im 17 years old. first problems started when i was 10 or 11. my knees were always hurting but the doctors just told me it was growing pains and it would go away, it didnt but i was dealing with it. well i havent grown in a couple of years and my problems have only multiplied. it really all started about a year and a half agoicouldnt do anything with my wrist for about 3-4 weeks, then i got this really deep, barking cough,(still have it), my mom said it reminded her of a croup cough.the only thing the doctors could tell us was that i coughed every time i swallowed something its calmed down a bit but not much. if i cough too much i get really short of breath, and i cant stand any kind of smoke. the cold didnt used too bother me but now it amplifies the pain making it almost unbearable. i get headaches, my joints have started getting really stiff in the last 6+ months which also only makes the pain worse. i have pain in every joint except my jaw but i have NO inflammation or swelling. my joints have started popping every time i move; big loud pops. bright lights and loud noises bother me, i have ringing in my ears. i have problems remembering and concentrating. i get dizzy, and have some balance problems i feel weak sometimes, numbness and tingling in arms and legs sometimes, my feet are cold and will turn a purply color(tried warming my feet up when i can feel the cold and i guess theyve been cold so long that it hurt). im short of breath sometimes, and my breathing is always changing(slow, fast, labored, deep, short normal). i have a heart arrythmia, where my heart will just race im not sure of the last time it was below 80, its usually between 90 and 120 but its gone as high as 160 before(resting rate). my heart will also pound so hard it feels like its going to jump out of my chest somehow. within the last few weeks ive had chest pain it will hurt for a few minutes then go away sometimes it comes back right away but usually not. its a sharp constricting pain, ill get short of breath and hard to breathe deeply. ive also had pain in my ribs where it felt like i broke a few and it hurt to breathe at all(the last time was a few months ago, but im sure it will happen again). im also always tired, and my sleep times are irregular, as in i usually no matter what i do or how tired i am cant fall asleep before 2am and i wont wake up before 11am at least. not very often do i fall asleep before then.
i had to drop out of school about a year ago because i couldnt get around, and for the last 9+ months ive been in the living room on the couch because i cant get up to my bed(i have a bunk bed). ive been to many doctors had countless tests done, and still have no answers. the only thing the blood tests showed is i have a homogenous ANA titer of 1:160, and am slightly anemic in that my red blood cells are bigger than they should be. they said i dont have lupus, and it cant be arthritis because of how long ive had it, that my joints arent deformed and that i dont have any inflammation or swelling. my mom and 2 brothers have fabry disease but thay tested me and say that i dont have it, we asked them if i could just have a different mutation and they said it was possible but not likely, they wont do the test. the rheumatologist i went toothinks it might be fibrmyalgia, but i dont think thats it and he cant prove that its it. they did an ekg, more blood work and xmore -rays about a month and a half ago and i still dont know the results. they know how to get a hold of us because my mom and brother are at that hospital every 2 weeks for enzyme replacement so i know its not that.
i just dont know what to do anymore, i dont know where to look, and it seems the doctors dont care to look. if they dont know what it is theyll throw out something plausible and tell me to take some pills and deal with it. ive been to physical therapy which only made it hurt more. i took aleve for about a year and a half before they stopped working by then i was taking 4-6 a day, and that was back when it was only my knees. since ive been on muscle relaxers which dont really help, and many other kinds of pills. the last one they gave me was neurontin, and lortab, they had me take three neurontin a day an up to 4 lortab with 1-2 tylenol half an hour before depending on the pain, well it hurt so bad that i was taking at least 11 pills a day sometimes up to15 it worked for about a month and i took it a few weeks after but it had stopped working. i even stopped it for about a month and tried taking it again didnt work. they said the next step up was morphine and they werent willing to give me that. the pills dont even make me tired or sick, where a couple of tylenol will put my mom out for the night. im not taking any pills right now because nothing theyve given me works.
i want my life back, ive tried to work through the pain and some days i can but others its horrible pain. im a pretty positive person and ill downplay the pain and symtoms to those close to me but i really need help.
I am so sorry to hear what you have been going through and I know it must be difficult at such a young age.
I have a question for you.... have you been tested yet for lyme disease and/or have you had viral testing (Epstein Barr Virus, for example) done ?
I'm not sure what is wrong with your red cells, but I can tell you that people who have Chronic Fatigue Syndrome (my diagnosis), were found to have abnormal red cells. Professor Barry Hurwitz said, “We’ve found that over 50 per cent of people with CFS/ME have low-normal or below-normal red blood cell volume,”
How is your fatigue level ? Are you more in pain or more fatigued ? When you wake up in the morning... do you feel refreshed ? And if you have a good day and push yourself, are you bedridden the next day ?
no i have not been tested for either of those or any viral things but i will ask the next time i go to the doctor, im not sure when that is as i still need to set up an appt. with a new doc. im tired a lot, some days i cant function but its not bad most of the time. i dont know if im in more pain when im tired as ive never thought about it, but im usually tired when i wake up and dont really feel refreshed i feel more like i want to go right back to sleep no matter how much sleep i get. yes if i push myself into doing something like walking around the mall with my mom, playing with my dog or just doing normal housework like laundry and cleaning i tend too hurt more and will usually stick to the couch. im not sure if im tired after as my memory has taken a vacation but i know i hurt.
If you are finding yourself getting frustrated with your physician and/or not getting better on treatment he or she is prescribing you, then I would consider googling, "Co Cure's Good Doctor List" for a list of physicians in your area. These are physicians who frequently diagnose and treat both fibro & CFS. They should know which tests to order and other things to rule out first.
I would also consider checking out the research on "fatigue illness" and "autoimmune illness" on this website. You may want to print this out for your physician and discuss with him or her. This is something fairly new and so your physician probably wasn't taught about this in medical school (Dr. Nicolson was a guest physician in MedHelp recently and discussed this)
Tests that Dr. Nicolson recommends for chronically ill people... Insurance may or may not cover this testing:
This is the research behind the treatment that is helping me and many others... even people with autoimmune conditions. You are so young... you have many years ahead of you and this is a promising treatment.. in my opinion. Treatment can be long, make you feel worse.... but this is set out to cure you and not just treat your symptoms.
At least you know, you have options.
Feel free to contact me or have your parent's contact me if you have any questions.
thank you for the info about this, i will look into to it and see where it goes. im so thankful for the support and information im finding here as its opening up more things i never wouldve thought about.
Wow girl, you need some help quick. Honestly, your story sounds just like mine except you have been suffering longer. I had problems for a year and a half. But the past year I had a PCP that really cared and was trying. That meant a lot to me.
I was having trouble getting a dx because my ANA was always what they considered low. Even when it was 640. Because all of the other lab was normal, they just couldn't figure it out. Then I read someone say on MedHelp that you could spend some time in the sun before your next lab (ANA) and it would make your lab go up...that is if you had lupus. That's what it took. I'm now on Plaquenil and feeling like I might could live after all.
"I am slightly anemic in that my red blood cells are bigger than they should be." Some of your symptoms could point to fibromyagia, but you definitely have some that would point to maybe something else. When you are as sick as you are, your sleep pattern is altered and you don't get the deep sleep you need, therefore fibromyalgia can be a secondary illness caused by the disturbance in lack of REM sleep.
web site on anemia: http://en.wikipedia.org/wiki/Macrocytic_anemia
Could it be that you have a latino heritage? Thus a condition called "Thalassemia" I am thinking I remember this correctly...I had a friend who's dad was latino who had this condition. You might want to google Thalassemia to see what the symptoms are.
You sure do have a lot of symptoms of lupus. There are 11 critieria for lupus. You must have at least 4 of these before a dr. can give a dx of lupus. Anemia is listed, but I'm quite sure it is low RBC and not abnormal shaped RBC. You can review these criteria @ http://www.lupus.org/webmodules/webarticlesnet/articlefiles/946-What%20I%20Need%20to%20Know%20About%20How%20Lupus%20is%20Diagnosed.pdf
As far as the cough goes, this is a copy of a portion of an article from : http://adam.about.com/reports/000063_4.htm
SLE affects the lungs in about 60% of patients:
Recurrent inflammation of the membrane lining the lung (pleurisy) is the most common problem.
In some cases, fluid accumulates, a condition called pleural effusion, and can cause stabbing localized pain that worsens when coughing, sneezing, laughing, or taking a deep breath.
Inflammation of the lung itself in SLE is called lupus pneumonitis. It can be caused by infections or by the SLE inflammatory process. Symptoms are the same in both cases: fever, chest pain, labored breathing, and coughing. Rarely, lupus pneumonitis becomes chronic and causes scarring in the lungs, which reduces their ability to deliver oxygen to the blood.
A very serious and also rare condition called pulmonary hypertension occurs when high pressure develops in the vessels supplying blood to the lungs.
Hang in there kid. We're on your side.
Praying for you.
hi, lupus was actually one of the first things things they thought i might have but then said that i couldnt because i dont have any inflammationor swelling. some of the symptoms fit but some dont, do you have to have inflammation to have lupus?
as for fibro if they can prove that i have it then i can accept that, but to me it seems kinda like a catch all, if they cant find anything else then i must have fibro. i could be wrong but thats just the way it seems because thats the way it was suggested to me. they couldnt find anything wrong so he thought it might be fibro annd recommended i see a psychologist.
i am not latino and do not know of any relatives that are.
im glad your doing better, and hope you keep getteing better
I used to often have pleurisy like symptoms and in addition to having CFS, I have a high ANA titer (indicates autoimmune issues). My ANA titer is 1:640 (speckled pattern). I'm anxiously awaiting to have it repeated and seeing if it is still that high.. especially when I finish treatment.
What I learned is that 25% of people who have CFS... have a positive ANA titer and "some autoimmune problems". There is a theory, and one that makes sense to me, as to why this happens. Two-thirds of CFS and fibromyalgia patients have tested positive for L-form bacteria (mycoplasma) infection. (source below). According to Dr. Nicolson's research... "when mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response." So that explained to me why I was having lupus like symptoms and after years of having CFS... had a positive ANA titer. My specialist agrees and he was the one who initially put me on the treatment that I believe is restoring my health. It is not an easy treatment... it is the same treatment that lyme patients are on, because it is killing the pathogens that are making me so ill. It requires a commitment and hard work.. but the pay off, at least for me, has been huge.
At least you know... you have treatment options and you may have answers now.
Could you tell me what herxing is? Forgive me if it's something everyone else knows but me. He He.
Yes, I thought 640 was getting on up there, but I honestly was knocking my head against the wall with these doctors. The last count was 2,560. So no one could say it could be something else beside an autoimmune disorder.
I am interested in what all you have tried that didn't work so well and what you have tried that has worked. If you don't mind....Thanks.
i kind of wish my ANA would be higher so they couldnt say it didnt mean anything as they dont consider mine high enough, and i guess its not comapared to yours but it is still there. i will look into this and see where it leads as im too tired to understand half of what im reading, darn cold kept me up all night.
im happy to hear that the treatment is working although i wish it was easier for you, but at least it is working. i wish you luck on the test, and thanks for the info.
Actually, your ANA is high enough. These drs. just are reluctant to give a lupus dx. They are kinda giving you some time to make sure you have long term insurance and life insurance. Not that you are going to kill over anytime soon, but it is imposible to get life insurance after a dx of lupus. Last winter when I thought I was dyeing, I purchased some life insurance. It actually was harder than I thought it was going to be, but I wanted my husband and children cared for if I didn't make it. I'm so glad I went ahead and bought it.
I knew I had read something about the swallow mechanism being affected with lupus. I read it in a book called "The Lupus Book". It says persistent sore throats are common in SLE along with esophageal problems. There are two types of esophogeal problems. Those related to muscle dysfunction and symptoms related to reflux, or heartburn. Patients with certain rheumatic diseases such as inflammatory myositis, dermatomyositis or polymyositis have a high incidence of dysphagia (or difficulty swallowing). These people seem to tolerate solid food quite well, but liquids may come up through the nose and are sometimes aspirated into the lungs.
I know you didn't really want to do school today, but you are getting a crash course in anatomy...your body is the subject. The coughing could be caused by acid reflux. Do you ever have that burning sensation down in your throat? Or do you have trouble swallowing? Let you dr. know. Even the small things that you think are insignificant. I get what I call erruptions on my body, but especially on my face. Of course, you are at that age where you get plenty of things like that, but these are different. They never form into a head like a pimple. They just are really sore and go away pretty quickly. That is if I don't mess with them. I also get sores in my ears and in my mouth. Some people get sores on their head. Lupus can affect everypart of your body in every way. I am cold all of the time (extremely cold), but occasionally I have a hot flash. And yes, lupus is causing both. Becuase it can affect the vascular system, constricting the vessels. Just think of all the biology you are getting...compliments of lupus. I know, pretty corny, but you have to look at this a little wierd or you'll sink with this stuff. I know I'm rambling, but horrible headaches are also part of lupus. They are different than other headaches. They seem deep and wave like. I can't describ them. If you have them you'll know what I'm talking about.
Sweetie, we want to be here for you in every way. If you don't understand anything, there are websites where you can look up medical terms. That's how you will learn. If you do have lupus, you will definitely need to learn and be attentive to your body's signals. You might not have any major problems, but serious things can crop up very quickly and you are going to need to know what to do. I personally haven't had any emergencies. Hope I don't ever. Read all you can about this.
Hi ! Do you think it is lupus ? I didn't mention lupus because the poster doesn't have any inflammation, rashes or swelling. But then on the other hand... sometimes it takes awhile before lab results are positive. (we both know that one!) Like you, I can also relate to Sami's symptoms .. because her symptoms could certainly fall into the lyme, fibromyalgia and CFS category. 29.3% of fibromyalgia patients have a high ANA titer and it is usually a low titer.
The treatment I'm on is based off of Dr. Nicolson's (and others) research. This treatment is covering all of these Th1 inflammatory diseases.. autoimmune & syndromes. Some of this research was recently presented at the 2008 International Congress on Autoimmunity.. held in Portugal.
I have Sjogren's Syndrome and can relate to some of the symptoms listed. The problem with all of these "syndromes" and "autoimmune diseases" is that we all share the same symptoms. I know my daughter has fibro and I think she is sicker than I am, although my ANA titer is over 5,000 and her ANA titer is 1:180. She has muscle weakness, cognitive problems, insomnia and widespread pain.
One consideration is getting tested for lyme disease. Unfortunately lymers also have many autoimmune symptoms.
I will keep you, Sami, in my thoughts and prayers. And as they said, "do your research!" There is so much information, including new information out there on autoimmune problems.
i actually love learning, what i hated was being forced to, or having to do things by a certain time. i also love reading which i do a lot of, and im always looking things up that i dont understand. i dont really have a sore throat ora burning sensation. i had a really sore throat the first 3 or so weeks i had it, but then that went away and my cough didnt. my coughing is the worst when i first wake up and get something to eat or drink, ill end up coughing for like 30 mins or so. its also really bad around strong smells (smoke, food, candles, hairspray, ect.). like, for instance, my mom used hairspray this morning and i coughed for like 10/15 mins straight before i just went outside (it was soo cold this morning).
im actually pretty lucky as i dont really get pimples, never really did, but i do have this rash on my upper arms, thighs, back and parts of my chest and stomach. theyre not painful but they do itch a lot. there little bumps, some are red and some you csnt see but can feel. at first they thought it was allergies so we changed the soaps and stuff and it went away for awhile but is now coming back. i also have eczema really bad in my hands and its been going on since i was a baby. it breaks out a lot and if i go too long without using lotion they will crack and bleed. it took me awhile to find a kind of soap that wouldnt make them worse but i finally did a few years ago.
i do have a question though, can you have lupus and the inflammation just doesnt show up until later? because thats the only reason i wasnt diagnosed with that.
the same for lyme because although they havent thought about it its another inflammation thing.
i wish you all well and thank you for the support, and information.
Hi, first thing I noticed was about your cold extremities and purplish discoloration. That's a symptom of Raynaud's.
There is more than one test for Lupus, although they might not have been run since your ANA wasn't interpreted as being high. I'm in grad school to be a NP and we were just taught that "if the ANA is consistently low.. then it can't be lupus" I intuitively disagree, simply because of the number of people who wait years to receive the lupus diagnosis and had symptoms without a high ANA.
The anemia is macrocytic. What would be important to know is if it is megaloblastic. Megaloblasts can be seen under microscope, but the MD would need to order a peripheral blood smear and could possibly refer to a hematologist. Your B12 and folate levels should be checked, or you could start by supplementing yourself because if the symptoms improve, that's almost diagnostic.
Another thing they sometimes don't tell you about Lupus is that the symptoms don't always all show up at once. My ANA was 1:364 when I was first tested and now it is 1:1260. After three years I am just now developing the swollen joints and muscles and the bi-lateral joint pain in wrists, hands, elbows, ankles and knees. I had the hip pain off and on for a while. I have a diagnosis of Undifferentiated Connective Tissue Disease right now which, from what I understand, is a kind of catch-all diagnosis until you get enough symptoms to definitively diagnose with a specific disease. If they don't want to run the tests you need, get another doctor.
I agree with oncnurse. I actually thought of Raynards, but there is another disease and I couldn't think of the name at the time and I was waiting until it hit me. My brain-fogged memory finally remembered it. It is called, "Cold Agglutinin Disease" and it is very rare. Why I thought of this illness was because of your Raynard's symptoms, but also your blood cells being abnormal. People with this autoimmune condition have slowing of blood flow with occlusion of superficial blood vessels by agglutinated RBCs and that can cause Raynard's symptoms, chronic fatigue, weight loss, respiratory infections (due to M pneumoniae infection) and other symptoms.
I'm glad that you are still posting. We all are trying to help and are concerned about you. All of us here, I believe, have our own health issues and so you have a wealth of personal experts at your disposal. ; ^ )
raynauds does sound promising, another thing i noticed with it is that when my feet are that purply color if i push on my toes it will turn white for like 30 seconds, odd. i have not been tested for lupus as they threw it out when i had no inflammation or a higher ANA. i do not have a B12 or folic deficiency. and i have been on steroid meds, though i dont remember what type, and did not notice any change.
i am working on getting a new doc. does anybody know of a good internist around san antonio, texas?
raynauds sounds more like what it is, though i do thank you for the websites you always give me as they help.
it means so much too me that yall are willing to help me as i was totally lost as where to go before and now i have so much info that i can give the docs and tell them what i want done or what i belive it is. i dont think id be getting as far without it. thanks
I printed your first letter out so as not to give you wrong advice. Your ANA is low, but so was mine at first. I know now that lupus can be a progressive disease. Meaning symptoms get worse as the disease progresses. My first ANA was 160, then 640, then negative. The lab people were rejoicing. I might have but I was still feeling pretty bad. Then I read someone say to spend time in the sun before your lab is done. That's when the ANA went up to 2,560. I nearly fell out. I didn't really have the full blown butterfly rash until just recently. I was very sick for over a year before a joint begin to swell. It was so mild I'm not sure I would've noticed it, but it had turned a little red. Normally the joints don't swell as bad as they do in Rheumatoid Arthritis.
Reveiwing your case and looking at CFID and lymes symptoms. You do have symptoms that could match Fibromyalgia, CFID, RMSF and or lymes.
fever, headache, chills, myalgia (muscle pain), fatigue, nausea, vomiting, rash, cough, lymphadenopathy (pertaining to the lymph system?), arthralgia (neralgic pain in a joint), stiff neck, erythema migrans (?), leukopenia (low WBC), thrombocytopenia (low platelet ?),elevated AST, elevated ALT & anemia
Rocky Mountain Spotted Fever is another possibliity:
all of the above except no stiff neck, noerthema migrans, and no leukopenia.
(I ended up testing possitive to RMSF) I was a very sick puppy last year. Fibro, lupus and RMSF
fatigue, headache, short-term memory loss, muscle pain, difficulty condentrating, joint pain, depression, abdominal pain, lympoh node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scrathiness in eyes, blurring of vision, double vision, sensitivity to bright lights, munbness or tingling in extremities, fainting spells, light headedness, dissiness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitaions, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities or eyelids, burning on urination & hair loss.
reported to follow a # of infections like Epstein Barr, Mono, hep C, lyme, etc.
muscle pain, morning stiffness, insomnia, musculoskeletal pain, joint pain w/o swelling, fatigue, tingling, pricking or numbness, skin tenderness, light headedness (dizziness), fluid retention, stress or anxiety, poor memory, vocabulary problems, tender points, irritable bowel, chronic headaches, jaw pain, painful menstration, restless leg syndrome
Reported to follow a disturbance in REM sleep.
Print this out and just highlight all of your symptoms and see which one has the majority of your symptoms. You could even take this list to the dr. and ask him if this is an accurate list. Most Drs. do want to help. Some cases are just really tough.
We all care about you and want to see you get well or at least get some help.
Praying for you, Kara
Good post, Kara. What is really confusing to most of these physicians is that many people who have autoimmune diseases and/or "syndromes", have overlapping symptoms. I'm not sure if the medical folks have their textbooks wrong or what.... but it isn't too uncommon for those of us to have more than one diagnosis. I think I mentioned my very high ANA titer... despite the fact that they cannot diagnose me with an autoimmune disease (other than CFS) at this time. Actually... I gave up on rheumatologists because they did extensive testing (I saw one of the best in the country), including taking X-Rays of my hands, wrists, feet and ankles. I figure the treatment that I am currently on has been helping not only CFS patients, but fibromyalgia, sarcoidosis, RA, Sjogren's, Raynards, lyme, lupus and many other autoimmune diseases. It is a new approach to treating these illnesses.... it is treating the infections that are making us so gravely ill.
One of the sites you sent Sami said that they believe autoimmune diseases are caused by an allergy. Perhaps food or chemical. That is interesting to me. I was tested for allergies as a child. I was allergic to corn, green beens, tuna and many other things. I never quit eating these things. Later in life I quit having problems with allergies. But now this has popped up. I wonder how many other people have allergies that also have an autoimmune disorder. I know one lady with Hashimoto Thyroiditis and another with lupus, both had celiac disease.
Which link ? You know many people with CFIDS have numerous allergies, including chemical sensitivites and food allergies (or intolerances). What some believe believe happens is first... immune dysfunction and then autoimmune problems.
Also... people who have Sjogren's Syndrome, austim and CFS seem to do better on a gluten free diet. Not everyone... but the majority I would say.
I've been reading your posts and others about lupus symptoms, and I see a lot of references refering to ANA as a "titer" with a 1:xxx ratio. My ANA wasn't given to me in that format. I was told it (and the Sjogrens) were 234 AU/mL, and that it should be between 100-120 so it was high. How does the AU/mL reading fit into the ratio or does it even?
Your ANA should be a qualitative result (positive or negative). At least this is usually the case, unless things have changed. If your titer is positive.... it will read like this 1:320 and there will be a pattern associated with it.
ANA ==== 1:320 (speckled pattern)
The pattern can help your physician clue in as to which autoimmune disease you have. A speckled pattern is usually seen in people who have lupus, Sjogren's Syndrome, rheumatoid arthritis and other conditions.
Your lab may have used another method of testing, because I've never heard of an ANA titer as 1:234.
darn i just wrote this whole message and my computer freezes, stupid computer.
i will still ask about that disease as it may be what i have and i will take what i can get. i dont believe i have lyme or rocky mountain as i dont have fevers, nausea, vomiting, or erythema migrans, im not sure about the elevated ALT and AST though.
wow, CFID sounds a lot like some of what im experiencing. the only symptoms i dont have are depression, sore throat, diarrhea, bloating, panic attacks, fainting spells (yet), fevers (i dont know the last time i was sick or had a fever, my temp. is normally around 97.5), ive lost weight not gained, or the burning, some hair loss but im not sure its that significant. i also dont get a lot of infections though i had an eye infection 7-8 months ago. i couldnt where contacts and my vision was blurred, and doubled sometimes. its better now and i can wear contacts again but my eyelid is still swollen and my eyes are always dry.
as for fibro, i dont know it may be what i have but the way the doc mmade it sound was as a last resort. if that is what i have then i need proof. he hardly did any tests on me, and threw out some of my symptoms as nothing important. he also said i was depressed and recommended i see a psychologist, and he wont do anything else until i do. i am now looking for a new doc.i know i am not depressed and my mom even told him im not. he still thought i must be though mainly because im 17 and have never had a boytfriend (not that i wanted one), dont have a lot of friends, and dont talk a lot. ive never seen the need to have a ton of friends, i always figured a few close friends was enough for me, im also shy and dont like talking to those i dont know well such as my mom and friends. he also thinks that i should be after what ive been through. anyway if they can prove thats what i have or rule out everything else then fine, but i dont want them to not run tests and say i have it.
as for allergies, i have been tested numerous times for what i might be allergic to and its still not conclusive. my allergies have calmed down a lot as i used to go through 3+ boxes of tissues a week.
i am so sorry for what all have and are still suffering from. i know im not the worst out there and actually far from it but i thank you for taking the time to help me, and i hopeyou all are well.
I tested possitive for Rocky Mountain, but technically did not run a fever with it. I normally run a very low temp, but I ran a 99.5 for months until I began to take an herb called Cats Claw. My pcp also gave me antibiotic for a month. He wasn't sure if the RMSF was not a false possitvie because of the lupus he suspected. The Rhematologist said it was not a false positive.
Maybe PlateletGal can comment on whether fever always accompanies CFD.
Chryssa, have they tested you for the dry eyes? This goes along with Sjogren's syndrome
In case it might help, here are the 11 criteria for lupus (4 are needed for a dx):
1. malar rash (butterfly pattern)
2. discoid rash (raised patches)
3. photosensitivity (reacts to sun exposure, ex. joints hurt, skin rash i.e. FLARE)
4. oral/nose ulcers
5. arthritis (pain sometime w/ swelling)
6. inflammation of the lining of the lung or heart
7. renal disorder (protein or cast in urine)
8. neurologic disorder (seizures and or psychosis)
9. hematologic (low: RBC, WBC, lymphocytes or platelets)
10. positive ANA
11. positive anti DNA, anti-SM, antiphospholipid, or false positive syphilis test
Did the dr. test the 18 pressure points common in fibromyalgia?
Just know that if a dr. wants to try prednisone, fibromyalgia does not respond to prednisone therapy, but autoimmune diseases do.
www.myalgia.com/lupus.htm "Do I have lupus or fibromyalgia"
PlateletGal: The article I referred to about the allergies was:
The symptoms of Cold Agglutinin Disease may include:
fatigue, anemia (caused by low levels of circulating red blood cells), jaundice, sweating and fingers and/or toes (can affect the ankles and wrists) turning uneven bluish or reddish.
This is different than Raynauds in that Raynauds is caused by vasospasm. A triphasic color change occurs from white to blue to red based. (sometimes mine just turn white. It may go through all these colors, I'm usually trying to get them warmed up and are not constantly looking at them)
CAD can accompany mononucleosis, HIV, Cytomegalovirus and the flu.
This is a complex disease and I personally don't know anyone who has/had it.
Do you think the test you are referring to is maybe the anti-SM, anti-RNP, anti-SSA, anti-SSB, SCL 70 antibody, JO1 antibody or centromere B antibody? They have a normal range of 1-120.
ENA also has a normal range of 120 positive and
My name is Summer and I'm 21 years old. I know how you feel... I dont say that lightly, because I used to think no one knew how I felt, but this sounds exactly like my situation. My problems started when I was 19. In and out of doctors offices was my live for about a year. I too had an elevated ANA. After countless monthes of dealing with needles, catscan's, and MRI's, I was ready to give up. But about 3 months ago my mother was watching a program on Lyme Disease. She suggested that I be tested because it mimics several other diseases. So, I told my doctor to run the test and sure enought that's what I had. I strongly recommend that you have the test done. My first test came back negative, but most states recommend a second test and if they dont ASK FOR ONE! Thats how they caught mine. Caution: False positives can accure and there are not very many Family doctors that know much about the disease. Not to mention its hard to catch in certain areas of the country, and first round antibiotics dont always work. I am seeking second round treatment at this time. Please have the test done, because if it is Lyme Disease it can be dangerous to your body long term. I wish you the very best of luck, I know its frustrating.
Look up Leaky Gut Syndrome and Systemic Candida Overgrowth. I have the same symptoms as you and after 39 physicians and 17 speacialists and no diagnosis, other than Fibromyalgia, I have found relief with improvement from treating myself for these 2 diseases. Candex, Caprylic Acid and Coconut Oil. You most likely have an autoimmune disorder that is causing all your symptoms. My symptoms started in 2003 and progressively got worse. I also take MMS daily. (Miracle Mineral Solution) Do your research on these two diseases on Google. You will be amazed at the connection to all your physical ailments.
Sorry hearing what you suffer for a long time. I agree w/ kjackson888, the Leaky Gut Syndrome and Systemic Candida Overgrowth would cause many symptoms like that and currently MDoctors do not have a clear diagnose documents to identify this disease. Many many autism children who got this never get cured because their parents take them to MD doctors. You might want to see NDoctors (Naturopathic Doctor) to have an official diagnose/examine...
Just curious why they dont think you have Lupus? You have many symptoms. Also they may not all be related. I have some of the same and at first they thought I had MS but through a MRI of my head and neck they found it is infact Spinal Stenosis of C3 & C4 with myelopathy....apparently its as a result of a really bad whiplash during a car accident. I also have a positive ANA titre of 1:160...havent got anything else checked as this lab was taken in 2005 I was told it was negative and since the hospital only recently posted labs online I randomly found it. I was 24 at the time. Unfortunately my dear you are young and most docs wont take your pains seriously. Be persistent. Be an advocate for yourself. Insist they look further and give you answers. I pray you find out something because at least then you'll know what to call it! Go to a different MD if you feel they arent taking you seriously or doing enough. make a list of whats going on with you and do some research. Your cardiac issues may infact be nothing. I too feel a seriously bounding heart beat and its just a strong beat. Also you should get your medical records...as you can see from what I posted earlier in the message apparently MD's dont always tell you the truth about your results. Good luck!
I have had all of these symptoms over the years, and have been to more doctors than I can count, so much so that everyone started to think I was a hypochondriac. Unfortunately, all of my tests would come back negative for specific diseases... and my ana titer too low to be considered a true "positive." I went through 8 years of torture. Physically as well as mentally, since everyone thought it was "all in my head.' I couldnt understand how everyone could overlook the real symptoms and problems I was having, the chronic illnesses, (skin/staph infections, narcolepsy, rashes, allergies to everything, chronic cough and throat clearing, "tics" from muscle weakness, chronic fevers, night sweats, chronic pain, joint swelling, especially in the fingers, and even meningitis). I should mention that I am adopted and have absolutely NO medical history, so sadly, that made things a lot harder for me, and much easier for most doctors to say I was nuts or depressed. Until recently... I started to get rashes that were soooo bad everyone noticed, and the tourette's like tics, are actually myoclonus. Not to mention the chronic throat clearing/dry cough. My narcolepsy doc noticed while I was in for a med check... he did some blood work, and another ana titer... and I finally got a diagnosis. Now granted, this is not a very common disease, but I feel it is worth mentioning on this thread, as some of you seem to have a lot of symptoms of multiple auto immune disorders. I am an RN by profession and had never even heard of this! So, I think its important to tell my story... It is called Multiple Connective Tissue Disease (MCTD) but has also been called Sharp's Disease in the past. Basically, it is an autoimmune disorder that has symptoms/components of multiple other disorders, like Lupus, sjogrens.... and many many more. I was thought to have lupus, then sjogrens, MS, ALS, Lyme's and even Huntington's disease (which coincidentally runs in my adoptive families history)... Just a thought to those of you with no diagnosis/multiple negative tests.
Thanks for sharing this Kayleigh. It amazes me how complicated some of this stuff is. It helps us understand why drs. have such a hard time coming up with a diagnosis. And to make things worse, a good percentage of Americans are now addicted to pain pills and other drugs that drs. just instantly think they are drug seekers or just wanting attention. It's a hard time to have problems.
Hello and thank you for sharing your story. It is people like you that take the time to share that helps make the world a better place. I am curious as to what happened with your tics. Also, if you don't mind sharing how you are doing and if any form of treatment has helped.
It has been 3 years since your post, but I'm holding out hope to hear from you.
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