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in limbo

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Old 06-05-2009, 04:08 AM   #1
Join Date: Feb 2009
Location: Canada
Posts: 65
lild4 HB User
in limbo

I have psoted on other boards. I am still waiting for some sor t of diagnosis. I have another mri scheduled in the future. The neurologist wanted to know if I have been tested for lupus.

Some of my symptoms: numbness and tingling, itching, eye pain, fatigue, sensitivty to certain clothing (not pain, but itching and severe sweating within min of getting dressed) night sweats, raynauds, dry eyes,

after checking with gp I have been tested for lupus, and tests were neg. Is it possible to neg results and still have the diseas. No one wants to answer the question.


thanks in advance

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Old 06-05-2009, 12:02 PM   #2
Junior Member
Join Date: Apr 2009
Location: New Jersey
Posts: 17
jennynj HB User
Re: in limbo

Hi! I wanted to respond to your post because I know it can be frustrating to not get feedback....especially when you are nervous. I am IN NO WAY a Lupus expert. I only know what I know because my sister was dx last year and I had some "funny blood" as my Rheumie likes to say... so here it goes.

You need 4 of 11 criteria and WITHOUT any blood work to solidify is unlikely you have it. I would check to see which tests were negative to make sure they did the right ones. Also, I have very similar symptoms and got bounced around. I had one + blood test and no symptoms or other blood work for, after temporarily ruling that out, we are checking for Lyme. There are a lot of similarities and according to what I have read, could possibly cause Lupus antibody test to be elevated.

Anyway, hope this helps. Please post if you figure it out!

Old 06-06-2009, 08:25 PM   #3
Senior Veteran
Join Date: Mar 2007
Location: USA
Posts: 968
goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: in limbo

I, too, know how frustrating it is not knowing what is going on with your body. I know I was much more able to face my diagnosis than the not knowing. I had lab test that showed a positive CRP (C reactive protein), RF Igg, RF Igm and ANA titer. This was discovered on my seeing a third Rheumatologist, who finally diagnosed the lupus. I also have fibromyalgia, post cervical fusion and heart disease so it was difficult to address. From the beginning of my symptoms to my lupus diagnosis took about 5 years and numerous doctors. It was well worth the time and effort though as I feel I finally have a handle on my care and a doctor who is proficient not only with fibromyalgia treatment but lupus as well. Just don't give up. It just takes time and effort and continued interest to find out the cause of all your symptoms. I hope you soon have your answer and a well defined treatment option.

Old 06-08-2009, 09:20 AM   #4
Angel MJ
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Join Date: Apr 2009
Location: Johannesburg
Posts: 221
Angel MJ HB User
Re: in limbo

hi there lild4 ... sorry to hear you are struggling at the mo ... welcome to limbo lounge! many many people have been there and can relate!

to answer your question: Is it possible to neg results and still have the disease
YES, there is a small % (3-5%) of lupians that continually get a neg blood results but do have other symptoms and are lupus positive.
There are ppl (JennyNJ) that have pos bloodwork but never get other symptoms and are lupus neg!
bloodwork is only part of the dx'ing criteria ... there is no 1 test to test for lupus but a band of bloodwork that can be done (ANA, dsDNA plus others) but these are threshold tests, could also indicate other AI (auto immune) involvement ... so it is critical to have a holistic approach and your medical history holds clues that the doctor can pick up on
a rheumatologist is the best doctor to dx lupus
read the sticky posts (3 permanent posts at the top) you need 4 out of 11 (not necessarily at the same time)

hope it helps!

Old 06-08-2009, 10:45 AM   #5
Join Date: Feb 2009
Location: Canada
Posts: 65
lild4 HB User
Re: in limbo

thanks for the response

I did check out the sticky posts. I will see my dr for another referral. and I will continue to look for answers.

Some days are just really frustrating, but I know that I am not the only one that is going thru this.

I will keep everyone in my prayers


Old 06-08-2009, 11:58 AM   #6
Angel MJ
Senior Member
Join Date: Apr 2009
Location: Johannesburg
Posts: 221
Angel MJ HB User
Re: in limbo

sorry lild ... also bloodwork changes too. with disease activity results can be higher, in remission results can come back *normal* etc

get to another doctor ... one you can talk to & trust. sometimes takes a few to find the right one!
hang tight & keep posting - ppl here DO understand how frustrating it can be! we are here for you!

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