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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

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Still #searchingforanswers

I've not been on here in forever, i just got to where i withdrew from everyone, ive been searching for so long for a label to give myself, maybe there isn't one. I've heard for so long the only if you were statements from people, i think to myself, ok, but it was fine last week when it benefitted you? I doing know if I'll ever find ansers to what feels like a non ending of searching and questioning, im sure im not the only one that feels this way, just remember your#NeverAlone .

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Any recommendations for affordable online therapy?

Looking for affordable online therapy. My problems are becoming too much right now. #Therapist #GettingHelp #searchingforanswers


Really struggling with the gray area today.

I've managed fairly well since I got the news about the possible diagnosis last Thursday at my recent appointment, but today, mentally it's just too much. I'm angry that in four months we can't find a rheumatologist that can see me and that the most recent one never picks up the phone or returns my calls. I'm frustrated that my symptoms had to get this bad before anything was done. I'm worried about what having a rare autoimmune disease could possibly mean for me and my family. I'm tired of having to explain that I don't know why I'm having more worse days than good and seeing the looks of people who don't believe it. I'm scared about what's to come and if I can handle it.
I'm just at that point where I just want to know what's going on so we can move forward, even if it's just a little bit. I just want to know.

#Undiagnosed #possiblyrare #grayarea #ChronicPain #CFS #autoimmune #CheckInWithMe #parentingishard #Fibro #Arthritis #Anxiety #searchingforanswers