no one can figure out what's wrong. 24/f. symptoms are debilitating. PLEASE help!!!!

[lovemydowncomforter]

ever since i was a kid, when i get tired, (without any bodily exercise), only one leg ACHES. as a kid it would happen when i was very very tired, not due to running around or anything, but just due to not having enough sleep. it was a very intense and deep pain, like it was inside my bone. it was from the front of my ankle up to below my knee. and feels like a "heavy" pain, almost like there's too much fluid in there. (i've always been very thin though, there's no swelling when it hurts.) it is painful enough to keep me from sleeping even when i am exhausted.

when i got to be about 15, i started getting pain in my hips in the evenings, the same deep "inside your bones" kind of pain, but not a heavy fluid-like type of pain. VERY painful though. this pain eventually radiates down my legs. usually it is just one hip that will hurt, but which hip hurts changes based on the incident. usually it will not hurt two days in a row. i'd say when the hip pain was at it's "prime," i got it every other day or so.

i'm 24 now and didn't get any hip or leg pain for about 4 months after stopping a medication called a beta blocker. we thought it could be triggering the hip pain. (beta blocker induced lupus runs in the family.) the last 4 days i've been having major pain. it started the first day with my right leg hurting like when i'm tired. it was really bad all day, and felt better the next morning. was gone most of day 2. then the night of day 2 i got bad hip pain in the same leg (right). now i have the leg pain and the hip pain in the same leg the last 2 days. last night it was excrutiating.

no doctor can figure out what's wrong with me. some have even been so arrogant as to say i'm imagining it, but that's not the case.

in addition to that, ever since i was about 18, when the tachycardia set in, even when it was being regulated by a beta blocker, i have constant very intense fatigue. a trip to the grocery store and i need to rest for a few hours, and if i don't, my leg/or hip will start to hurt.

i've been tested for rhuematoid arthritis and autoimmune and have had everything mostly normal according to the doctors. my levels are not "exactly" normal, but on the high or low end of the normal ranger. they think everything is from anorexia, which i do NOT have. i cannot keep weight on no matter how much i eat. thyroid is normal as well.

i do have inappropriate sinus node tachycardia, had my gallbladder taken out 3 years ago (even though i am VERY thin), and the last 3 years or so, my hair falls out in chunks. i always have patches of short regrowth all over the place now. i generally do not look healthy due to my hair. in the last few years i've gotten "dry mouth" and because of that have had to have a cavity filled in all my teeth except the front ones. keeping my teeth clean is nearly impossible. the dentist looked at me and said my spit is like cement :"> PERFECT. i am constantly thirsty no matter how much i drink. i cannot quench my thirst. i also developed random tingling and numbness in my hands and feet in the last year. i am finishing college just by sheer determination due to my tachycardia, fatigue, COPD (i don't even smoke, and it doesn't run in the family), and joint pain. what strikes me as most odd is that the pain is always only in my legs and hips, nothing above the waist, ever.


doctors, nurses, do you have any idea what's wrong with me??? suggestions on who i should see? i've seen probably 10+ normal doctors, 5 cardiologists (now referred to mayo clinic for the heart thing. beta blockers exasterbate these weird symptoms i have, and calcium channel blockers knock me flat while not lowering my heart rate). iwill see an endocrinologist on nov. 8th. is there any other specialist i should see? could this all be caused by something like chrons or celiac disease presenting with weird uncommon symptoms? or an uncommon autoimmune "something" that they're not testing for? everything felt much better within 4 weeks or so of stopping the beta blocker (except the tachycardia), i do have much more energy than on the beta blocker, even with a heart rate of 120+ all the time, but the joint pain and tingling and everything are now back full fledged about a year later.

this is me on the far left in the white tank top.
i've always looked healthy until now, in the last few months only, on some days i just look like i'm not well. this was one of those days.

http://img15.imageshack.us/img15/9504/61730476948259739672939.jpg

oh, and the other thing is that i have this weird dotty rash on my stomach that shows up every few days. this started about 3 years ago. it doesn't itch, doesn't carry a pattern, and isn't hives, it's just a bunch of tiny dots.

[lovemydowncomforter]

I went to my appointment today and he found a 1/2" nodule in my thyroid just by feeling. He biopsied it via needle biopsy and said most likely that sucker will need to come out as it's very probably it's causing hashimotos thyroidosis in me. Even if my bloodwork comes back normal he said it still may be the cause of everything.

He's near positive I at least have hasimotos, and could also have something adrenal on top of it. He ordered a book of tests on me..seriously..and we will find out more in the next 1-2 weeks.

It's so nice to have something to run with. I am relieved to at least have something to go off of. I guess the nodule is pretty big, most peoples are only a few centimeters. Mine is 1/2" and when he pressed on it, he said my heart rate jumped 20 beats. My hope now is that these tests indicate something specific so we can know what's wrong, and treat it.

The needle biopsy didn't hurt too much. Tonight though I am very sore, and oddly enough it is not so much as the biopsy site, but the back of my actual throat..on the side that they did the biopsy but 3 inches above the biopsy site..feels like it's on fire, and my ear aches on the same side. Is this normal after a needle biopsy? I'll probably call and ask in the morning if it's not better then. It really hurts, feels like fire like when you have strep. The area where they did the needle biopsy is just a deeper pain. Both pains started after the biopsy today, with the throat pain starting tonight. My voice is also a little hoarse and I'm coughing a little. He has asked when he did the second stick if it made my ear hurt and I said it had made my jaw hurt. I wasn't given any paperwork on what to expect going home or anything.

[lovemydowncomforter]

I finally got the results from the blood test I had done last year. The lupus test was negative and the Ana anti-nuclear antibodies test was positive. They put a note on there that the cells that carry iron don't carry iron very well. Most levels for almost everything were at the lowest number they can be to still be in the normal range.

I see the endocrinologist tomorrow. Thanks to everyone for all of your help and advice.

Caryopteris...have you had trouble with your hair falling out or teeth problems? Or joint pain?

[Caryopteris]

Well you have a lot of the same symptoms I do, and I have Celiac disease.  Celiac causes autoimmune disease.  The wide ranging symptoms come first from the malnutrition that the malabsorption causes, and then if you don't stop eating gluten, you start getting autoimmune disease.  Even if your tests don't show it, I still think you have it.  My tests have been negative, but my doctors say I have it and the tests are just not good enough yet.  Getting off gluten makes me feel better.  You can feel better too.  

Oh, also I have 1/2-inch leg length discrepancy, and I got rid of lots of my leg/hip nerve pain by putting a 1/2 inch lift in my shoe.

[lovemydowncomforter]

oh and testing for antibodies as well. and lyme. and rhematoid.
i'll probably end up with a referral to an immunologist and a rheumatoid doctor along with everything, but i'm hoping he can at least test for these other things first.

[lovemydowncomforter]

i go to the endocrinologist on the 8th and will definitely be asking him to test for vitamin/mineral deficiencies, in depth thyroid tests, and cortisol/catacholamine testing as well as what he thinks about the mass on my adrenal glad and/or testing for celiac disease. he's supposed to be very very good. he diagnosed some girl with thyroid cancer after she'd been to doctors about crazy symptoms for over a year and everyone said she was fine. i'm hoping he'll be able to figure out what's wrong with me and figure this out.

i'll let you all know what happens. thank you so much for your help and support. i appreciate it SO much!

[babygirl8066]

http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms



that is a link to the debilitating symptoms of Sjogrens copy and past into your browser this is where i got my information from...if anything check it out. good luck

[babygirl8066]

Hello Niki, My name is Jamie. I just wanted to suggest you get tested for Sjogrens Disease, if they haven't already done that, it's Jo1 Ab. Anti SSA Anti SSb and Anti Sm. Most of the symptoms you described above describe me almost to a T!! with a few exceptions and I have other symptoms. I have had two false positives for Lupus,(false positives or positive results for lupus is normal with with Sjogrens Disease).. normal but high Cortisol levels meaning one more point and it would have been positive and same with my Sed Rate...I have very long wavy hair, it falls out pretty bad also but not in patches as you explain. I also been diagnosed with mild arrhythmia/PVC's (previously misdiagnosed with MVP)"but MVP runs in family all of my aunts and mother have that." I had these tests in the fall of 2009 and they came back normal, my pain had gotten worse in the spring of 2010 and the RA Doctor had rerun these tests and some others even for Lymes disease as i requested. Lymes disease came back negative but the Anti SSB came back positive. I lost my insurance since then so couldn't make any progress with these positive results. I went today and had another array of blood tests done and one of them was a retest for Sjogrens. We will go from there. They ALWAYS test my Thyroid because I'm so thin and cannot gain weight or keep the weight on. My hips and legs hurt constantly just as u described along with other joints. I cannot take beta blockers because my body just don't like them. My blood pressure plummets and i pass out. After surgery on cysts on my ovaries I noticed all my pain had gotten worse, chronic bronchitis and sinus infections so on and so forth, I looked up Sjogrens and one of the symptoms is dry eyes dry mouth painful intercourse for women because of dryness and so on. Cavities are the biggest complaint of this disease..There is a list of sysmptoms (as yours and mine)  and other possible auto immune diseases that go along with Sjogrens  But if you get an answer please let me know so I can check into it myself. Good luck to you in your quest for an answer like you I've been looking for one myself still waiting still hurting.

                                     Thank you for you time sharing your pain,
                                                         Jamie....

[lovemydowncomforter]

it's just my guess that your hairs are not supposed to do THIS on top, lol. This is the longest the little pieces have every gotten. usually they're just an inch or less long. TONS of them. All these longer pieces fell out not too long after, and they were/are impossible to glue down, even with hairspray. Now, in addition, the short regrowth has kinks in it, and is very very thin and brittle.

http://img829.imageshack.us/img829/6438/dsc5057.jpg

[lovemydowncomforter]

another weird thing, and I do not know if this will help at all, but about 2 years before I started getting symptoms, I got this very weird spot at the base of my scalp. It was a little swollen, probably an inch in size, and didn't itch or hurt but felt bothersome. I almost can't describe. It was almost like a "skin crawling" sort of sensation where that spot was. I saw a doctor about it, they tested for cat scratch fever which came back negative, and they said "i don't know, come back if it doesn't go away." it went away after 1 or 2 weeks, I can't remember. It didn't look discolored, but it was under my hair so it was hard to see.

And last year I developed only my left eyebrow sweating, even when it's cold (like I'm outside and it's snowing), and you're not sweating at all. ONLY on my eyebrow, not my forehead or anywhere else. It's so weird.

The following year I developed a 1/4-1/2" cyst that stuck out about 1/4" off the level of my skin and later literally broke through my skin and drained itself. It was really gross, and oddly left a scar where it used to be.

The year AFTER this, I started getting joint pain.
About 2 years after that I got the tachycardia.
The following year I got my gallbladder taken out after a major attack, developed major fatigue and the rash. Hair started falling out.
The next year I got COPD symptoms, MUCH worsened fatigue. Hairloss same.
The next year I got tingling/numbness in my hands and feet, and my teeth went down hill. Hairloss got worse.
Now we're at this year and I can't keep my teeth clean for the life of me, joint pain is getting more often and worse, COPD seems to still be there but not as bad, tingling/numbness in hands and feet is worse and more often. Hair loss is MUCH worse. I usually only wear it pulled back so you can't see all the baby hairs. the regrowing hair is very thick at the base and thins out until it disappears, even on the only 1 inch long pieces, and the strands have kinks in them...I have always had stick straight hair.

[lovemydowncomforter]

Thank you for your reply. It's very helpful to have a reply from a doctor.

I have seen several primary care doctors about this and they've done a full blood panel, including testing for autoimmune. I've had my thyroid tested several times and it always comes back normal. I've been tested for rheumatoid arthritis which came back normal. I've had my sugar tested as well. 2 told me I was crazy and imagining things, which I am NOT, and one said I had anorexia and that's the cause, which I do not have, and I would know, of all people. Everything but my heartrate and my hair LOOKS normal, except that I feel terrible.

Should I see another different primary care doctor even though I've had them do full blood panels before? Can doctors test for b12, d, calcium, and magnesium deficiencies?

Since I do not have a gallbladder, it seems likely that I'm probably not able to absorb nutrients like a normal person would. They also think I probably have endometriosis, and haven't done the surgery to find out because the treatment would be the same as I am on now, which is supressing my periods. If I let myself get them, i have pain so bad that I turn white as a ghost, see spots, and if it's bad enough, my vision gets really spotty and sometimes disappears for a few seconds and comes back again, etc.

One symptoms that I forgot to add, that has gone away in the last year, was that I would start feeling like I was going to pass out, would have to sit down, very dizzy, and one or both of my feet/lower legs would start twitching/shaking, literally like it was jumping up and down without me controlling it. It lasted about 20 minutes and then would go away. This symptom happening lasted about a year, maybe once a month, then magically went away with no explanation.

I also have to eat every 2 hours or I start to shake. It seems like I can't keep my blood sugar up, but when they tested it via a blood test while fasting, it wasn't abnormally low, it just reflected how you would be if you were hungry.

[Dr. Kokil Mathur]

Hi
Welcome to the MedHelp forum!
The dots could be petechiae, which are pinpoint-sized red dots under the surface of the skin. They can result from autoimmune disorders, such as lupus or rheumatoid arthritis, bone marrow disorders such as leukemia, inflammation of the veins, as a side effect of certain medications. Since you have a family history of beta blocker induced lupus, get this investigated. Lupus may have started before you started beta blockers. Unexplained aches and pains coming on and off could be due to fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, Crohn’s disease, lupus, diabetes, hypothyroidism, H pylori infection, anemia, liver disorders, Vit B12 or Vit D deficiency and due to calcium or magnesium deficiency.
A comprehensive investigation is required keeping all the points in mind. Please consult your PCP for primary examination followed by proper referral. Take care!

[crackerjack4u2]

Hello have you been checked for Lyme disease?  With your symptoms the fatigue,hair loss, low weight,  teeth issues, heart problems, tachycardia, belly rash being on and off and pain it would be a good place to start. I had an instructor in college who wore a wig because she had Lyme disease and all her hair had came out, she too was in constant pain, very very skinny and could not put on weight.  A lot of the research I found covers ALL your symptoms.

With tachacardia also I can understand you having fatigue and weakness in your extremities because when the heart beats that fast it can't supply the body with enough blood thereby limiting the amount of oxygen to the cells which is transported by the blood.  


The items below came from an article by Dr. Virginia S. MD
Lyme disease was the reason that she had never regained the ability to sleep... joint (TMJ) pain, major weight loss, fatigue, muscle aches, and unexplained ear pains, that it became obvious to me.

I found this on another web site about a girl named jolola with Lyme disease who tried to tell the dentist about her teeth problems and the severe pain with treatment and it being related to Lyme disease,  and they wouldn't listen, here are parts of her story that will interest you:

so i clamped my mouth shut until i finally found a dentist who had recovered from lyme, and who would put me under and fix what has grown rampantly in just over 2 years into 21 or more cavities.

now, mind you, up until the last decade and a half ago, i have had dentists marvel at my teeth, relatively few cavities…not even one until is was 14 years old…and even then, when i got one, they did not grow, i could go three years with a tiny cavity that stayed tiny…until now.  

constantly high acid level of my mouth, my mouth is always dry, i drink water constantly, in amounts that surpass the recommended daily amounts…  both the acid level, and the dry mouth are both directly related to my lyme disease.

PLEASE check out these sites after you finish reading my comment:

http://arthritis.webmd.com/tc/lyme-disease-symptoms

http://www.ehow.com/facts_5941630_women_s-hair-loss-lyme-disease.html

http://www.topix.com/forum/health/lyme-disease/TL73IDJUF6B4EP8EU

http://*****************/question/index?qid=20080407155302AA6Sv1w

http://www.digitalnaturopath.com/cond/C351537.html

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/3455-extreme-weight-loss

(jolola's blog site her article on her teeth is the 2nd one-)  
http://lymebook.com/blog/treatments/mouth-dental-care-toothpaste/



I Don't know for sure that it's Lyme Disease but I Certainly Hope You Have This Checked Out and PLEASE KEEP ME POSTED.  GOOD LUCK HUN!