round red, size of a nickle, but usually 1 or 2 at a time, on upper leg or upper arm, not usually on torso.
Butterfly rash.... I have a red cheeks and nose, but looks more like a permanent sunburn, with little darker red circles on cheeks.
Fevers... well I don't really have alot of fevers....in the morning my temp usually is 95F....by evening it might 97.8-98.9F(which really isn't a fever)
Thanks so much for being here and most of all educating us
Thanks for your kind words! We are all here to help you out, and I remember your story very well. I really do think that Lupus needs to be explored in your case, you do have the symptoms and I dont think you have Fibromyalgia. I am from Canada too, so I understand what you are going through! You can get copies of the bloodwork from your doctor if you ask, and if they ask you why you need them just say that you keep your own files. My doctor has no problems copying stuff for me. Our charts belong to us, and its part of the freedom of information and privacy that we get a copy of everything. If your doctor isn't going to be supportive of your "quest for the diagnosis" then I suggest finding a better GP. My GP is amazing, she listens and does anything that I need. Your GP is the head of your care, and as such they have to be your biggest advocate. If you don't feel comfortable with your GP then I really would find out which ones are good in your area. It's SO vital!!!
The mouth sores you describe could be related to Lupus (I have had the invisible ones too!). I also would get checked for B12 deficiency and Iron deficiency. B12 deficiency can cause that awful tongue pain when eating, I have it and it really bothered me. What color is your tongue? Is it mainly white? If so, I would get your B12 and iron checked. It could also be thrush if your tongue is white, but I think its either Lupus related or B12. As for the rest of your symptoms, I also think that Antiphospholipid Syndrome may explain your Neuro stuff. I had severe memory loss, fatigue, "brain fog", headaches, tingling/weakness, vision loss, strokes etc from APS. YOu could have overlapping diseases... Lupus, APS, Sjogrens and Raynauds. As for the antidepressants... have you been diagnosed with depression or do you use them for sleep? Depression goes with Lupus and so don't worry about thinking you are nuts etc. Even if you were nuts it would be fine because having psych stuff going on goes with Lupus too! The doctors make us nuts AND depressed too. I hope they aren't writing you off as depressed and are ignoring your symptoms... if they are then you need a very fresh start. I went out of the province that I live in for health care, and eventually I had to leave the country and go to England! The doctors here screwed up with me wayyyyyyyyy back and they were all covering each other's butts. Thats why I stress the importance of getting your charts. I had "Conversion Disorder" stated as a potential diagnosis in my chart and I was so mad. Conversion disorder is a psych condition where you think you have a disease (or symptom) and in turn you lose the function of something. So, with me they thought that I really wanted to be blind and therefore I created my vision problem. Uhhh why would I do that!! There was evidence saying otherwise but they don't like dealing with that!
You need a good Rheumatologist (which is hard in Canada, believe me!!) and there are some that specialize in treating Lupus patients. That's the key.. they have to be Lupus specialists and not just plain Rheumatologists. Anyway! Its great hearing from you and I hope we can get you diagnosed and feeling well soon!
So glad you're here to help!! I have a question about labwork. I have had a positive ANA 1:160 but nothing else very revealing. I am wondering though what a chronically low MCV means in your CBC? That's the one thing that seems to always be out of range but my doctors never mention it so I don't know if it's significant or not but I thought I'd read that it can be a sign of iron deficient anemia, do you know?
I'm also wondering about a sore mouth symptom I experience occasionally. I get my share of mouth sores but every now and then my whole mouth becomes sensitive, it stings when I eat, is dry enough my tongue sticks to the roof of my mouth, sometimes my tongue is coated when I experience this. I also notice redness and "poofy gums" and will usually get tons of teeny little bumps along the inside of my lips. I just wondered if you knew what this could be from or what might be causing it.
Thanks for being so smart and wonderful! Hope you are doing well!
Ohh thank you so much Angelicbrat for replying,it is so unfortunate that the reason you are so versed on this condition is that you had to take such a long journey to find YOUR own diagnoses.
I can't really find a new doc, as I am actually one of the lucky ones that actually has a doc,we have a huge doctor shortage here in Ontario.
As for my tongue, it is not white nor do I have thrush I don't think, but it did hurt when I ate certain foods,but its not as sore as it was,but I'm real careful now(it hurt to even eat toast)
AS for the antidepressants...well, I don't think I need them(well,I did break down in her office, but that was due to feeling crappy all the time)But I do admit, I do feel better, only because I don't seem to stress over the little stuff anymore, but it doesn't help with the pain and other symptoms I have.
As for getting a Rhuematologist...well I have already been, he is the jerk who diagnosed me with oesteo arthritis(without any test , x-rays, nothing) I was in his office Maybe 15 min and then he stated if I lost weight I might feel better....rrrhhhh...if I felt better maybe I could exercise to lose weight, needles to say I'm not going back to him and he said to continue with your family doc, that He doesn't need to see me again.
Thanks for your wisdom and keep up the great work,
I have a question - any idea if a drop in prednisone from 12 mg to 0 mg might cause temporary problems w/menstral cycle? I did the drop (I'll spare the details, I know if was stupid and could've had disasterous results) about a month ago, then my period was late (I'm *never* late), then started spotting a week, had a few heavier days, then back to spotting since then. Think there's a connection?? (I could also be my first signs of menopause, I'm 46).
One more quick question...please
I know that you are really educated on bld tests.....does low alpha 1 globulin have anything to do with lupus. I have tried to research it but I get information about liver and kidney disease or COPD(lung disease)
As I have said before, I don't know alot about my bld work as I don't see any paperwork, but doc has mentioned high ESR and low alpha 1 globulin.
Angelic how are you doing, do you have time for a question? I have had a positive ANA count twice in 2003 highest was 1:320. Rhuemy treated me for joint pain with plaquenil and then methotrexate. Had to give up both of them because of reactions. Question, I now have had the last two ANA tests as negative, one while on plaquenil and the other after being off of it for 3week, does this make it impossible for me to have lupus???
I have joint pain, DNA is positive for lupus with ds and ss (on the second blood test with the 1:320 ANA) I have antiphospholipid antibodies and the dermie has told me I am photosensitive sense I get red and itchy in the sun. Being in the sun also can make my pain worse.
Thanks for the help, I hope you are feeling OK.
I know your question is for Angelic but I'm going to throw in here anyway. I have had 4 ANA tests done, 2 were very low pos. and 2 were neg. The Dr. has upheld the DX of Scarring discoid lupus with asst. mxct disease. He said the ANA isn't always pos. A Dr. must look at all symptoms with blood work.
Your chronic low temps would make me wonder if your thyroid condition is being treated effectively. Many hypo symptoms overlap with Lupus symptoms. I'm sure I've seen you on the Thyroid boards so you know much of this. Have you had your free T4 and free T3s tested and if so are they in the upper on third of the normal range? If not, you may need a med increase there. Hope you find answers soon.
Thanks Patience, I am convinced I must see another rhuemy since this one has done a 360degree turn around on my treatment and what he thinks is wrong. He was very sure of the lupus treatment and now thinks I need vallium and vitamins. I just wanted to be sure about the ANA and other things. Thanks for confirming what I probably already knew, I need another rhuemy!!!
Thanks Patience for replying,
You are right, I occasionally check out the thyroid board as I do have thyroid symptoms, but apparently all my bld work for thyroid comes back normal too. I don't know, I give up!!!
Thanks for replying, my giving up was more or less a figure of speech, but it IS so frustrating.
This is why I always return to these boards,all are so caring,even though your trying to find your own answers.
Can you get a new doctor without them seeing your old records? I am going thru this "I am just crazy" stuff myself and they do not want to treat me only the Rheum does and with my insurance he is un able to refer me to others.
I am sure if your insurance allows you can make an appt. with a new doc and go to see them as if for the first time. Only problem if you are taking meds from one doc you would want to tell the new doc of that so you don't OD on mixing the wrong meds. That kind of blows the theory of not having a new doc see your records cause I'm sure they will want to get info faxed from your old doc. Sometimes new docs won't do this but you never know.