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Lupus Mom
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Discussion Starter · #1 ·
Hi
My daughter went to the ER with a very bad flare and a headache that was so bad. She has had a lot of migraine headaches in the pass. The ER doctor order a cat scan of her head. The primary doctor got her results back and there was two areas of low density which could be cyst or infractions. She just started imuran and is taking plaquinell,and blood thinner. Has anyone else had a ct scan and had the same thing, and if so how was it treated. She will be having a MRI this week to see what it is. What I have read is that Lupus patients can also have lesions just like MS patients. Does anyone get these headache with a lot of pressure in the back of your neck? The Imuran she just started almost 4 weeks ago and can tell a different already she had a wonderful week last week had more energy and felt happy and alive again ( its been around 3 years since she has felt this good) and then the migraine. Lupus can be so cruel . They will up her dose to 100mg next week after they get the blood work back to check her liver and blood count, I hope and pray everything is good so that they can up it since she is doing so well on it. Thanks to everyone and I pray that everyone will have a lupus free day ahead.....:)
 

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Hi Angie, and a warm welcome to you and to this site. I
have everything that you have posted, except the CT scan
and the MRI. I have migrains, all my life, and I was on
Plaquinel and imuran. For me, the imuran did not work, but that is just one case. One important thing to know is that Lupus is called the disease of 1,000 faces for a good reason: that is how many other diseases it imitates. For me, I had Fibro, but a lot more and when they started to find ou, they went straight to CT&MRI (Iforgot that they
did that) and wanted to diagnose me with MS. Later found out it wasn't.Lupus is cruel, but with the right meds, it can be managed,. I hope everything goes ok with her, do let us know. Tell her to be well and to smile.:wink2::rolleyes:
 

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Hi Angie -
My oddessy with lupus began with excrutiating headaches - just like you mentioned your daughter has - landing me on more than 1 occasion in the ER. Since beginning Imuran and NSAIDs, I have not had an episode, which I am greatful for. I know it took a couple months treatment - but hopefully this will be the same for your daughter!

Chal
 

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Lupus Mom
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Discussion Starter · #4 ·
Did you have a lot of pressure in your head and also the pressure starts at the top of your spine in goes up the back of your neck? She is having her MRI done today. Lupus is like a roller coaster and you never know what is around the corner.:sad: thanks again for all the reply Its nice to have all of you to help during these times
 

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Hi Angie,
You have a great name! I get migraines at least once a month and they always start with the pain from the back of the neck all the way over my head. It's a tight pressure pain that feels like my head is literally going to explode off my body. I have had one MRI and checked out fine. I also think it's just part of lupus. Hope your daughter feels better. She is lucky to have such a great mom. Take care!

Angie
 

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Hi Angie, I just wanted to reply to your question. Yes, my pain was at the top of my spine and straight up my neck, still is. Best of luck hon.
 

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Hi Angie,

I wish your daughter luck with her MRI. Hopefully it won't take too long to get the results.

It took three MRI's spaced about every 9 months before any lesions showed for me. The shape and location were not typical of MS so it was deemed they were caused by Lupus. The location of the lesions were consistent with the symptoms I was having, headache being on of them. The neuro had ordered a head, cervical and thoracic MRI's all with and without contrast. The cervical one showed inflammation explaining the pressure and burning I was having in that area. Is your daughter having one in the cervical area also?

I hope her headache goes away soon.

Take care,
Lazylegs
 

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I can totally identify with the neck pain with migraine. Sometimes I feel like my migraine starts in my neck - it is definitely head pain type of pain, but it is in my neck (as opposed to a regular type sore neck type of pain).

My neurologist explained why this happens with migraine, but I have forgotten what the explanation is. But I do know that if definitely can be a migraine thing.

hgh

raglet
 

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Discussion Starter · #9 ·
Update On Daughter

Just wanted to update everyone on my daughters MRI, The doctor said that there was only one small lesion and nothing else (thank god no surgery) the CT had us all scared. The General doctor said that maybe she had a small stroke which caused the lesion, but I think from what I read that lesions are caused by the Lupus flares. She is still taking the Imuran and due to up the dose to 100mg as soon as they get her labs back. She is having a flare now, but have notice that not as bad as they were before the medicine. I hoping that with the increase in the medicine her flare will get less and less. When you flare do you have problems remembering things. She sound like she is drunk . Thanks again for all your replies they help a lot. Best wishes to everyone.....
 

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Yes,

Angie..I sounded like I was drunk, on a few occasions, when flaring. I was quite the talk, with a group of friends of mine..that were sure, I was hitting the bottle, or can...:)

I too, get stabbing pains in my head..

I hope, your daughter feels better soon..Angie.

Best Wishes,
Sandy
 

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Hi Angie,

Imuran is a good drug and the improvements should continue once they raise the dosage :luck:

She sound like she is drunk
Do you mean she is slurring her speech?

love
Lily
 

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Discussion Starter · #12 ·
No, she just sound very very tired and drained. But today she is much better, ( she got a steroid shot yesterday and a steroid pack) the pressure in her neck is gone. No headache. This flare was not as bad as before. They seem to start with a bad headache and the down hill. No joint pain or swelling this time. So maybe things are look up. It like the lupus makes her brain and head swell when she is flaring...... I hope the Doctor calls today to up her medicine. Her son is having surgery (he's 7) on Monday to correct his throat... she will be gone to Brigham all next week with him, so I was hoping this flare would go away so she could take care of him. (God only gives us what we can handle) Will the imruman help with lesion that is already there? Thanks again for all you reply , have a lupus free day .... Angie:p
 

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Hi Angie,

Oh that's a relief then because I thought she may have been having mini strokes.

The lesion that is there will probably not go away, occassionally they don't show up on subsequent MRI's though, it depends on what it actually is.

Is she ok when she is not flaring i.e. back to normal?

The brain has amazing healing properties anyway. It has an ability to find other pathways when one part is damaged. I had a whole major blood vessel blow out from Vasculitis and it has not really affected me, well not to my knowledge :hehe:;):)

I hope she continues to see improvement and that your grandson's operation goes well.

love
Lily
 

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Discussion Starter · #14 ·
Yes she is as normal as any other person with lupus.... Its a hard life with the ups and downs.. She just had a wonderful week before this last flare. But thinks to the new medicine the flare seem to not last as long and was not as bad. The headache is the being and it was lasting for days before the medicine this one only lasted a few hours. Then she had the fever, fatigue , Pain in joints and swelling was much better then the last flare. She had her blood work done for the medicine and everything came back normal , her liver and kidney are fine, so when she goes to the doctor on Monday he should increase the medicine to 100mg. We did have a scare the test showed her hemo (red blood cells were low) but we had it repeated today and it was normal. She is still very tired and is bruising a lot more. She is also on blood thinner (but her pt is on 1.3) she will have to increase the blood thinner also... The hard part of it all is getting the right amount medicine to take care of everything with hurting the good things in your body. I have loved hearing from you all , and thank you very much for reading my post and replying. I am just a concern mother and feel if i learn everything I can about lupus i will be able to help my daughter more. Take care and god bless...:p
 
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