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Twinmama
05-03-2011, 06:54 PM
hello everyone ,
my Rheumy is sending me for MRI because he things" Lupus is in my brain" his words.
If there is Lupus in my brain like he says, what do they do about it? give me stronger treatment?
??
thank you

tgal
05-03-2011, 07:29 PM
hello everyone ,
my Rheumy is sending me for MRI because he things" Lupus is in my brain" his words.
If there is Lupus in my brain like he says, what do they do about it? give me stronger treatment?
??
thank you


Hi Twinmama,

May I ask what symptoms made the doctor think that you may have CNS involvement ( brain issues) going on? It will be easier to answer your questions if we know which symptoms you are having

Twinmama
05-03-2011, 07:52 PM
the main one would be my ongoing migraines and the fact that NOTHING helps the pain not even Maxalt RPD . It's been going on for 7 months. I have regular headaches 5 days a week and migrane 3 times a week(for a day or 2).He said that the fact that only prednisone makes me feel better makes him think that. They have sent me for some blood tests something abou "sticky blood" as well. I had some red spots on my body. they would come and go.it wasn't a rash. and maybe my psychotic episodes(which I don't want to talk about much) I don't really know. I have a long list of symptoms,like my face and scalp hurts all the time, everyday and a LOT.etc.
I don't make sense of these things that are happening, but the doctor puts them together and suspects something else is going on..
???

Peridot20_Gem
05-04-2011, 05:50 AM
Hi Twinmama,

I hope you have'nt got Lupus affecting your brain but by the affects your getting and also that rash sounds identical to a member on the site
LUVMYFLOWERS and how it's affecting her brain is through vasculitis and she's been on a right coctail of medication's and at the moment she's on presidone to help, it might be worth getting intouch with Diane but i really hope it's not gone that far.

Very best of Luck xxx

tgal
05-04-2011, 01:09 PM
Yeah, I think it is a good thing that you are getting looked at. I have CNS involvement and it is really is important that you find out as quickly impossible so you can get on the right meds to keep in in control. "Sticky Blood" is also something that many of us have and the official name is "Hughes Syndrome" or APS. It just means that your blood had a tendency to clot too easily and that could be very dangerous. If you are not already taking an asprin every day please talk to your doctor about that. It is an easy way to lower the chances of having issues with the APS

Please keep us posted on the results of your tests and never forget that we are here for you!

debrodg4
05-05-2011, 11:39 AM
Hello everyone, this is my first post here. I am interested in finding out about what kinds of symptoms a person has when one has a psychotic episode with CNS lupus. I have many symptoms described above including the headaches, migraines that last for days with aura. I also get numbness and tingling sensations and have had double vision vertigo. I am not asking for you to open up about your experiences with this,,just if anyone knows of what an example of a psychotic episode would be. I believe I may have had that as well.

tgal
05-05-2011, 12:58 PM
Hi Debrodg4. Welcome to WHL! Many of the symptoms you touched upon are/can be part of CNS Lupus even without psychotic episodes. The psychotic episode happen when you are no longer able to judge reality or begin to have hallucinations. The psychotic behaviors can be from CNS Lupus or, for some, it is a symptom of the medications, especially our steroids.

Headaches, migraines, numbness and tingling and eye problems with vertigo are all things that can be just part of Lupus in General. Very few people have extreme CNS involvement. Below is a bit of information about CNS as found on the UK Lupus site. It is brief but gets the information across.

(Reading this makes me wonder if my distrust of the government can be blamed on my CNS involvement! LOL)

Some lupus patients may demonstrate symptoms of psychosis.
Psychosis is defined as an inability to judge reality, marked by disordered thinking & bizarre ideas, often including delusions & hallucinations.
It usually results in an inability to carry out the ordinary demands of living.

About 10-15% of lupus patients will display acute psychosis during the course of their disease.

Most psychotic episodes occur with CNS vasculitis, but others occur as a result of steroid therapy, water intoxication with low blood levels of sodium, seizures, central hyperventilation, or antimalarial therapy.

It is managed with corticosteroids, & antipsychotic preparations.


Please note that the things that actually help our Lupus, steroids and antimalarials are the same things that can cause psychotic episodes that are NOT directly related to the disease.

debrodg4
05-05-2011, 01:09 PM
Thank you for explaining about the psychosis involvement in CNS lupus. I understand more clearly now what is meant by that. I did not realize that the steroids or palquenil could cause this as well. Thanks again

tgal
05-05-2011, 03:02 PM
Debradg4,

If you are having signs of CNS involvement you really have to have it looked at by a doctor. CNS involvement is nothing to play around with as it can cause so many issues. CNS involvement can cause long term damage if left untreated.

Never forget that we are here for you as long as you need us!

Twinmama
05-05-2011, 10:17 PM
I have my MRI scheduled for this month. I'll keep you posted :)

tgal
05-05-2011, 10:41 PM
Oh Good! I will keep my fingers crossed for you!

steve.b
05-06-2011, 06:03 AM
twinmama, can you please let us know a date.

there are a few good people who pray, for our lupie family, when going to these type of visits.
others of us like to know, so we can offer good thoughts.

it is good to keep our family informed.

Twinmama
05-10-2011, 07:10 PM
Thank you everyone. The date is May/23

Peridot20_Gem
05-17-2011, 01:54 PM
Hello Twinmama,

How are you feeling? and i hope you day as been less pain free for you and all the best for the 23rd. xxx

Twinmama
05-21-2011, 07:50 AM
Hi everyone, . pain is there everyday, worse at night. as you all know! does the pain EVER go away? EVER??? I went down with my prednisone dose , and pain is definitely worse . will it get better? or will I be on prednisone forever? I don't like that drug. but at the same time I can't live without it. sooo frustrated and mad lately. I have no one to talk to about this, my husband and my friends think I'm a big cry baby if I would say something. so I just keep quiet all the time. and my husband thinks I'm OK and that nothing is wrong with me! do I have to live like this all my life? pretending that I'm ok so others don't have to listen? I don't want pity, just understanding!

tgal
05-21-2011, 07:58 AM
Hi everyone, . pain is there everyday, worse at night. as you all know! does the pain EVER go away? EVER??? I went down with my prednisone dose , and pain is definitely worse . will it get better? or will I be on prednisone forever? I don't like that drug. but at the same time I can't live without it. sooo frustrated and mad lately. I have no one to talk to about this, my husband and my friends think I'm a big cry baby if I would say something. so I just keep quiet all the time. and my husband thinks I'm OK and that nothing is wrong with me! do I have to live like this all my life? pretending that I'm ok so others don't have to listen? I don't want pity, just understanding!

Once they get it under control it will not be pain all the time. The problem is getting it under control. I too am having that issue. As much as I hate prednisone I can't come off of them or even down much. They are upping the amount of methotrexate in hopes that I can get under 40 MG of steroids. There are better times ahead Twinmama. It just takes awhile to get there! Remember to stay out of the sun and use sunscreen even indoors if you are under florescent lighting. That should help wth some of the pain and symptoms!

Keep us posted!

Gizmo
05-21-2011, 08:17 AM
Twinmama,
If you have CNS involvement or vasculitis then your lupus isn't under good control, therefore it isn't surprising that your pain isn't under control, either. When your MRI results come back, have a real heart-to-heart with your doctor. If you get a stronger regime to control your lupus, then hopefully your pain will settle down along with everything else. Your doctor may be reluctant to give you narcotics if you are having psychotic episodes, but he may have some other ideas for making you more comfortable. I hear that some people get relief with accupuncture, massage, warm water pools/hot tubs, yoga and tai chi.

As for your hubby - has he ever gone to the doctor with you? I wouldn't take him if you think your doctor might downplay your misery. But if your doctor is concerned about what is happening, take your husband along to hear the news himself. Check out the Lupus Foundation, Arthritis Foundation and local hospitals to see if they offer any classes for patients and families dealing with lupus. He may just be in denial - that seems to be the coping method of choice for some men.

In the meantime, this is a great place to find a sympathetic shoulder and know that you aren't alone in dealing with your disease, your pain or unsupportive family and friends.

Islablue
05-23-2011, 09:43 AM
I agree with Gizmo, take your hubby with you to the visit. I know for me, it helped. I saw 23 doctors before I was diagnosed and we learned I do not go alone. Docs have the uncanny ability to downplay what you are trying to tell them. They send you away and then they go home and feel great while you are still suffering. Excuse my french.. but F@$% that! Here's something that helped me, take pictures. I take pictures of my symptoms and bring them with me to the doctor. A pic is worth a thousand words! (((hugs)) good luck @ your appointment and keep us posted.

Peridot20_Gem
05-27-2011, 11:44 AM
Hi everyone, . pain is there everyday, worse at night. as you all know! does the pain EVER go away? EVER??? I went down with my prednisone dose , and pain is definitely worse . will it get better? or will I be on prednisone forever? I don't like that drug. but at the same time I can't live without it. sooo frustrated and mad lately. I have no one to talk to about this, my husband and my friends think I'm a big cry baby if I would say something. so I just keep quiet all the time. and my husband thinks I'm OK and that nothing is wrong with me! do I have to live like this all my life? pretending that I'm ok so others don't have to listen? I don't want pity, just understanding!
Hello Twinmama,

I am sorry with how you feel because i felt like my hubby did'nt really understand at first and joining the forum did me the world of good but i still needed to open up to my hubby and i took him along to one of my dermo appointments and to one of the rheumo ones and now i could'nt wish for a better husband it soon woke his eyes to what's going on and everyday that goes by the concern from him, it's actually pleasing knowing i've got a strong shoulder. (Drag your hubby along mate, he needs a serious wake up call)

There's nothing worse than bad heads and the prednisone not helping but if you need it, then keep to it.

I just hope on the 23rd there's abit more light throwed into why your suffering so bad with your head and i do wish you the best of luck.