I have been an outpatient at NIH since 2013. I am part of an adult onset autoimmune deficiency program and they still don't know exactly what's going on with me. I have fluid on most of my joints with extreme pain that comes and goes. I have a moderate level of joint, tendon and muscle pain on a regular basis. I have severe onset of flu- like symptoms that will last anywhere from 20 minutes to 5 days. The symptoms come on instantly and with those symptoms I have episodes of difficulty breathing. I am sometimes gasping for air. I get strange bruise-like areas on my arms without explanation. I have a bizarre rash in the back of my throat that won't go away. I could go on and on. I have a positive ANA and a low IGg. According to NIH I definitely have an autoimmune disorder, I just don't fit any true diagnosis. They have been doing genetic and DNA testing and have discovered that I have a scrambled DNA and an abnormal protein. They are still following me but have turned me over to a specialist in autophagy because they have run out of answers. They have ruled out lupus, shorgren's, you name it. I have multiple symptoms that fit multiple conditions but not enough of any one disorder to classify me.
I'm am afraid. What else can I say?
autoimmune and joint/muscle pain ... they go together, but doctors typically cannot track the links. we are on our own.
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.
Thank you.
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.
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.
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!
Hi Chryssa,
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...
Good luck.
Chryssa,
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.
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.
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
PlateletGal: The article I referred to about the allergies was:
www.caringmedical.com/condition_details/cold_agglutinin_disease.htm
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.
Chryssa,
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"
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.
chryssa
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.
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?
Hi karajo,
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.
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.
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.
Best,
PlateletGal
Hi Chryssa,
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.
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
CFID:
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.
Fibromyalgia:
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
Best of luck to you... please keep us posted. You might also want to ask about that rare disease that can give you Raynard's symptoms.
Hugs,
PlateletGal
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 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.
http://emedicine.medscape.com/article/135327-overview
http://www.caringmedical.com/conditions/Cold_Agglutinin_Disease.htm
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. ; ^ )
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.
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.
Were you ever put on any steroid meds?