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shorty12

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 #1 
Hi there! I am glad I found this site. I feel pretty alone in all of this and because I am scared of what is to come I am hoping this place can help. I had two aunts and a grandma that had it. I just turned 34 and after my second baby and having my tubes tied due to severe preeclampsia with both boys. My symptoms just got worse. Everyone was saying you have the baby blues or it is all in your head or you are severely depressed and need to up your Prozac. I found myself unable to get out of bed and achy all the time. Finally a couple weeks ago I had enough and went to my doctor and requested an ANA and thyroid test. I failed the ANA at 1:360 and speckled (not sure if that is at a low end?) and was told more tests were needed. So I go back 1/31/17 for more results. People have told me that you can go positive to negative for years. I was also told Tumaric and eating a well balanced diet with out sugar can help my symptoms with Motrin IB. My doctor said he does not want to put me on any drugs as it is hard on my system and I am young and wants to see if diet and rest will help for now until they can figure it all out. I also have a husband that doesn't accept a limbo diagnosis he said you either have it or you don't and if it comes up negative then you don't. But in with reading on here that is the case for years. I don't know how to explain this to him that it comes and goes and the pain is real. I feel like I am going crazy! Any suggestions on how to talk about how this disease works would be great.
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Robinj

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 #2 
Hi & Welcome

Are you seeing a rheumatologist?
Check out these links for info on dxing lupus and have your husband read it too!!
Hope this helps.

https://www.hopkinslupus.org/lupus-info/diagnosing-lupus/
https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
shorty12

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 #3 
Hi Robin, The doctors are waiting to see what the next blood tests show before sending me to a Rheumatologist doc. And the doc that my Internal Med Doc is working with does not prescribe drugs for low rating lupus? As I do not have any organ issues at this time. Has anyone tried other methods besides these harsh drugs?
Robinj

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 #4 
The first line of defense for lupus is Plaquenil, but I don't know exactly what you are experiencing for symptoms. Did you take a look at the links above? Lupus is dx'd by a combination of symptoms and labs. And since there are many other diseases that mimic lupus, it makes it hard to dx. ANA can be positive for lupus but it is important to realize that even though 98% of people with lupus will have a positive ANA, ANAs are also present in healthy individuals (5-10%) and people with other connective tissue diseases, such as scleroderma and rheumatoid arthritis. Moreover, about 20% of healthy women will have a weakly positive ANA, and the majority of these people will never develop any signs of lupus. 
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Miss.takenbylupus

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 #5 
Welcome! Robin is right the person that you need to speak to is a Rheumatologist. I don't believe a GP has access to medications used to treat Lupus or other AI diseases.. mine doesn't. Trust me you don't want to go out and seek a Lupus diagnosis because we are like snowflakes, no two of us are the same and that makes it a difficult disease to treat. Wait for your appointment to see how your tests go and hopefully they refer you to an appropriate doctor.

I've read for years about Tumeric but have never tried it myself because I don't want it to interfere with my actual medications. However a well balanced diet is always a good place to start for anyone not feeling so great.
Mr. Bun

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 #6 
Hey shorty, welcome!

We have members here, whose ana is always negative or flips from positive to negative and so on.....

Lupus is a weird thing.....it's not as cut and dried as many other diseases.

Robin posted some good links.

Take care,

Bun
Cakelady

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 #7 
My ANA flip flops it drives me nuts
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shorty12

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 #8 
Thank you all. My symptoms are as follows muscle and joint pain, severe fatigue, heart palipatations, low grade fever , one day I'm great and then I'm down for days.
Smith&Lesson

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 #9 
Hey Shorty!

I also have 2 little boys (and 1 giant 6' 7" one), with my youngest being 2 1/2, so I can certainly relate to your struggle -on many levels. I had preeclampsia with my first pregnancy; did you know that it can be autoimmune related? Having an autoimmune disease certainly increases your chances of having preeclampsia, but of course, other things do too. 

https://www.hss.edu/newsroom_genetic-changes-discovered-women-preeclampsia.asp

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380609/

https://www.sciencedaily.com/releases/2008/07/080728114030.htm

"People have told me that you can go positive to negative for years."
And that is the case with some members here, and a few of us are even negative ANA (with SLE dx). I'm one of those in the latter group but had a very high Anti-Smith so I always urge the complete panel to be done since often labs will stop if ANA is negative (this negative ANA SLE is very rare though).  Is your follow up appt on 1/31 with a rheumatologist?  You definitely need to see one, and I hope that you start getting treatment for whatever it is you are dealing with ASAP! <3

I can also relate to hubby needing a definitive answer and for them to understand the nature of this beast, be it lupus or many other AIs, that have symptoms and disease activity that wax and wane (flares).  Answers will come eventually, but yes, it could take more time than you'd like.  Make sure you document your varied symptoms and take pics of anything weird since it seems to be the case that when many of us actually get to the doc, we are not suffering as badly.

Keep us posted and keep in touch please! xoxo
shorty12

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 #10 
Hi Smith&Lesson,
Thank you for the articles and the reassurance I'm not alone raising two tiny boys and a big one lol. My boys  Bodie 3 and Ransom 1 are wild as ever! I will be requesting to see a rheumatologist asap regardless of what these blood results say. I am glad I came to this site!
Smith&Lesson

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 #11 
Woo... ages 3 and 1!  You've got your hands full!!  Being a Boymom makes it even more challenging since they are so physical by nature.  Boys are harder up front, where girls are later, right?  I know we have to spend so much time outside... and soon you'll soon be to wrestling and lightsaber/sword fighting stage.  I try to plan structured activities constantly tho to avoid too much of that crazy stuff.  

And with my hubby, once we had some sort of dx, it made him feel better too.. to know what we're dealing with, but probably just the extra validation that I wasn't crazy or exaggerating the extent of my almost invisible illness too. :)

BTW, My PCP was the one who did all the sleuthing and I still lean on him for my flares, then just update my rheumy. He is very knowledgable about lupus now that we went through an intensive learning process together over the years. [I just don't understand why rheumatologists seem to be the hardest to get 1st appts with and to communicate with on a regular basis.] Anyway, it really is a team approach with all the specialists, but my PCP takes the lead since we have the most history.


shorty12

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 #12 
Hi Smith and Lesson,
Our clinics are constantly changing docs so I am hoping I can get someone who is going to be around for awhile. Even my GP who I love is now leaving me in this limbo, he now won't be there for the results at the end of the month now it is going to be handled by someone else ugh.
I will keep ya posted! Thanks!
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