Discussions By Condition: I cannot get a diagnosis.

Un Diagnosed Auto Immune Disease

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: R.Mowie
  • November 9, 2012
  • 00:56 PM

Hello, I am a 19 year old female. Ever since I was 17 I started to develop Sinus infections. These sinus infections seemed to clear up with antibiotics but i always had sinus pressure, ear pressure and blocked ears, severe migraines and dry eyes as well as fatigue that never went away. I was hospitalised on numerous occasions when i was 17 with no abnormal test results this appeared to be my first "flare" of whatever I have. I seemed to just deal with it everyday waking up not feeling well and got used to it as being my norm. Symptoms changed from day to day some days was the pressure sometimes blocked ears or severe headaches. This year which is 2 years later and I am now 19 one morning i woke up with numb feet pins and needles in my legs and soon over a period of a week developed into persistant nerve pain over my entire body. Hands, feet arm, legs, face, torso was just everywhere!

This pain never went away and soon developed joint pain and stiffness in my hands. I was admitted into hospital for weeks I lost 10kg in weight, lost my apetite completely was throwing up quite reguarly and passing out. I also experience dizziness every time i stand up and have a loss of balance. This has been now going on for the last 6 months and I am still un diagnosed. I have been in non stop pain with no answers. I had an ANA test which came back with a positive reading of 2560 which was quite alarming to the doctors. Lupus, Fibromyalgia, MS, Rhyumatoid Arthritis, and Thyroid auto immune diseases have all been ruled out. All forms of bacterial and viral infections that can cause nerve pain have also been ruled out. I have finally started taking a course of steroids prednisone which was prescribed by my GP however it isn't working.

If anyone has any idea what on earth this thing could be would be great to hear what people think so i can get to the bottom of this!
Thank-you :)

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4 Replies:

  • Have you been tested for Sjogren's Syndrome? It is not well know and misdiagnosed very often as fatigue or fibromialgia......It is neither and the symptoms do change on you sometime on a daily or even hourly basis. My main symptoms are dry eyes and mouth, difficulty swollowing, raidating pain in extremities, tooth decay, skin issues, arthrisis like pain in the joints, (Mine are mainly in my hands, elbows, hips, knees and feet.) I do have speratic migrains and several other smaller symptoms. I was diagnosed three years ago and realized I have had symptoms for years and been misdiagnosed. It is done with a simple blood test. Treatment was with steroids and Methotrexate as well as Plaqunill. I have found stress and cold temputers as well as overexrertion, will cause a flair up. If my stress levels are low so are my symptoms. I am currently off all meds but follow up regularly and exercise does help. Good luck.
    kdjouglard 2 Replies
    • November 20, 2012
    • 02:33 PM
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  • Hey, Thanks for your advise! And they haven't actually tested me for Sjogrens as of yet so I will be sure to get that done ASAP! The only diagnosis my Rhumatologist wants to give me at this stage is 'undifferentiated connective tissue disease' I have had an extreamly dry nose andry eyes for quite some time now and occasionally have difficulty swallowing food. I got test results back for my normal blood work and that was all fine they tested me for lupus again and that was all negetive and tested me for an ion overload In my body and that was negetive too. Did you have have pain in your stomach/that was also nerve like? I experience it quite often and they have decided to do a full bone scan and CT scan of all my interal organs and lymph nodes to rule anything out. I also had an MRI just done on my spinal cord and that was all clear of anything which is good news! Just hanging in there now they have increased my steroids up to 40mg a day to see if that helps but they haven't mentioned anything about the other two drugs you mentioned, What are they? And have they helped you? Thanks so much for chatting good to know I'm not alone! :)
    R.Mowie 1 Replies
    • November 21, 2012
    • 11:48 PM
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  • What you describe is exactly what happened to me for years until I was tested and diagnosed with Primary Sjogren's Syndrome. Hope you find out soon and can get some relief. I have had the disease for about 20 years; six of which I was misdiagnosed with Fibromyalgia. I also got a mis diagnosis of Epstien Barr Syndrome. Since my immune system is very abnormal I would probably have a positive titer to just about anything. LolBeBe
    Grandmom 25 Replies
    • November 30, 2012
    • 04:29 PM
    • 0
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  • Hey, Thanks for your advise! And they haven't actually tested me for Sjogrens as of yet so I will be sure to get that done ASAP! The only diagnosis my Rhumatologist wants to give me at this stage is 'undifferentiated connective tissue disease' I have had an extreamly dry nose andry eyes for quite some time now and occasionally have difficulty swallowing food. I got test results back for my normal blood work and that was all fine they tested me for lupus again and that was all negetive and tested me for an ion overload In my body and that was negetive too. Did you have have pain in your stomach/that was also nerve like? I experience it quite often and they have decided to do a full bone scan and CT scan of all my interal organs and lymph nodes to rule anything out. I also had an MRI just done on my spinal cord and that was all clear of anything which is good news! Just hanging in there now they have increased my steroids up to 40mg a day to see if that helps but they haven't mentioned anything about the other two drugs you mentioned, What are they? And have they helped you? Thanks so much for chatting good to know I'm not alone! :) I am neg for Lupus also but positive for Sjogren's.(They are closely related) Sjogren's can cause many strange symptoms and everyone can have different symptoms and triggers. Mine seems to be stress of any kind. (life stressors, illness, cold temps, High Humidity, the list goes on) I also was told I had a connective tissue disease and all my Basic blood work is fine except for Vit D was way off at first, ok now I take 2000 units per day. (Helps with acne too, which flairs up when the Sjogrens flairs up....At 47years old ..Acne) I do have Irritable Bowl another issue they attribute to Sjogrens, I have had a bone Density Scan and it was great, x-rays of all of my joints, Normal Arthritis for my age, I also had a nerve induction test because of all off the pain,(Rule out neuropathy) it was good too. The only thing that got it under control for me was the Methotrexate, (Helps boost the steroids) Prednisolone (We started high and went down on the dosage) and Plaqunill (Spelling my be off ...It is a anti malaria drug for inflammation)...I also found a way to reduce the stress in my life and started a mild exercise program. All of it together has helped....I went off my meds for one year with no pain, then things got crazy around here and with the stress came the pain, sooo I'm back on my meds and hoping for the best. It can be controled is is just very hard. Keep you hopes up and if you are not happy with this Dr call another one I went through three before I found the one I like and that will actually help me. Good Luck. I'll check back periodically.
    kdjouglard 2 Replies
    • December 27, 2012
    • 02:27 PM
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