getting worse each week and waiting for diagnosis

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New Member

Date Joined Jun 2008
Total Posts : 3
   Posted 6/20/2008 1:48 PM (GMT -6)   
Hi Everyone,
        I am presently awaiting a rheumatoligist appt on 17th July. I have had about twelve years of joint issues and increasing fatigue, all of which seemed to be triggered by a bad bout of parvovirus back twelve years ago (Im 39 now). Originally the Gp did refer me to a specialist who initially told me he thought I had lupus (at this point my joints were swollen and sore all over and I had high plasma viscosity apparently). However a month later when I had further tests they were all clear (with hind sight I had been taking steroids that the GP prescribed). The specialist changed his mind at this point and said he thought my body had just reacted strangely to the virus, in hind sight again he probably expected me to be re-referred if problems re-arose.
         Well ever since that time I have had flares that the Gp described as a retriggering of the original virus that he felt was harbouring in my cervical spine. The flares consisted of my cervical spine joints being swollen and hot to the touch and pushing a disc out completly. Id be in bed for days unble to move, and my neck would seize, my other joints would be sore too but not as bad as the neck area, and I would feel like I had Flu. This would happen approx every few months and I took steroids to manage these flares that the Gp presecribed. As years have gone by I have had lots of other issues arise, migraines (which I now have to take preventional meds for twice every day and they still break through about five days a month), knee pains, right shoulder pains and plantar fascitis (which are all worsening each week now), ulcers in my nose and mouth, and awful faitigue. I dont have any malar rash but I do seem to get itchy and mild rashes with sun etc very easily. If I'm in the sun the joint pains and the fatigue worsen afterwards. My tendons also seem weak as I go over on my ankle frequently and knees "give way" like that at times too.
         Approx two months ago I was diagnosed with hypothyroid and have been taking Thyroxine which has now stabilised my thyroid levels, but the fatigue and joint pains continue. During the blood tests they detected an ANA level of 1;640 speckled and ASMA 1;160 - the doc then referred me again to the specialist and has now admitted I have autoimmune disorder - probably what he calls undifferentiated connective tissue disorder (although he hasn't tested me for kidney damage, liver damage, blood vessel inflammation etc etc). All other antibodies were negative including anti-dsna and Elisa ones. I have since discovered through reading on net that dsdna can be negative unless your in a flare??
          I feel let down to some degree that it took this long for him to detect this despite all the times Ive had problems and hes been aware, and Im worried about my livlihood. Im okay that way presently as i get full sick pay for six months (been of six weeks now) but Im main breadwinner, have two teenage kids one of to uni next year that I need to fund and a big mortgage. Hubby does work but doesnt earn much as he has no qualifications apart from his driving license. I just need to chat to folk who understand all this and can advise me etc. The joint pains are real bad presently and I know a few days steriods would sort it but I cant take em as they would alter blood tests apparently.
          Hoping to hear from anyone who can understand and offer any advice,
                                              Love Manxie xx

Post Edited (Manxie) : 6/20/2008 1:28:22 PM (GMT-6)

pr glo
Regular Member

Date Joined May 2008
Total Posts : 78
   Posted 6/20/2008 4:10 PM (GMT -6)   
I feel your pain Im 36 yrs old and have the same symptoms and more and I was diagnosed with psoratic arthritis as of January 2008 and I have tried soo many meds and I still feel like crap swelling every where I can barely walk sometimes and can't get out of bed sometimes my husband and I both work but between the dr visit copays, copays for meds, mortgage, gas, oil and I have 3 minor children I have to work and I drag myself to work my rheumatologist has taken me out for a week before for my arthritis being inflamed money has been sooo tight I have even had to cancel two rheumatologist appointments beacuse I need to pay for meds thats more important. I hear you loud and clear keep praying and hopefully one day at a time we both will get a bit better and get our lives Back. GodBless you and let me know how your doing.   PR GLo  

New Member

Date Joined Jun 2008
Total Posts : 3
   Posted 6/20/2008 4:21 PM (GMT -6)   
Dear Pr glo,
Thanks for your supportive reply pr glo, it sounds like you are worse hun and I do realise that some folk are worse of! I guess after all these years wondering what is wrong, now Im beginning to really have to deal with this psychologically too - which isnt easy as Im sure you know! I will keep in touch via this board, and I hope that you too find meds etc that work well and ease your struggles.
Love Manxie (Ali xx)

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 6/20/2008 6:32 PM (GMT -6)   
Hey Manxie !!

Welcome to the forum. SO sorry you are in such a pickle.

When is your rheumy appointment?? Yes it would be great if he saw you at your worst. Don't wear any makeup that day either. Be neat, clean and free of moisturizer and makeup.

If you look at the end of my signature there is a link for "Lupus Resources". There are some good posts in there for newbies and one on preparing for a doctor appointment.

Glad you found us!! Keep us posted.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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