Testresults

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    My undiagnosed illness symptoms

    Here are my symptoms at the moment:

    Weight gain

    - Previously I was always on the thin end of the spectrum now on the overweight boundary

    - Have been passively been trying to loose weight for 18 months (usually I barely have to try to loose weight)

    - Average exercise 30-60mins/ day

    - I look pregnant

    - None of my clothes fit anymore

    Brain fog

    -Can’t concentrate

    - Poor memory

    - Feels sludgy, no smooth thoughts

    - Almost constant headache

    Frequent illness/ infections

    - Getting ill once a month with a cold/ flu something like that

    - Have developed nasal polyps as a result

    - Recovery slow avg 2-3 weeks which means I’m ill 50-70% of the time

    Absolutely exhausted

    - Could sleep for England Sometimes struggle to get to sleep

    - Can easily sleep well over 12hrs but up to 24hrs at a time

    - Difficult to get up in the morning, everything heavy

    Loss of libido

    - 3-4x per week down to 1x per month

    Nipple discharge

    - Started in January 2022

    - Can be clear, milky or clear with yellow in it

    - Often spontaneous after a shower

    Numbness and tingling in hands and fingers

    - Palm of right hand feels like ice is being rammed into it. Almost feels like the nerve is exposed and cold but it doesnt hurt and there’s not anything I can find that helps

    - Left hand pinky and ring finger often go numb

    - Often comes in waves where it will be almost constant for a few days or weeks then subsides for a bit

    Temperature sensitivities

    - Often too hot or too cold and struggle to get to the right temperature without swinging too far the other way

    Loose, clicking joints

    - My ankles are always giving way and often hurt for days after a particularly bad roll

    - Many joints click when I move and I sound like a 1 man band, in particular my knees

    - The arch of my right foot clicks but I don’t think there’s any joint or anything there to click?

    Skin changes

    - Lots of bruises that I don’t know where they came from

    - Spots particularly on chest also more acne on my face than I had during teenage years

    - Fragile skin that tears if I take a plaster off

    - Purpura and pietache

    - Stretch marks on my sides and thighs

    Bowel changes

    - Swing between constipation and almost loose/ diarrhea

    Hair thinning

    Slow healing of wounds

    Recent additions

    - Longer, heavier periods (14 days and bleeding through onto clothes started 6-9 months ago)

    - Twitchy muscle thing

    - Can feel blood in my legs

    - Intermittently feels like I have a UTI for a few hrs then it goes away

    - Bone in my lower leg hurts (both sides)

    Test results

    - Normal pituitary MRI

    - Nasal polyps found on MRI

    - Normal ovaries (NOT PCOS)

    - mild anemia which worsened with heavier periods

    - Normal WBC even when ill

    - High IgA and IgM with normal IgG and recent EBV infection

    - Negative ANA

    - intermittently elevated liver enzymes, negative liver antibodies

    - Negative HIV

    - TSH mid of normal range, T4 on lower end but normal

    - CRP normal, ESR borderline

    - high Phosphate swings between high and low but usually low and rarely normal

    - Intermittently but usually high estrogen, DHEAS, testosterone, cortisol, LH

    - Low good cholesterol (slightly), all other cholesterols are normal

    - Normal vit D, platelets, urea, electrolytes, albium, calcium, HbA1C, B12

    If anyone has any suggestions of things to look into that'd be really helpful.

    #Undiagnosed #chronic #ChronicIllness #chronicallyill #searchingforanswers #Gaslighting #Answers #Diagnosis #Testresults #symptoms

    2 reactions 1 comment
    Post

    Blood work and imaging

    I got some blood work done. I only have half of the results because half of it had to be sent out to the Mayo Clinic. Also I have two different types of imaging that have to get done and now they are a week apart. I just want to know the whole answer to what is going on so I can stop stressing about what ifs and get a clear plan of care. #Testresults
    #DistractMe

    2 comments
    Post

    Doctor needs me to come in to review test results. Concerned

    I've had NUMEROUS tests performed by numerous types of specialists, but I've never had a physician tell me I need to come in to go over my results.

    I had my 1st appointment with a new Rheumatologist 3 weeks ago; they took A LOT of blood (maybe 15-20 vials).

    They called me 2 weeks ago - stating my Vitamin D level was 26, and they were prescribing a 50,000 IU supplement...and I thought that was that.

    Then, this past Friday, I received another call from them - stating that the doctor needs me to make an appointment for Monday (tomorrow) to go over my test results.

    ....I had thought that, last year, my Neurologist had done a full lab workup for rheumatoid factor, autoimmune disorders, etc. (that's what they led me to believe)...But, after reviewing my medical records & test results, I've realized there were a few blood tests that hadn't been performed....blood tests that this new rheumatologist DID perform.

    I have a family history of Rheumatoid Arthritis and such. I don't know
    what to expect.

    I'd really love to not have Rheumatoid Arthritis (or something else) on top of Fibromyalgia. I'm turning 29 in 2 weeks, but I feel 85.

    #Worried #anxious #Uncertain #scared #Testresults #Rheumatologist #RheumatoidArthritis

    3 comments
    Post

    Doctor needs me to come in to review test results. Concerned

    I've had NUMEROUS tests performed by numerous types of specialists, but I've never had a physician tell me I need to come in to go over my results.

    I had my 1st appointment with a new Rheumatologist 3 weeks ago; they took A LOT of blood (maybe 15-20 vials).

    They called me 2 weeks ago - stating my Vitamin D level was 26, and they were prescribing a 50,000 IU supplement...and I thought that was that.

    Then, this past Friday, I received another call from my rheumatologist's office - stating that I needed to make an appointment for Monday (tomorrow) to go over my test results.

    ....I thought that, last year, my Neurologist had done a full lab workup for rheumatoid factor, autoimmune disorders, etc. (that's what they led me to believe)...But, after reviewing my medical records & test results, I've realized there were a few blood tests that hadn't been performed....blood tests that this new rheumatologist DID perform.

    I have a family history of Rheumatoid Arthritis and such. I don't know what to expect.

    I'd really love to not have Rheumatoid Arthritis (or something else) on top of Fibromyalgia. I'm turning 29 in 2 weeks, but I feel 85.

    #Worried #anxious #Uncertain #scared #Testresults #Rheumatologist #RheumatoidArthritis

    1 comment
    Post

    Another normal result

    I know it may seem odd, but I got another normal medical test result today and if just tore me apart. I have been sick for almost 4 years now, with no diagnosis. I have had countless tests done (many abdominal CT scans, so many ultrasounds, countless labs, brain MRI, hidascans, heart monitors) and they all come back normal. I’m just lucky that I am now with a doctor who doesn’t think it’s “all in my head” like doctors in the past. For most, normal test results are a good thing. For me, it is just another discouragement. #ChronicIllness #Thisisreal #Testresults

    1 comment