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View Full Version : still awaiting a "for sure" diagnosis



jleigh
06-13-2009, 02:13 PM
Well, it's been awhile since I've posted on here. To make it short, my neuro thought I might have had MS-- since then, I've found out my LP (lumbar puncture) was negative, got a second opinion about my brain lesions (all are small subcortical white matter lesions in both frontal lobes, and was told the lesions are not consistent with MS), and my ANA test has consistently been high. I've also been extremely tired lately, but all of my other lupus panel tests have been negative. My rheumatologist told me it could still be lupus, but in the very early stages of it without the clearly defined symptoms (I have no butterfly rash, etc.. none of the "classic symptoms")-- everyone seems to agree it's definitely an autoimmune disease, which runs in my family (my mom has psoriasis and some other family members have rheuma arthritis, but no one we know of has or has had lupus).. anyway.. just wondering if anyone else out there who has lupus started off this way??

dsunshine
06-13-2009, 04:51 PM
Sorry to hear still no clear diagnosis but I am sure one is coming and I pray it is not Lupus. I didn't go through what you did but I don't have the butterfly rash or rashes for the most part. I was told I have mild Lupus but again when a flare comes on it sure does not feel mild. I know it is hard going/living day by day without a clear answer but I know you will have the answers you have been searching for soon.

Leksie
06-14-2009, 11:22 AM
I think most people with Lupus go thru a long diagnoses process because Lupus can present itself in so many different ways and symptoms are not exclusive to Lupus rather an autoimmune problem, like you seem to be having. I know for me it was hard going 2 yrs without a concrete diagnosis but don't rush it make sure they account for all your symptoms so they get it right the first time and treatment will help.
Good luck and you are not alone!

mountaindreamer
06-14-2009, 07:57 PM
hi jleigh,

wow, you have been really busy pursuing a diagnosis. Remember, lupus is a very individual disease....it affects each of us differently. keep a journal of any symptoms and how you are feeling each day. this will help the rheumy with a final diagnosis.

lucky7
06-15-2009, 01:43 PM
Yeah, Phyllis is right, we can all mirror each other at times or be completely different at times, its so different from person to person and how their body is flareing at any moment or why it is flareing at any moment. Some things that make me flare might not make someone else flare and visa versa. A journal is your best bet because after a while it can get all mumbled jumbled in your head. Especially on those BRAIN FOG days!!!! :wacko:

Angel Oliver
06-15-2009, 02:26 PM
HOpe you find out for sure soon and i agree with the replies so far.Every one is different.Many here have not yet been diagnosed yet have all the many symptoms.Im one of them.I have a slight rash but nothing like most..mine is very light on my cheeks and arms.Im very fatigued yet have insomnia,bad nightmares,headaches,numbness,stiffness,swellings on legs n arm joints.Then theres the depression,anxiety n wait for it.....panic attacks whoopeeeee lol.x
Thinking of you.
love
Angel.xxx

jleigh
06-15-2009, 05:41 PM
hi jleigh,

wow, you have been really busy pursuing a diagnosis. Remember, lupus is a very individual disease....it affects each of us differently. keep a journal of any symptoms and how you are feeling each day. this will help the rheumy with a final diagnosis.

That is an excellent idea! I guess that would maybe make it easier on the doc, although no one has mentioned it until now ;-). It might be a pain to keep up with, but I think you're right that it'll help me in the long run to get a final diagnosis. I go back to the rheumy on the 29th - she wants to do get a nail bed sample and test my tear capacity in my eyes (shirmer's test?)... have you or anyone else had these done?

Delphinia981
06-15-2009, 06:53 PM
Hi J!

I started out a lot like you (minus the brain lesions)...no definate on the bloodwork, but tired all the time and achy. It took me 10 years for a malar rash to start, and even then, another year before my Lupus titers appeared in all their glory. My GP was convinced for years that I had Lupus...but the tests always came back negative.

Sometimes it can take a while to get a definate diagnosis. I eventually found out that I not only have Lupus, but Psoriasis and RA as well (*sigh*). I just kept pushing and kept pushing. You're on the right path. Just don't lose hope...I know it's hard, I've been there...but you're doing everything right so far. Keep it up, and keep yourself focused. Know that you have friends here who know how it feels!!

jleigh
06-16-2009, 05:57 AM
Hi J!

I started out a lot like you (minus the brain lesions)...no definate on the bloodwork, but tired all the time and achy. It took me 10 years for a malar rash to start, and even then, another year before my Lupus titers appeared in all their glory. My GP was convinced for years that I had Lupus...but the tests always came back negative.

Sometimes it can take a while to get a definate diagnosis. I eventually found out that I not only have Lupus, but Psoriasis and RA as well (*sigh*). I just kept pushing and kept pushing. You're on the right path. Just don't lose hope...I know it's hard, I've been there...but you're doing everything right so far. Keep it up, and keep yourself focused. Know that you have friends here who know how it feels!!

Wow-- the weird thing about your post is that my mom has psoriatic arthritis... are the two linked at all? I was also wondering- right now, the most unmanageable symptom is the FATIGUE-- but no one wants to do anything about it until they have given me a diagnosis- I'm planning on mentioning this to my rheumy on the 29th when I go back to see her, because fatigue has really gotten bad since my last visit with her. Is there anything they can give me in the meantime? I'm taking a multivitamin, magnesium, and a b-100 complex to help, but it's not doing much.. Thanks!!