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Discussion Starter #1
Does normal blood work mean no Lupus? I have had all blood work done for Lupus. I have only had it checked once. How often should I have it checked?
Did anybody have negative blood work done and then later found to be positive?

Also could CNS lupus always be detected by MRI or CT?

Thanks for the help
Mindy
 

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Hi Mindy,

Unfortunately normal blood work doesn't mean no lupus - it can mean that your condition is in remission or being controlled by medication or they might not truly reflect how you feel.

That seems to be the group I come into. Before my diagnosis my bloods were altered until I finally had a positive ANA. Since being on the Plaquinel my bloods are pretty near perfect and I've never had a positive ANA since. I've been flaring since January and my bloods show no sign of it but thankfully my doctors know that I am still unwell.

I'm afraid I can't answer your CNS question but I'm sure someone else will come along that can. I hope you are keeping well.

Hugz,

Pam xxx
 

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If you continue to be ill with symptoms consistent with lupus, then periodically you should have the blood tests for it rerun. Many people report getting sick first, for up to a few years, before positive blood work was found. This wasn't the case for me, but there are several reports here of that happening.

Furthermore, there is something called ANA negative lupus. Only the most experienced lupus specialists seem to be confident enough to diagnose that though, unless some more concrete evidence such as a skin biopsy or a kidney biopsy shows lupus.

I'm not well versed in CNS lupus, but my understanding is that often there is some sign of it visible on MRI - especially if it is done with contrast (then more of an MRA actually). However, things aren't always found on MRI/MRA and people have often had a few normal MRI's before something was found abnormal. Hopefully some will come along in the next day or two with their personal experiences and/or some good links on the topic.
 

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Discussion Starter #4
thank you

Thank you for the quick replies. I do appreciate it. As I'm sure you all understand limboland is no fun. I will talk to my doctor and ask him to periodicaly check my bloods.

I am having some sx still but nothing like I was.

I do hope some experienced CNS people will chime in.

Thank you
Mindy
 

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Midy, You may well end up positive but in the meanwhile need treatment for your symptoms. This is the way it went with me.
x Lola
 

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Mindy,

Are you sure that you have had all the blood tests? Do you have a copy of your results? There are several links in the blood test post at the top of this forum. You may want to look at several and check that all relevant tests have been run.

Take care,
Karen
 

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Hi Mindy :hug:

You are worrying yourself again with all this (((((((Mindy)))))))).

How are your Neuro signs lately?

I guess the main thing there is that if the Neuro did a good neurological exam on you? did he? and your MRI/MRA were fine then I would think that is an excellent sign that you are doing ok in that department. Even if nothing is picked up on the scans the Neuro will detect signs of neurological abnormalities - in that case they keep following you and might run further scans. Be sure to go back to them if your problems haven't improved or if they get worse though.

love
Lily
 
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