Undiagnosed and rare conditions
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Tired of being sick and tired

Hi my name is Jenn. I have been feeling very ill for almost a year now. I am starting to feel hopeless as my GP says my blood tests seem ok. However when I was in urgent care this past weekend the doctor there looked at the same blood tests and diagnosed me with a uti, possible kidney stones because I saw orange "chunks" in my urine that morning and there was also blood in my urine. He also said I have an internal bleed (high occult blood) and told me I need a CT. When I followed up with my GP today she hesitantly put in an order for an ultrasound and said she believes he misdiagnosed me. Last summer my thyroid test was abnormal, but when it was tested again 6 months later it was normal. This past weekend my thyroid felt swollen to the point where I was struggling to breathe, but because it was tested 6 months ago and it was normal again they will not retest it.  I have had diarrhea for 8 months and I have horrible abdominal most days, I am losing hair, I am extremely agitated, I have unexplained bruises all over my body that just don't look like normal bruises. I have drenching night sweats, bone pain, joint pain, muscle pain, headaches and EXTREME fatigue. Overall I have a very healthy diet because of all of this and I eat frequently, but I am losing alot of weight. In the last 2 weeks I have lost 12 pounds and overall in the last year I have lost 50 lbs. My periods are heavy and when my cycle comes everything seems to flare up even more. I have debilitating pain in my spine daily. The bones in my feet are starting to deform. My nerves seem to be affected as well... I had to have bilateral carpal tunnel surgery recently and now my ulnar nerve is compressed as well as some nerves along my spine. Somedays my vision is blurry, my eyes hurt and they are red and bulging.  I frequently have some sores in my mouth and nose. Often times these symptoms worsen for periods of time so I call them flare ups but I have been tested for auto immune diseases like lupus and rheumatoid arthritis and the tests are negative. The list of symptoms go on even further. I can barely function and I am a mother of two, so not functioning is not an option. My family and friends don't understand because my doctor can't diagnose me. I am starting to feel so alone as I can literally feel my body falling apart but I have no answers as to why.  Has anyone experienced symptoms like these?

Replies

  • janer1967janer1967 Community champion Posts: 7,286 Disability Gamechanger
    Hi and welcome to the community, I am sorry to hear how you are struggling it must be draining dealing with all that and bringing up your family.

    Obviously we are unable to give medical advice but some members may be able to share their experience of other symptoms.
    I suggest you try your GP again or try and get a second opinion, or change GP

    I hope somebody can throw some light at this for you
  • OxonladyOxonlady Member Posts: 291 Pioneering
    Hi JennS1986. I'm really sorry to hear about all your health problems. It also concerns me that you don't appear to have emotional or psychological support to help you cope with the physical problems. You might like to talk to the Samaritans or CALM (Campaign Against Living Miserably).

    You need to talk to your GP again. As far as I know, symptoms such as unintentional weight loss, night sweats, extreme fatigue, unexplained bruising and bone pain all warrant further investigations. I'm assuming that your GP has done the following blood tests : Full blood count, urea and electrolytes, liver function, bone profile, Thyroid function, ESR and CRP. If you have not had blood tests recently, please request these. Then ask if any of these results are abnormal. If your GP refuses, then consider changing you GP. You may also need a referral to a specialist, either an endocrinologist or a rheumatologist.
    Wishing you all the best, I hope this helps a little. Take care. 
  • JennS1986JennS1986 Member Posts: 3 Listener
    Thank you! It's nice to be able to share my concerns in this community. Just talking about it helps!
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,941 Scope community team
    Hi @JennS1986 and a warm welcome to our community.

    It sounds like you've had a horrendous year. While I can't promise you'll come across anyone here with those symptoms, we'll do our best to support you. You're more than welcome to talk and share, especially if it helps! Please stay in touch. :smile:
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  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi jenn, well there is certainly something going on which should be investigated further!

    Doesn't sound like you are being well looked after by your GP.......take it further.


  • JennS1986JennS1986 Member Posts: 3 Listener
    Thank you everyone for your support. I just wanted to follow up on my original post now that (after almost a year of misery) I finally have some answers. I was actually getting to the point where I was starting to believe my GP and my therapist that it was all in my head! A few weeks ago I wound up at urgent care for heart plaipitations and a low grade fever. The doctor here actually sat down and listened to me! No one had really done this yet. She ran some tests and referred me to an endocrinologist where we have figured out I have hyperthyroidism and a large pituitary tumor at the base of my brain. We are working on a promising plan for treatment and I am hopeful. If you folks ever have a provider who makes you feel like your symptoms are nothing or that you are over reacting, don't give up. We know our own body better than anyone else and we know when something is wrong. Trust your instincts! 
  • Ross_ScopeRoss_Scope Community Team Posts: 2,400 Disability Gamechanger
    Hello @JennS1986

    Thank you so much for providing an update and I'm thrilled to hear that you're finally getting somewhere! :) 

    It's great that you finally found a doctor who took the time to listen to you, that's why we often advise people to ask to be referred to a different GP or other health professional, because a fresh pair of eyes and ears can bring better outcomes. 

    Best of luck with the treatment plan and please keep in touch, this community is always here for you :) 
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Thank you for taking the time to update us @JennS1986. As @Ross_Scope said, take care and we're here if you need anything. :)
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  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,941 Scope community team
    I'm so glad you finally got some answers @JennS1986! Best of luck with the treatment.
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