My present diagnosis is Undifferentiated connective tissue disorder and Im awaiting further tests with a specialist on the 17th July to see if it could be lupus which had been queryed and then found negative a whole ten years ago.
1. ) What do you think may have been your very first clue(s) that something wasn't right?-- My very bad reaction to parvovirus ten years ago- all joints swelled, temp very high, delirious, blood tests showed ANA Positive and increased plasma viscosity due to inflammation. Needed steroids to control the swelling and fight the fatigue etc once the joints began to heal.
a. Overall stiffening, such as in the morning or after sitting awhile? Now (Yes - mostly in legs and feet, sometimes lower back and neck area).Initially with that flare I couldnt move at all- my nack comletely seized - pushed out disc and I just was so swollen and sore.
b. Random pain in muscles/joints (moving around in a variety of places)? Now (Definiely yes - always aching somewhere! and it moves every five or six days. I occasionally get a day in between the next place starting up but its rare!) Everything ached in that initial flare but it did go away - now ten years later it never completely goes but isnt at that intense flare level.
c. Localized pain (pretty much the same place all the time)? Now (Knees always bad to different degrees and thumb joints too. Recently lasy six weeks or so the heel area under foot always aches to diferent degrees though day to day). Initially my neck joints - and I could feel the inflammation jumping from one vertebrea to another - it felt like a red hot poker working its way down your spine.
d. Any muscle spasms/cramps in unusual places?Now (Eye muscles, thigh muscles and right shoulder.) initially no.
e. Depleted energy? ( Now -; Absolutley! very rarelay get a day where I feel energetic, can fall asleep walking if I just let it happen Im sure!)Initially I was exhausted with that flare but my energy did recover- now it never feels quite right.
f. Unexplained weight loss...before having chronic pain, nausea, etc.? Nope- but I have hypothyroid which has fought against weight loss and in fact brought about considerable weight gain in last five years. Only diagnosed with this two months ago - now losing weight but I am trying.
Anything else?? Remember...we're asking about very early on.
2.) At what age were you diagnosed? started at 28 - only very recently diagnosed with UTCD (39)- still waiting for lupus tests again.
3.) How long did it take to get a diagnosis? see above .
4.) Is there a family history...or do you think this may be more of an environmental issue...or neither? I dont think so on mums side and I dont know my dad so thats real hard to know. Certainly the parvovirus did not help!
5.) For lupus without arthritis: How are the symptoms different? Do you have swelling? I have the pain in my joints without any serious sweling or damage being done from what I can tell and GP says. The pain is bad but it jumps from one area to another - and doesnt look red swollen etc - apart frm neck joints when that flares it does look red, swollen and hot. Once this goes away though there is no sign of long term damage visually or n Xrays done ten years ago - but it was ten years ago.
6.) If with arthritis, are cortisone injections helpful? How often?
7.) How often do flares generally occur? Does something seem to set them off...or do they just seem to happen spontaneously?Initially two to four times a year- now seems less often but I have more ongoing syptoms and damage in between.
8.) Are gastrointestinal problems common (independent of reactions to meds)? Diarrhea? Constipation? Nausea? Frequently get nausea, apparnetly gall bladder function not great, occassional diarrhoea, abdo pains occasionally.
9.) Are you ANA postive? If so, what is your pattern?YES - 640 SPECKLED.
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