View Full Version : newbie here--symptoms..no diagnosis yet...advice?

09-12-2008, 07:40 AM
Hi there I'm a 20 yr old mommy of a 1 yr lil boy. I have had leg pains/aching since i was between 8-10 yrs old that I remember. I thought it was growing pains until just recently when my symptoms started again. I also have started experiencing other symptoms which I thought were due to a 2 yr depression I had at age 15. My symptoms include:

-weakness(whole body and so bad sometimes i can barely move)
-fatigue(during episode and just am ready for bed every night)
-shakiness( i was told my fasting glucose level is 72 so i have drops from time to time but i check my bs when i have episodes and its normal)
-headache(i also check my temp which is normal each time)
-sharp pain or aching in joints/bones(pain brought me to tears one night it was so bad)
-nausea if i have eaten recently before onset
-lack of appetite
-cold and sometimes purple hands and toes/feet
-pounding heartbeat felt through chest
-warmth feeling in entire body but concentrated in legs(thighs mostly), arms, face and ears...which sometimes flush red...(this also happens when i'm nervous, hot, etc....could this be any form of rash??)
-dizziness when standing
-hard to concentrate or spaciness & forget things almost a second after going to what it is i needed to do
-muscle soreness & stiffness usually in the mornings
-and this last episode my arms felt half numb similar to when your feet fall asleep only i wasn't doing anything to cut off circulation.

along with these symptoms i feel with almost every episode unless i catch it very soon from onset and sleep it off(which is the only thing along with tylenol that seems to help)...i also have experienced things such as:

-chest pain(sharp & comes and goes or even sharp when breathing in. It can come along with the episodes but not every time. sometimes occurs by itself randomly.)
-mouth ulcers in mouth and throat..sometimes both which are always painful and last a week or so
-I notice when I'm on my feet alot or out in the heat alot my feet tend to swell slightly and the veins are more visible.
-i had a heart murmur which i was born with that was said to be gone when i was 2 but was found again at age 15.
- I had 2 seizures mysteriously at 15 which no diagnosis has been made for. Still have abnormal brain waves and occasional eye twitching from it esp. if really tired.
- had slightly low red cell count and diagnosed with iron def. anemia at 15 as well.
-had 2 yrs of a bad depression
-Had a miscarriage at age 18 for no known reason
- Got pregnant with my son 4 months later and had my water break prematurely at 27 weeks...had him 6 weeks later by scheduled c-section...no diagnosed reason as to why premature labor happened.
-2 days ago my wrist starting hurting and feeling sore...sometimes i would feel the achiness in it...it seemed to be only slightly swollen if compared to the other wrist joint but you couldn't tell by looking at it...hand turned purple last night and cold compared to other hand...tylenol helped but its still sore today although slighty better...hurts to put pressure on it etc.

This is everything I can think of off the top of my head. I went to my dr a little over 2 weeks ago and got bloodwork done. She is testing for things such as lupus, rheumatoid arthritis, lymes disease. I know she did an ANA test and ESR test that I remember. I also had a symptom of smooth tongue which she is testing for vitamin deficiencies and anemias. I go this coming monday for my results hopefully and had rescheduled my appt from the 25th of this month to then for new symptoms. Just wondering any thoughts etc or just someone who can relate :) Thanks so much and God Bless! -Brittanee

09-12-2008, 02:40 PM
Welcome Brittannee

It sounds like you have a doctor who is listening to you, a wonderful thing. Often we bounce to several who have told us "it's all in your head," and prescribe anti-depressants.

Keep a log of your symptoms so that your doc can keep that in consideration as you're going through all this testing, and hopefully you'll have an answer soon. Sometimes just having a LABEL helps a bit. At least you know what you're dealing with, and how to treat it.

Many hugs, please join in the disucssions on other forums as well -

09-12-2008, 06:07 PM
yes I agree with you. i'm very glad she is paying attention to me. I actually have made a list of my symptoms and am taking it with me monday to my appt. I plan to make it a lengthy appt to get all the info out in the open etc. I want to thank you for your reply and support. Lord knows we all need it :) God Bless! -Brit

09-26-2008, 12:58 PM
Hi Mommyof1...

How are you....

Welcome...since the site had been down, we have been lagging onwelcoming people, you to our family...warm hugs.

You've have been having a rough go it...how did your appointment go on the 15th..was it that Monday? No news, good news, okay news? Finding a regime to get your symptoms under control? Diagnose? Do tell....

Many of your symptoms ring true with Lupus and Raynauds Syndrome.

Its Friday hope your week has been great, good ...not worse..

Be well,

09-27-2008, 04:01 PM
Keep track of all your symptoms daily and rate your pain daily. Keep going to the Dr. dont give up. I gave up for awhile and now I am 49 and newly diagnoised after years of pain.

09-27-2008, 04:28 PM
Welcome Brittanee

I'm 48 yrs old female, my mother had lupus and my sister has lupus.

I have not been diagnosed as my rhuemy thinks lupus is a catch all that doctors use when they dont know what is wrong with you....in short...she's an idiot.

We have a shortage of rhuemy's here so I'm stuck with her for a while.

My advice, push for answers. If you don't feel you are being taken seriously speak up and push the point. It's your health and your future.

Welcome to the board, it's a warm supportive bunch here. I love them to bits.

09-29-2008, 01:14 PM
thank you all for the support :) I found a new symptom today. Puffiness under the knee caps along with the achiness that comes and goes and a constant discomfort. I noticed a while after coming across the "swelling" (not sure if its swelling or what) that I had the warm feeling from my knees and it radiated up into my thighs. Could this have anything to do with kidneys as I thought kidney involvement only brought swelling into the ankles. I also have noticed my symptoms seem to occur one or two days a week and the days they occur come and go throughout the day except for the joint pain which is felt everyday and comes and goes. Comments and suggestions are very welcome :) -Brit

PS. Im starting that diary and doing it for the whole month of oct. until i see my first rheumy nov 12th. hopefully ill get some answers.

09-29-2008, 01:22 PM
:( Mommyof1

Sorry to hear about your swelling. Sounds like your knee joints are kicking.

The hot spots are from joint irritation. You'll want to put cold compresses on the hot spots for about 10 minutes, when ever you notice them.

The swelling is probably from the joint being irritated. Your body will flood the joints with fluid to protect them.

Get in to see your doctor, have some Xrays taken.

You can go to the drug store and buy a soft wrap around knee brace. It will help with pain while walking and doing chores.

There are may reasons why fluid can build up, but coupled with hot spots...sounds like arthritis.

Let us know how you make out with the doctor. :)

09-30-2008, 01:33 PM
Thanks :) I will keep ya posted and try some of your remedies! *hugs* and God Bless -Brit

10-20-2008, 05:50 PM
Hello Brittane

How are you...just checking in on you...seeing how your month of journaling your symptoms have been?

Noticing any correlation with your day, eats, to when you have pain...

How are those knees...Did the remedy for your swelling work?

Be well....

10-22-2008, 02:21 PM
Hey there...things have been worse to be honest. Besides today and yesterday(which Im assuming is because I havent been outside much and have been sleeping alot)I have felt bad everyday at some point. Usually in the evenings and having to take ibuprofen everyday which is seeming not to help. I found a new symptom weeks ago...a rash...the malar rash im assuming. It looks like a sunburn...its a red color, flat, no bumps etc. On my cheeks and the bridge of my nose, my arms, and sometimes my ears and neck(there it is usually lighter than the other areas.) & chest(its usually blotchy here). It is usually accompanied with hot flashes and cold chills. I also get weakness, fatigue, nausea and tingling in my hands and arms. I feel very spacey and "out there." I have been recording everyday since oct 12th but havent found anything food wise to cause my symptoms however it looks like the sun may have an affect. The first time I noticed the rash I had been in the car for 2 hrs going to an appt with my mom and noticed it after sitting in the drs office for about 10 minutes. I am eager to get to this appt and am hoping I will get a good picture of the rash to take with me. Im so scared my flare will go into remission and I wont be able to take my symptoms with me to the dr. I noticed yesterday my abdomen feels a little funny...like a fullness or discomfort and sometimes sharp pains where your spleen would be. Its also kind of puffy where my liver is. So idk. Today and yesterday Ive felt ok minus some joint pain and being tired but Ive been sleeping more and not been outside much. Thank you for checking up on me :) I will be sure to keep you posted! Im counting down the days till my appt nov 12th & am going to try and enjoy my 21st bday nov 7th before then. Take care and I hope all is well as can be! Thanks again and God Bless! -Brit

10-22-2008, 02:50 PM
Hi Brit,
I was reading your posts here. I hope that they can give you some good answers at your appointment. It is good that they are testing your for Vitamin B12 deficiency, due to the smooth tongue problems. I am wondering if your tongue is sore. Do you get the sores in the corners of your mouth that will not heal? I know I had this going on big time along with serious memory problems and weakness and Neuropathy that was horrible right before I got diagnosed with Pernicious Aneamia and now I have to take B12 shots every month for the rest of my life. It seems like you are kind of young to have Pernicious Anemia, but I guess it is possible. It is better to be checked for it and if you have it to get treated for it before is causes serious damage to your body. It sounds like you have Lupus too and that you are sun sensitive which is common with Lupus. I hope that you get some answers when you see your doctor. Please keep us all posted ok.


10-22-2008, 07:38 PM
Hello Brit!

Just finished reading all your posts. First of all, welcome. :) So many of your symptoms in your list are just like mine. Way before I was officially diagnosed with SLE lupus (Diagnosed Feb 06) I noticed how the sun affected me. First of all, my face, especially my cheeks would turn flush, almost deep reddish color. I also felt like all my energy was sucked out of me. I felt faint and weak. Then the aches and pains started, fingers, knees (had to go to a orthopaedic MD to get my knees checked out-felt pain around my kneecap, felt warm to touch, etc. Tried out physical therapy for 2-3 months, didnt work for me.

In the beginning I had the low-grade fever 102F for over 3 weeks. No idea why I felt that way. Had the chills. Felt so weak, no appetite, felt horrible. Had to call out of work alot. Swollen achey fingers and knees when I wake up in the AM. Then the infamous "butterfly rash" appeared on my face. The worst is when I lost some of my hair. I cried. :cry: After numerous bloodtests, urine tests, a kidney biopsy (my kidneys were affected) I finally accepted that I had SLE Lupus.

I have my good days and my bad days. And I have those days when I just want to hibernate in bed all day. I never know how Im going to feel the next day. I take it one day at a time.

That's great that you keep a journal of all your symptoms. Jot down all the questions you want to ask your doctor as well. So when you go to your appt, you'll be prepared.

Good luck and Welcome again. :wink: Please keep us posted.

sara akhtar
10-23-2008, 09:10 AM
Hi Brit
So sorry you are going through such a bad time. How's it going now? Any closer to getting to the bottom of it? I'm awaiting diagnosis too and I think it must help a little to have a peg to hang our symptoms on - we can then be proactive and tackle thing head on.

Keep us all informed of your progress.

Take care


10-27-2008, 11:57 AM
I just wanted to thank you all first for your posts. Knowing ppl can relate is great and I really appreciate the support. Anyway, I used to get cold sores in the corner of my mouth or have the corners of my lips crack or seperate and it would come and go. I keep chapstick on virtually all the time so it doesnt happen as much anymore however the mouth ulcers are a problem. Ive had two episodes of painful ones in the past 2 weeks and I also have some on the top inside of my lip in the front that are painless but have been there for over a month. I finally noticed the butterfly rash too. I went to an appt with my mom one day and we were in the car for 2 hrs prior. I kept complaining it was hot and getting hot flashes. I'll be 21 nov 7th and no menopause in my family till the 50's so thats not it lol. Anyway, When we got into the office I was waiting with my son for her and noticed a red rash...not light but not too dark either..looked like a sunburn on my arms, face(esp nose and cheeks) and even spotted lightly on my stomach and thighs. I showed my mom when she came out of the office and i asked her is this a rash? and she said yes. We got out to the car and it was gone just like that. I had joint pain and just felt blah earlier in the car as well too. There have been a few other episodes of this "rash" since. It is flat with no bumps and looks like sunburn. Ive even had it burn like sunburn only it feels like its under the skin not on top and it doesnt hurt to touch. I had one real bad episode where I felt weak, fatigue, joint pain and warmth in my body with hot flashes and cold chills and the rash was very red then, covered a lot of my face esp the nose and cheeks and towards the jaw, my ears which also burned,the areas i mentioned before and the neck which was lighter than the rest and also the chest which was blotchy compared to the rest. I just recently started having the depression issues so bad I had an anxiety attack and had thoughts of suicide the other night....I really want to get to this appt..its getting hard to deal with esp with few means of support...thanks for thinking of me and lending your ears :) Im trying to deal with this....the best I can. Oh yeah, has anyone ever felt so weak muscle wise that you go to even fold clothes and your arms get tired like youve been working out? I get like that sometimes..there are many other things that I have written down...hope everyone is well as can be and I hope you get a diagnosis soon! When is your appt? Take care all. *hugs* & God Bless -Brit

10-28-2008, 07:18 AM
Hi Brit!

Yes, there have been days where I feel so drained and tired. The normal things I do like the laundry, foodshopping, making my bed, etc. seem so strenuous and impossible. During those days, I have random aches and pains throughout my body, whether it be my neck/upperback, wrists at times, knees, you name it; almost feels like a muscle soreness you'd feel after you worked out at the gym or something. :? My hips and knees also seem to ache and get stiff mostly when I sit for a while like during dinner with friends or a movie. Gosh, how old do I sound like complaining with all these aches and pains. Im 32 going on to 82. :(

10-31-2008, 12:27 PM
Im only going to be 21 nov 7th!!! I feel like 71 at times lol. I took feel all the things you mentioned. Its horrible. Any remedies for painful mouth ulcers? I get both painful and painless ones. I get the painful ones usually from biting the inside of my mouth when eating. Ill do that and a few days later theres one. This time after a few days of doing that I developed two real small ones close together then they grew together over a few days and now it really hurts...just wondering if theres anything I could try besides orajel? maybe something that will help them heal quicker? Anyway, thanks for sharing with me...I feel the same way so I know your pain :/ Happy Halloween and hope you have a good weekend! *hugs* -Brit

10-31-2008, 12:37 PM
Hi Brit,
When I get the painful mouth sores I use Zilactin B. It works pretty good. This what my Rheumatologist told me to use and it helps a lot.


11-12-2008, 12:46 PM
Hello all. I just wanted to touch base with you about my appt today with the Rheumy. He pretty much told me I am double jointed and it could cause discomfort, went by my labs which was an ana and esr done by my pcp months ago which were negative and said I am pretty healthy even though I told him about all my symptoms. He said I should go back to my cardiologist and get that info and see if its not all from my heart murmur. I feel like he didnt believe what I was saying. He wasnt even going to do blood tests until I mentioned it and he said "well even though I think these will come back normal here ya go." He did the antiCCP antibody, the c-reactive protein, sed rate and parvo virus 19 IgM & IgG. Not sure when Ill get those back but he said "Ill see you back in 6 months to see if you feel any better." Im thinking what?! so I just get to sit and enjoy the pain I guess. He asked what I take for pain and I said advil & that there have been times I took 2 ibuprofen and an advil and it only dulled the pain and he said "oh." I didnt get any pain meds or anything. What are your opinions? 2nd opinion? Is it all in my head? lol Dont know what to think and I am frustrated!!! I will post again later. Take care. -Brit

11-12-2008, 07:16 PM
Hi Brit...

First of all Happy Birthday. I missed it.....hugs.

Second, find another Rheumatologist. I feel awful..here you have been waiting for this appointment to be told you are double jointed. *&%#@! Huh? Insane...

Did anyone go with you to your appointment? Sometimes when the appointment isn't going too swell, we can have someone step in, keep us focus and be an advocate for us when we feel we are not being heard. I hope you have that somebody. It can be intimidating being a patient in their cold cubic room, with the fluorescent lights buzzing...draped in a paper robe....wondering what time is it. Did they forget I was in here?

Yes, seek a second opinion, actually the first because his hardly seems worth even mentioning even as a thought.

No, it isn't in your head....never doubt yourself or what your body is telling you.

Call his office in one week if they have not called you with the results. If and when they get them, request a copy.

Also, if you can not get into see a Rheumatologist again, soon...see your Primary and ask for a prescription pain reliever for mild pain or....he could also run a battery of tests..one doesn't need a Rheumatologist for that.

Aleve is the OTC dosage for prescription Naproxen many of us are on or have been for inflammation. Prescription strength is usually 500 mg. Aleve for one tablet is 220 mg..take two. Suggestion only.

I am so sorry your appointment did go well..head hugs...

Sweet Dreams..

11-12-2008, 08:52 PM
A great big DITTO to everything that Oluwa said. Get a second opinion and/or find another rheumatologist. & demand that they give you treatment for your symptoms!

I do hope that you start to feel better soon.

Peace and Blessings

11-17-2008, 03:36 PM
Just wanted to say thanks first of all again to Oluwa and saysusie. I honestly came home and cried and wondered if I really was crazy. I didnt think it would have that effect on me but like you said I waited and waited for the appt to be shut down. I love your description about the office though haha. So true. Anyhow, I will def take your advice and am going to set up an appt with another rheumy. My son and I now are sick so that doesnt help and my jaw has been hurting since yesterday from chewing gum for a while but now today there is alot of pressure in the upper right gum in the back of my mouth. The gum feels swollen and its painful with pressure..any ideas what that could be? Thanks so much for the support I will definitely be seeking someone else for my "first" opinion lol. Take care and God Bless. -Brit

11-17-2008, 04:10 PM
Hi Brit,
I am sorry to hear about the way that the Rheumatologist treated you. I would have been pissed off big time and I don't think that I would have been very kind to that fool at all. I have had lupus nearly all of my life and boy for years I got the royal runarround until I decided enough is enough already. I had to learn to speak right up and be pretty ugly about it, but it was affective and I got all the tests they could think of ran on me for Lupus and yup I had it. I hope that you do get in to see a different Rheumatologist and that this time they listen to you. Ask the new Rheumatologist to run tests also to look for Sjogrens Syndrom due to the jaw pain along with all the tests imaginable to look for Lupus. I wish you the best. Please post and let us know how it goes ok.


11-22-2008, 11:27 AM
hey again. thanks for being understanding. The tests ive had so far that have come back normal are the ana, esr(twice), c-reactive protein, anticcp antibody and parvo virus IgM and IgG. Like I said all those were negative..what other tests should I request for? Im not really sure how to go about talking about everything with the rheumatologist and almost feel dumb taking a list of symptoms in there but I know I have to. Are these normal feelings to have? Its almost like the drs are intimidating because they are supposed to know "everything." Thanks again for the support. The jaw pain went away after a few days but I noticed my jaw does tend to get sore from chewing gum for a while and my teeth even become sensitive like my mouth is tender or something...not sure how to describe it lol. The cold weather has also brought on numbness in two of my toes at the tips. I have a bad headache today and thought it was from needing to eat but I did and it has gone away some but not completely. I have two spots on my top lip that look like ulcers without the really red around it..maybe a little bit but not much and they are painless. they have been there over 2 months now since I first noticed them. Even if it wasnt lupus what would cause them? Any ideas? I also cleaned yesterday and woke up sore and stiff from it and my wrists especially the left one is sore. Im keeping a daily log of how I feel and what I eat everyday because my primary dr just diagnosed me with allergies so im on everyday meds for that and she mentioned celiacs disease or an allergy to food which may be causing the ulcers. Idk what to think about all that. Well sorry for rambling. Hope all is well with everyone. Take care. Hope to talk soon! -Brit

11-22-2008, 12:57 PM
Hi Brit...

I would say it is normal to feel intimidated by doctors. We do feel vulnerable in their office..not just because we are covered in a paper garb. But because we hurt, we are not well. Needing help.

Don't ever feel dumb, one because you are not. We can't know everything about anything, The older I get the less I realize how much I know. And two the doctor would appreciate a list, I believe. The list will keep you focus on what needs to be said and will be a very informative, telling tool.

Being a new patient...time should be allowed for a lengthy conversation. To be evaluated. To develop somewhat of a rapport. And before you leave, check over your list to ensure nothing was missed. Ask questions. Be frank and direct. You are hiring him for his services.

Bring someone with, so as to give you confidence, help to keep you focus...to remember the conversation, to write down what the doctors say.

Ask...if it isn't Lupus, what other diseases are you ruling out. Such as Fibromyalgia, Hypothyroidism..Sjogrens, Mixed Connective Tissue Disease.....

Many have the lab work come back in the normal range and are still symptomatic. Labwork is only part of the diagnose...a small piece of the puzzle, but not thee diagnosing tools. Symptoms are the other. That is why it is important for the list and also for him to conduct a physical.

Feel, palpitate your neck, your muscles, joints and etc, look at your skin..take your vitals, your history (the list).

Other autoantibody tests are anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti-La [SSB]) and also Anticardiolipin antibody test.

Maybe you need to be tested for food allergies. Skin prick. Have you ever done the food elimination diet to see what may cause the allergic reaction?

To diagnose celiac disease, doctors will test blood for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but celiac disease is still suspected, additional blood tests may be needed.

Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.

No apology accepted for rambling. We would have pages of I am sorry if that was allowed. I ramble, as you can read too...

I hope you are enjoy the weekend. I am...did a bit of shrub pruning and purchased grub supplies for Thanksgiving. Just my husband and I and a 12lb Young Butterball.

Home or out for the holiday?

Happy Saturday...hugs.

11-25-2008, 01:32 PM
Hi there. You are a sweetheart if you dont mind me saying so :) I really feel like you and others make me feel so at home when the people at home dont understand how you feel. I have not done the elimination diet. I am due to see my primary again in 3 months I am keeping the diary of symptoms and food and will probably condense it and put it in a notebook she can have to view over as well as write a list of my symptoms I have that she can look at too because I never really got to state everything I feel with her at the last few appts. One strange thing is that my monthly was due the 21st and besides one bout of light cramping that day it never started. A pregnancy test that night was negative which I knew it would be. But it didnt start until the 24th and I am starting to feel really tired like I was before which had lessened up after the iron tablets I thought. That started the 22nd and has been the same since. It was bad enough the 22nd I had to take a nap which I havent had to do in a while. I also thought the shortness of breath was gone but have also experienced that a little more the past few days. As far as celiacs disease, I read up some on that. I also checked out a few medical books from the library here and have looked into what could possibly be causing my symptoms as far as disorders and diseases go and absolutely nothing else fits all my symptoms from past history or present except lupus. Everything else is a combo of things which I know it can be but Im still looking. They arent kidding when they say it could be anything lol. Its so frustrating. Sometimes I sit and wonder if little things like how my eyes twitch since I have had my seizures(which I just found out is called narcolepsy) isnt something important. Id love to know why I even had the seizures. Things are so tough sometimes grr. Before I get into all that though, onto something else. Thanksgiving day we are eating at home with the family, my bf and I and my son. Then friday morning my son and I are going with my dad and brother and sis to his house for a weekend thanksgiving with his family. My bf is staying home to go hunting lol. How about yourself? I hope you have a wonderful holiday. HOpe to be talking again soon and if theres anything I forgot I will reply again :) Take care and Happy Thanksgiving! -Brit