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Need help with results & diagnosis!!?

Posted , 5 users are following.

sarah55591
sarah55591

Hi Guys,

I'm extremely confused & feel very alone, for the longest time I have been unwell.

When I was younger I was admitted to the hospital on several occasions due to persistent fatigue, nausea & an unexplained fever. Nobody could explain why I was unwell I was just prescribed medication and I eventually learnt to deal with it. A few years down the track I developed an eating disorder which I luckily recovered from but unfortunately since then I have been on a downwards spiral in terms of my health. I feel as though the symptoms I experienced when I was younger have come back with a vengeance and I am slowly going down hill. I'm 20 years old, extremely confused & unsure where to turn. 12 months ago I was diagnosed with endometriosis, I have had two surgeries in the last 9 months & I am still at square one.

The surgeries have helped with the period pain ect but my symptoms have been getting worse:

- Sever mouth ulcers

- Extreme fatigue

- Muscle and joint pain

- Heart burn

- Cold Fingers & Hands

- Daily Headaches

- Brain Fog

- Thinning Hair & Hair Loss

- Insomnia & Night Sweats

- Rash Around My Nose

I have been to the doctors over and over but unfortunately they are just saying its endometriosis & putting me on more and more medication. I have since taken myself off my medication thinking that maybe it was making me feel worse, but that hasn't helped. I honestly feel like I'm going around in circles. I saw a specialist who was sure I had some form of autoimmune disorder but when I had all the bloods don't they returned negative. I am 110% sure I have an underlying condition that has been progressively getting worse over the years but unfortunately I have not been able to find a doctor who is willing to help me. I have listed any abnormal blood results below and I would really just appreciate anybody's opinion on where to go or what to do. Because I feel as though I can't live the rest of my life like this:

CD56 NK Cell - 0.65 (normal range 0.05 - 0.64)

S DHEAS - 3.5 (normal range 4.5 - 11.7)

S T-BIL - 17 (normal range 21-105)

TSH - 2.18

ESR - 1 (normal range 3-12)

B12 - 200 (normal range 200-700)

Vitamin D - 35 (normal range 50-250)

I am on both vitamin D supplements & I have a B12 injection every 3 months.

0 likes, 6 replies

6 Replies

  • margaret22116
    margaret22116 sarah55591

    Posted

    Hi sounds like the story of my life! Think it possible you have something like me. I have Behcet's bùt there are also things it could be like Lupus or Sjogren's.

    Very hard to he diagnosed with these disorders unless they are looking for them. Often no conclusive blood tests.

    You need them to check inflammatory markers and ana.

    You mention ulceration in your mouth. Do you get it elsewhere? Genital area? Even mildly? Forgive me for asking but that would flag up Behcet's.

    You need to see a different sort of specialist like a rheumatologist or an immunologist. Sounds like you are in the United States? If so please look up the American Vasculitis Foundation and contact them on what to do now to get a proper diagnosis.

    I know how you feel as I went to different specialists who diagnosed endometreosis IBS you name it. But I finally got properly diagnosed 12 years ago. On treatment now and free of symptoms. X

    • sarah55591
      sarah55591 margaret22116

      Posted

      Hi Margaret,

      Thankyou so much for your reply!

      I had ana tested and it was negative, and I believe they tested inflammatory markers and there was nothing that screamed autoimmune issue. So they gave up on any lupus diagnoses etc.

      I don't get ulcers anywhere else apart from in my mouth, I have gone to the emergency department twice with a serious case of them.. so bad I couldn't eat for a week. Made me very unwell!

      I also remember a time I broke out in a huge spotty type rash that they said was just something "kids my age get"

      I am seriously lost on where to go, I am afraid if I see another specialist I will just get laughed at like previous times in the past with other doctors.

    • margaret22116
      margaret22116 sarah55591

      Posted

      Ok inflammatory markers are not always positive even if you have auto immune disease.

      Call the vascultis foundation. Explain to them where you are at and get them to advise you where to go. They will know of good specialists in your area.

      These diseases are often diagnosed on history. I know you feel you can't go through any more but you have to get seen by the right sort of specialist. A gynaecologist could not diagnose that type of disorder. X

  • mrsmop
    mrsmop sarah55591

    Posted

    Hi Sarah are you in the US?

    There is another organisation that you could have a look at they supposrt people with Pemphigus & pemphigoid.  The International Pemphigus & Pemphigoid Foundation.  It was the ulcers in your mouth that made me wonder.

    I have Mucous membrane pemphigoid which doctors don't look out for. I also had a rash on my skin & am under a Dermatologist & Oral Specialist & Ophthalmologist.

    It took me a long time to be diagnosed & I was told that blisters that I had on my skin, were insect bites.

    https://www.dermnetnz.org/, you will find a wealth of information.

    Good luck Sarah & don't give up hope, you'll get there eventually.

     

  • JenInCali
    JenInCali sarah55591

    Posted

    Hi Sara... I so understand the feeling of loneliness and isolation. A forum like this is a good place to vent. Reading your list of symptoms some questions come to mind, such as have you been seen by rheumatology? In your blood work have you had your ANA tested? That is a test for lupus and pretty specific for lupus. Any issues with your internal organs.? I would imagine you have researched lupus online and it appears that you have many of the symptoms. I went online and educated myself about autoimmune disease then started doing as much as I could. The good thing about knowledge is that I can hold my own in a conversation with my doc and formulate pertinant questions. Also, I have found these forums to be very helpful and a good way to give and receive information. Take good care, Sarah.

    JENNIFER

    • sarah55591
      sarah55591 JenInCali

      Posted

      Hi Jennifer,

      Thankyou so much for your reply! Yes I had my ANA tested and a whole bunch of other indicators for autoimmune diseases but they all came back negative. From my understanding though, they shouldn't have ruled out an autoimmune issue just based on the blood results.

      I have had a lot of bladder issues, weird stomach aches and pains, gallbladder problems, I've had an mri because due to memory loss, confusion, concentration problems etc. I tend to run a low fever a lot, I will go through stages of night sweats.

      I have an extremely broad range of issues and they do seem to "flare" up and go away. Which I believe is half the reason I have never received a proper diagnosis. It is really nice to know that I am not the only one struggling though this, thankyou so much. I think a next step for me would be to go and see a rheumatologist.

      Thankyou Again, Sarah

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