Rule out again for Rheumatoid arthritis and lupus

[MsWobbles]

Hey, MSers and Limbolanders,

Because of my false-positive Lyme test results, I'm currently being ruled out for various autoimmune diseases because they can cause a false-positive Lyme test result such as I had.  

Well, by blood tests I've ruled out for rheumatoid arthritis (my mom had that very, very bad) and I also ruled out for lupus.  Duhhhhh, no surprise to me!  My joints don't bother me - it's my muscles and coordination!! How come, so far I've ruled out for so many conditions, have MS symptoms, am heat-sensitive, yet no one suspects, or can say "it's MS"????

WAF

[MsWobbles]

Thanks for your insights!  

Wobbly, I have read that having a family member with RA or any other autoimmune disease increases the potential that you could have an autoimmune disease, and not necessarily the same one.  That holds true for you.  My mom had RA so bad!!  I'm glad I don't have that.

Marisa V, thanks for your kind encouragement.  I don't want an MS diagnosis if I truly do not have MS.  I just want a diagnosis of what it is I actually do have so I can start treating it and possibly get back to normal.  

I have been patient - for me it has been well over 6 years that I have been trying for an answer.  I guess what I find so frustrating is the indifference I have experienced or even the active suppression of a diagnosis.  Often when I have had significant symptoms, the neuros have not notated them in my medical record (which leads me to believe they are trying to block diagnosis).  If I had seen my neuro exams accurately reported in my neuros' documentation in my medical record, I would not feel this way.

Funny thing about lab tests:  They may be inaccurate.  Lab workers are so overloaded with work to do and pushed to do as much as they can.  Mistakes can be made.
That's why I was tested twice, years apart by different labs, for RA factor and lupus and both times, the tests came back negative, so I can be pretty sure those results are accurate - that I don't have RA or lupus.

Actually I'm beginning to think that my "horse may sing" (never heard that expression before, but I really like it) only on my autopsy.  That's when my son will finally learn what it is that I had, which he may  (God-forbid) inherit.

WAF


WAF

[Wobbly]

can't really answer your question, have you had a brain and spine MRI?  any lesions?

you know, I'm Dx with MS, I have an identical sister who has RA, I don't have RA.  But the Neuro said it part of autoimmune and thought it was interesting.  I think it helped get me a Dx..

take care
wobbly

[MarisaV]

So far, my experience has been that Doctors like to rules things out quickly, but don't like to diagnose things quickly.

I haven't been diagnosed with anything, but after a year of being told by three different specialists that I definitely didn't have Lupus, because a negative ANA "proved" it. I now show up with a positive ANA and positive anti-Sm(specific to Lupus)... so now they're thinking _maybe_ it could be Lupus.

A lot of times the philosophy is that tests are not significant (they don't actually "prove" you have or don't have a particular disease), unless there's a high probability of a disease being present. That changes the significance of the tests (Bayes Criteria), and increases the likelihood of a particular disease being present.

I know its difficult, but you have to be patient, and keep trying. Keep documenting your symptoms, keep seeing doctors, and eventually the horse may sing.

A diagnosis of MS is a serious thing. It could affect you being able to get insurance, being discriminated in employment, and the treatments can negatively impact your health and financial situation. The doctors don't want to diagnose you with this if there's the slightest chance its something else.

Take care

Mar