Discussions By Condition: I cannot get a diagnosis.

which autoimmune disorder? 4 years and still undiagnosed..

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: tinkerbelle4
  • March 16, 2009
  • 08:41 PM

I am 27 female. My problems started shortly after the birth of my first child (8 years ago).. My hips were very painfull. It took three years to be referred to a rheamatologist as they kept telling me that it was nothing and that I was too young to have any form of arthritis. (my mother was hospitalized when pregnant with me and my twin sister with what was thought to be osteo arthritis) Now she has SLE and RA)My twin also has many problems including: fibromyalga, epilepsy and complex pain syndrome.I have been under my rheumy for 4 years and have been tested for many conditions but still yet to have a formal diagnosis.Here are my symptoms: severe pelvic pain which comes and goes I was told it is synthesis, camptadactly, clinadaytly which I have had since birth but has now got very bad.(My hands are always hurting especially when doing anything repetitive).Tiredness from the moment I wake up yet this does not improve even if I have 12 hours + sleep.My ankles and heels of feet always hurt so much , I can not wear heeled shoes at all without severe pain they always feel as I am walking on glass, heels seem to make this worse. My pain seems to move around my body, one day my foot the next it could be my back.
Severe lower back pains that seem to move up wards within a couple of days to the base of my neck and inbetween my shoulder blades. If I am sitting and turn my back clicks at the bottom. It feels as though my legs are not positioned in my pelvis properly, my right leg seems shorter than the left and my trousers drag on the floor on my right leg but do not my left.
I feel weak like there is not enough power in my arms and legs and as though I have no stamina -even something as minor as changing bed sheets can really take it out of me.I am also quite forgetful and cant seem to work out simple number problems that even my 8 year old son finds very easy. I can easily lose track of my thoughts and also conversations which can be very embarrassing. I also have Lots of spider veins popping up all over my face, chest and arms,but I only drink very, very rarely with major consequences( feeling very ill and weak for days afterwords). I have dark pigmentation patches on my arms and face. The sun makes me feel very weary and also give me hives at times even if I do not go outside. I have very frequent headaches at the top of my head and over my right eye ( when it is severe I can not say the words that I am thinking) and an almost constant sore throat.
My rhemy has tested me for Addison's but the test was negative also my RA is always negative. My vitamin D is low as is my PTH, and my blood pressure is never more than 90/50.
It seems that my symptoms are quite random so don't know if they are all caused by one particular disease or illness. I take LODINE 600mg daily and Plaquenill 200mg twice a day , codeine when needed but the codeine makes my memory much worse so I try not to take it wherever possible, neither seem to do anything for my pain. My pains always get worse when I am resting and in the evenings , if i do too much in the daytime I really pay for it after wards either the same day or the next days after.yet if I do not do much it is very bad also.
If anyone has any indication what this could be I would be very great full as I have 4 young sons to care for and feel that I am wasting my life (and theirs)away as I am in so much pain and struggling to do the normal day to day activities with them. hope that someone who reads this can help.

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11 Replies:

  • I totally empathize with your symptoms. Have you got a bone density scan? I am 23, been sick for 6 years with similiar symptoms plus serious gastro symptoms.It really sounds like LUPUS, have your ANA's checked. Also have your rheum doctor test you for HLAb27 gene, its not a diagnosis but it might get them to check for Ankolysing Spondilytis.There are many arthritis and rhematory factors that people of all ages suffer from. Don't let these doctors play your pain down.Find another one that will listen.
    latejuly 9 Replies Flag this Response
  • I have now had hand/ wrist/ pelvic x rays. An MRI on my back and pelvis and waiting for the results. He mentioned SAPHO ,osteitus (not sure on spellings!) , PSA, Sj's disease, PSA and Sarcoid. He also tested the HLAB27 marker. My next appointment is in June so hopefully we are at last getting somewhere. I am under the NHS unfortunately and can not afford to pay privately I think that this is why I have been under same rheamy for 5 years with no diagnosis- it seems to be going on and on.
    tinkerbelle4 5 Replies Flag this Response
  • I have been given my results from my back MRI, it states that I have hyperlordosis, sacriolitis, 2 level degenerative disc disease and some displaysia of L5. My rheamy did not go into details, he has now refered me to a spinal surgeon. I have been told that I have psoratic arthropathy, is this just a genralised term? I would like to try to claim for DLA as now have a rough idea what is going on with my back, and havent worked for the last 2 years because of the pain/ tiredness but do not know what to write on the forms, would I qualify? please comment if you have any info. x
    tinkerbelle4 5 Replies Flag this Response
  • Wow! Do I sympathize with you. I wish I had a clue as to what you might have. I am experiencing the same kind of situation. About 30 symptoms and no real diagnosis, doctors giving up a little. I finally am consulting with a new Neurologist for a second opinion. We'll see what he comes up with. Can you get a second opinion? Like the previous response said, don't let the doctors play your illness down. You've probably paid them enough to buy a new yacht- the least they could do is give their best at helping you find out what's wrong!
    Anonymous 42789 Replies Flag this Response
  • Wow! Do I sympathize with you. I wish I had a clue as to what you might have. I am experiencing the same kind of situation. About 30 symptoms and no real diagnosis, doctors giving up a little. I finally am consulting with a new Neurologist for a second opinion. We'll see what he comes up with. Can you get a second opinion? Like the previous response said, don't let the doctors play your illness down. You've probably paid them enough to buy a new yacht- the least they could do is give their best at helping you find out what's wrong! My rhemy has given up n me and discharged me from his care, by writting a letter to my GP, he did not even have the decency after 5 years to tell me face to face.I have now been refered to a professer of rhemy who hopefully can diagnose me after 9 years of constant pain and misery. My spinal surgon thinks that my "condition" causes all the pain and my EX rhemy thinks that my spine/ pelvic problems are the cause of the pain and has also discharged me for now! But where the tiredness and other numerous symptoms come from I may never know.I feel like they have given up and dont see why I should be left like this. my pain is very real and is so hard to come to terms with as I do not have a diagnosis. If anyone has a similar story or any ideas please respond.x
    tinkerbelle4 5 Replies
    • September 22, 2009
    • 11:04 AM
    • 0
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  • Tinker,Have you seen a Chiropractor for your pain? I would recommend a Chiropractor that specializes in Sacro Occipital Technique (SOT). They are very thorough and comprehensive. check out www.sorsi.com for one near you. They will look at balancing the pelvis, organ function, nervous system function and more.
    Anonymous 42789 Replies
    • September 23, 2009
    • 03:06 AM
    • 0
    Flag this Response
  • Hi! Really sorry to hear about the suffering you have been experiencing. I only say that because I have an inkling from my own struggles with being undiagnosed for 15+ years and then probably wrongly diagnosed for the last 3 as very few symptoms have been eleviated. Of all of my symptoms, I do not suffer from skeletal pain so my heart goes out to you.After going through many years of research of extensive symptom lists and reading posts like this website provides, your symptoms don't sound completely unrelated or random to me. Although, I do not have arachnoiditis or Chiari malformation, I believe based on what you originally posted you may want to read about them especially the latter. (I am not a medical professional; so, please find a decent one if you can. You have to diagnose yourself today and find a doctor that can confirm or troubleshoot your findings.)I think child birth could constitute a traumatic back or skeletal structure event. The site also mentions that the preservatives in the epidural steroid injections could cause arachnoiditis. As for your sister's complex pain syndrome (I assume this is a generalized term since they can't properly diagnose her either), this could fit.http://www.spineuniverse.com/displayarticle.php/article180.html* There is also a congenital condition called Chiari Malformation that has often been linked with symptoms of Fibromayalga and Chronic Fatigue Syndrome, which may fit both your sister and you. *http://www.spineuniverse.com/article/chiari-malformation-4489.htmlhttp://www.spineuniverse.com/displayarticle.php/article1884.htmlAnything that doesn't fit into one of these conditions assuming you find they are relevant to you, (based on my experience with what seem to be random symptoms) could be a Vitamin B12 and Vitamin D deficiency. These deficiencies could definetly cause low energy levels, struggles with focus, and light sensitivities to start with.I hope any of this even remotely helps. The spine universe site has a lot of good info outside of the ones I thought of.I wish you health and happiness.
    Anonymous 42789 Replies
    • September 23, 2009
    • 01:26 PM
    • 0
    Flag this Response
  • http://www.mold-survivor.com/symptoms.htmlI totally empathize with your symptoms. Have you got a bone density scan? I am 23, been sick for 6 years with similiar symptoms plus serious gastro symptoms.It really sounds like LUPUS, have your ANA's checked. Also have your rheum doctor test you for HLAb27 gene, its not a diagnosis but it might get them to check for Ankolysing Spondilytis.There are many arthritis and rhematory factors that people of all ages suffer from. Don't let these doctors play your pain down.Find another one that will listen.
    Chevy2413 12 Replies
    • September 23, 2009
    • 03:04 PM
    • 0
    Flag this Response
  • you have low vit D which could certainly give all of your symptoms but don't list that you are taking D supplements to correct that. http://www.dailymail.co.uk/health/article-508283/Could-vitamin-D-really-cure-arthritis.htmlI got this book out of the library but it's very cheap on amazon
    Anonymous 42789 Replies
    • September 24, 2009
    • 02:44 PM
    • 0
    Flag this Response
  • All these symptoms sound like lyme disease. You must see a lyme literate doctor. Go to a lyme support group in your area to get referred. Regular doctors don't treat it. You'll be surprised that everyone has the same symptoms you do. Read Burrascano's 2008 guidelines. Or lead a very healthy life style. one hour excercise a day. High fiber, low fat/sugar.
    Anonymous 42789 Replies
    • December 22, 2009
    • 10:58 PM
    • 0
    Flag this Response
  • I am 27 female. My problems started shortly after the birth of my first child (8 years ago).. My hips were very painfull. It took three years to be referred to a rheamatologist as they kept telling me that it was nothing and that I was too young to have any form of arthritis. (my mother was hospitalized when pregnant with me and my twin sister with what was thought to be osteo arthritis) Now she has SLE and RA)My twin also has many problems including: fibromyalga, epilepsy and complex pain syndrome.I have been under my rheumy for 4 years and have been tested for many conditions but still yet to have a formal diagnosis.Here are my symptoms: severe pelvic pain which comes and goes I was told it is synthesis, camptadactly, clinadaytly which I have had since birth but has now got very bad.(My hands are always hurting especially when doing anything repetitive).Tiredness from the moment I wake up yet this does not improve even if I have 12 hours + sleep.My ankles and heels of feet always hurt so much , I can not wear heeled shoes at all without severe pain they always feel as I am walking on glass, heels seem to make this worse. My pain seems to move around my body, one day my foot the next it could be my back.Severe lower back pains that seem to move up wards within a couple of days to the base of my neck and inbetween my shoulder blades. If I am sitting and turn my back clicks at the bottom. It feels as though my legs are not positioned in my pelvis properly, my right leg seems shorter than the left and my trousers drag on the floor on my right leg but do not my left.I feel weak like there is not enough power in my arms and legs and as though I have no stamina -even something as minor as changing bed sheets can really take it out of me.I am also quite forgetful and cant seem to work out simple number problems that even my 8 year old son finds very easy. I can easily lose track of my thoughts and also conversations which can be very embarrassing. I also have Lots of spider veins popping up all over my face, chest and arms,but I only drink very, very rarely with major consequences( feeling very ill and weak for days afterwords). I have dark pigmentation patches on my arms and face. The sun makes me feel very weary and also give me hives at times even if I do not go outside. I have very frequent headaches at the top of my head and over my right eye ( when it is severe I can not say the words that I am thinking) and an almost constant sore throat.My rhemy has tested me for Addison's but the test was negative also my RA is always negative. My vitamin D is low as is my PTH, and my blood pressure is never more than 90/50.It seems that my symptoms are quite random so don't know if they are all caused by one particular disease or illness. I take LODINE 600mg daily and Plaquenill 200mg twice a day , codeine when needed but the codeine makes my memory much worse so I try not to take it wherever possible, neither seem to do anything for my pain. My pains always get worse when I am resting and in the evenings , if i do too much in the daytime I really pay for it after wards either the same day or the next days after.yet if I do not do much it is very bad also. If anyone has any indication what this could be I would be very great full as I have 4 young sons to care for and feel that I am wasting my life (and theirs)away as I am in so much pain and struggling to do the normal day to day activities with them. hope that someone who reads this can help.People here have mentioned that it could be several different autoimmune conditions and I agree. Have you ever been tested for Celiac disease? It is an autoimmune condition caused by the inability to digest gluten which is found in wheat, rye, barley and oats (and some other less-common grains). It can cause all of the symptoms you are mentioning and actually leads to OTHER autoimmune conditions. It causes you to have low Vit D, B12, iron, etc. Your intestines become damaged and you are unable to absorb nutrients. it can cause digestive problems (bloating and gas), headaches, canker sores, rashes/eczema, body aches, thyroid problems... Search online for "celiac symptom list" and you will find tons of research.You should be tested but please know that the testing for this disease isn't perfect. Many things could cause the antibodies not to show up. You need to read about the testing for it and really push your doctors!!! There is genetic testing as well as blood antibody testing! Many doctors are not well-informed about this condition so get some books if you have to. Check Amazon.com for The Gluten Connection-- http://www.amazon.com/Gluten-Connection-Sensitivity-Sabotaging-Health/dp/1594863873/ref=sr_1_1?ie=UTF8&s=books&qid=1272439834&sr=1-1Celiac Disease: A Hidden Epidemic--http://www.amazon.com/Celiac-Disease-Revised-Updated-Epidemic/dp/0061728160/ref=sr_1_6?ie=UTF8&s=books&qid=1272439834&sr=1-6and/orDangerous Grains--http://www.amazon.com/Dangerous-Grains-Gluten-Cereal-Hazardous/dp/1583331298/ref=sr_1_5?ie=UTF8&s=books&qid=1272439834&sr=1-5Please don't give up on this! Even if you don't test positive in the first blood test, you could be gluten intolerant which can have the same symptoms. RH is only one of them.Take care!
    Anonymous 42789 Replies Flag this Response
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