[Cinnia]

Hi everyone,

Came home last night from the hospital. Had another stroke in the same area in my brain. Tuesday night I felt a little weird. I was a little confused and couldn't really think. In a couple of hours, my arm was completely numb, and knew this was not normal. Called 911. Spent several hours in the ER and was given aspirin. Had a CT scan and there was no bleeding. The next day had a MRI, showed I had a stroke in the same area that I had last year when that stroke was a bleeding.

So here is my question. How am I going to prevent another one? The hospital doctor didn't even believe it was a stroke even though the neurologist said it was definitely a stroke. And the hospital thinks my medication is controlling my lupus enough. If that was the case I wouldn't have a second stroke. He only saw that my anti DNA was negative so my lupus isn't very serious. I don't even think he knows much about this. I am so frustrated. I am only 25, it's just not fair. I feel like crying but I know it's not going to help. I just want to know what I need to control my lupus. I am only on 10mg of prednisone. Does anyone know what to do?

Cinnia

 

[Katharine]

Hello Cinnia and (((((((hugs))))))))

It sounds like you need to have a very serious discussion with your docs. Perhaps starting with the neurologist might be the best place as he seems helpful?

You are right that that other doc doesn't seem to know much if he is looking at anti-ds dna as an indicator of disease activity. Apart from it not being a good indicator of disease activity, the prednisolone you are on would most likely mask such things in your blood.

I'm sorry I can't suggest more but you really need to get on to your GP or neuro or whoever is going to back you in this to make sure this doesn't happen again.

Katharine

 

[WanePoetic]

AAH! I have no advice to offer, but I am very very sorry!! I can't imagine anything much scarier than what you've been through.

 

[KarolH]

Cinnia,

I think you need to find a good Neurologist and a good Rheumatologist. I am curious as to if you have APS or if you have ever been tested for it? If not I would think you may want to ask to be tested. APS can cause strokes along with number of other things, especially when your young and having strokes like you are.

I would not worry about the difference in opinion of the doctors as to if you had a stroke or not. The Neurologist knows the brain and that is what he specializes in. If he said you had a stroke then I would bet you did.

I am sorry your having so many issues. You mention that your on Prednisone but are you on Plaquenil or any other immune modifying drugs? If not this is where a good Rheumatologist comes in. Also, people who stroke like you have are typically placed on blood thinners, are you on one?

Sorry so many questions but just concerned about you. Keep us posted as you move forward and try and keep your chin up. Good doctors are worth their weight in Gold so get out and find one.

 

[Cinnia]

I am completely frightened.

With my first stroke, it was bleeding. And the second time, I have no idea since the hospital doctor wasn't at all helpful. I will definitely talk to my PCP about APC. My current rheumatologist doesn't have many experience. She kept increasing and decreasing my prednisone. I was hoping to see a rheumatologist while I was in the hospital but the hospital doctor did not see it was necessary since I have an appointment with the rheumy September 1.

Last month I was on Imuran but I could no longer take it since my white blood cells were pretty nonexistent. So now I'm only on prednisone and nothing else. The hospital doctor stopped aspirin since apparently it's not a clotting problem but I didn't see the results. I just don't trust him at all since he said that my anti DNA was negative so that means I'm fine.

Cinnia

 

[Katharine]

Er, I wouldn't stop that aspirin unless your rheumy expressly tells you to!

Make sure you really push home to the rheumy on the 1st that you need this investigated further.

 

[KidsPT]

Can you call your Neurologist and get in for a f/u appt and clarify with him about the bleeding vs. clotting stroke and if you should be on aspirin, checked for APS, etc...It is very improtant that they determine which type of stroke you had as they are treated very differently. A good Rheumatologist would help too, maybe a second Rheumatology opinion is in order? Are you near a Medical School/major Medical Center?

 

[donna kosk]

i like to give you a big (((((((((((((HUG)))))))))))) FIRST
you are so young to have to deal with having strokes i cant imagine what its like and i think your so brave to keep fighting you must have really good family and friends to cope with this.i cant add anything to whats been said already only to keep strong and keep your chin up take care and try not to worry because that wont help with your illnesses


donna

 

[Cinnia]

Hi everyone,

Thanks for the support. The hospital doctor stopped the aspirin. The first stroke I had last year was a bleeding. This second stroke I'm not quite sure. It definitely wasn't a bleeding so it might be a clot. But because I had a bleeding last year, they didn't want to use a stronger medication to prevent clotting.

I don't have a neurologist... the neurologist I talked to was due to being in the hospital. I have Kaiser. I do have another appointment for the "second opinion" but that is on Sep. 1. My regular rheumy is new and doesn't have enough experience. I guess I'll talk to about my concern. But I hope this time they do something.

Cinnia

 

[KarolH]

If you like the Neuro in the hospital then why not schedule to see him. At least he agreed it was in fact a stroke.

Maybe you should call the LFA (Lupus Foundation of America) for a referral to a Rheumatologist that is knowledgeable about Lupus and local to your area.

I wish you luck and I know your scared. Getting better doctors in charge of your care is half the battle won. Make sure you ask if you have ever been tested for APS.

Be well and gentle hugs to you.

 

[lin]

cinnia, i know how you feel, its happend twice to me, its a scarey feeling ,i don't know what to say

im due to go to hear my mri results the begining of october, but hubby did have a look at the pc when dr left the room it did say accrelated vascualer disease (sp) So i want them to explain to us ,as he said he wants the radiograher to go through it with the one before that scan i mean. hope things settle for you, and they get you on the right treatment to help you

Lin xx

 

[Cinnia]

Thank you for the support everyone. I'm going to see a rheumatologist tomorrow, my current rheumy who isn't very helpful. She just doesn't have enough experience and doesn't seem to know what to do since my lupus is rather aggressive. I just hope it goes well. Thanks again.

Cinnia

 

[Pink Pearl]

Good luck tomorrow! You don't say where in CA you are. If you are near LA, Dr Wallace is the head of the UCLA lupus clinic which is quite well known. Even with hmo's you can get seen out of the system if you are not able to get your care within their system. SO, be proactive for yourself. If your rheumy is not able to deal with all that is going on, you need more care.

Depending on where in CA you are, there may not be a LFA chapter near you. [Some of the chapters opted out of the LFA when it went thru some changes back in the late 1990's.]

If you can't get to LA, perhaps call the UCLA Lupus Clinic and ask them for a referral to a doctor(s) near you. Teaching hospitals get this type of call often.

Take care, and make sure to take your symptom journal with you.
Sally

 

[KarolH]

Good Luck today and let us know how the appointment goes.

 

[debatat]

Hi, I hope your appt went well and that they managed to sort things out for you. I can imagine how scary it must be, I have had a TIA and know how freaked out I was. I hope they have kept you on the aspirin. I hope your rheumy treated you well.

Deb