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lornak
11-08-2007, 07:26 PM
I went to the neurologist for the dizzy spells that I have been having lately. they have been coming more frequently lately and I thought that they were just part of the lupus. I thought I read that on here, maybe not. but now he is sending me for an MRI,EEG and something where they wire me up like a x-mas tree and I have to wear this thing for 24 hours. I even have to wear this thing to work. :oops: he seems to think that I my be having the TIAs again and that really scares me. does anyone else have these dizzy spells and/or had TIAs? I was just wondering what happens if they are TIAs which means the coumadin is not working, what then? o'yeah, almost forgot. the dr even asked me if I was still working???? what does he know that he is not telling me?

Saysusie
11-09-2007, 06:18 PM
Most dizzy spells related to Lupus are due to CNS involvement and/or Lupus migraines. The nervous system is made up of the brain, the spinal cord, and the nerves throughout the body. It has three distinct parts :
the central nervous system (CNS), which consists of the brain and spinal cord; the peripheral nervous system, a network of nerves that connects the brain and spinal cord to the rest of the body; the autonomic nervous system, nerves that communicate between the brain stem and the body's internal organs; and controls functions such as rate of breathing, blood flow, and heart rate.
Doctor's know a lot about how the nervous system works and they know that it controls all of our thoughts, memories, behaviors, and movements. They also know that different parts of the brain control these functions. However, what doctors don't know much about is why and how lupus attacks the nervous systems and what, if anything can be done to prevent it.
People with lupus do often experience signs and symptoms associated with the body's nervous system, such as : headaches, confusion, difficulty with concentration, fatigue, dizziness, occasional seizures or strokes.
Your doctor is running tests to determine if you central nervous system has, indeed, been affected by your lupus.
Please keep us informed and let us know what your test results are and what your doctors decide to do!

Peace and Blessings
Saysusie

dlavietes
11-10-2007, 01:18 AM
Saysuzie,
I have learned so much from your posts. Before i found this site, I was completely in the dark about everything that was happening to me. I read some info about plaquenol (however you spell it) and i was wondering if anyone else sees swirls around the main object that they are looking at? Or it seems like it looks like smoke/fog when the room is dim? Sometimes when if im looking at a dark object, i see little flickers, like little tiny baby stars. I too get horrible headaches. Sometimes stabbing and then some which stay with me for a while. I have been getting really bad dizzies and this kind of an earthquake feeling, but it is only myself feeling it, nobody around me. My memmory sucks. Both short term and long term memmory. I have been getting a lot more confused, and cant seem to say one sentence without screwing it up :( My concentration is horrible. P.S. by the way, my daughter is typing this up for me because i have tremmers, so my hands shake when i try to type. There is way too much that i would like to ask about, but this is already a novel :shock: if i could get some feedback, that would be greatly appreciated.
Thank you,
Diana 8)

Saysusie
11-10-2007, 08:07 PM
Thank You So Much -

Lupus has been known to affect the brain by causing depression, memory loss, seizures and other neurological problems. In addition to lupus, brain disease may be caused by antiphospholipid syndrome (APS) also called Hughes disease. Hughes disease, a clotting disorder, occurs in about 50 percent of patient with SLE. There are a variety of causes of headaches in systemic lupus. One specific and important cause is 'sticky blood' caused by the presence of antiphospholipid antibodies (as mentioned above - antiphospholipid syndrome or Hughes’ syndrome).

Lupus also affects the brain by causing movement disorders. APS may also cause these movement disorders. Jerky hand and head movements are the sign of this lupus brain disorder.

People with Lupus Migraines experience visual hallucinations typical of what have been called “fortification spectres” (jagged lines that resemble an aerial view of ancient fortifications) like those that occur in a classic migraine. They also report flashing white lights in their visual field. The symptoms of Lupus migraines also includes loss of strength and energy, painful sensitivity to sight and sound, whiteness of the face or head, shivers, irritability and a variety of intellectual disturbances including difficulty concentrating, reading, writing, speaking, and blurred vision and nausea. It is thought that some of the changes in concentration and thinking reported by lupus patients are symptoms of a migrainous process caused by spasm of the arteries of the brain. There ihave been a small number of SLE patients suffering with Lupus migraines who have had fleeting blindness as a manifestation of the migraine. This was also thought to be due to the spasms of the central retinal artery of the brain.
Some Lupus patients began their illness with migrainous headaches preceding several months of all other organ system involvement due to lupus. Most of the time, the frequency and severity of the Lupus migraines got better as other features of the disease including arthritis, pleuritis and rashes improved with treatment.
So, it appears that all of your symptoms could be due to Lupus and Lupus Migraines :?

Peace and Blessings
Saysusie

lornak
11-26-2007, 07:27 PM
well they came back. the heart and MRI were fine. the neurologist found a "small" abmormality in the EEG. so he wants to see me again in 2 months. This one really scared me........I asked him if the dizziness was maybe due to the lupus and he said NO! :roll: that is kinda scary. I trust this man because he is the one that listened to me when I was having the TIAs and figured out about the "sticky blood". but for the past few days, my vision is playing tricks on me. I really have to focus on things to read or to see. it is like my eyes have a mind of their own. and this "fog" is really getting on my nerves!!! I called the vaccume cleaner a ball the other day and my husband just looked at me and walked away :shock:

I am still glad that I have some what of a sense of humor about all this. or maybe I am just crazy from all this crap! :?

Saysusie
11-27-2007, 10:09 AM
Hi Lornak;
Abnormal electroencephalography (EEG) occurs often in patients with antiphospholipid syndrome (APS) and/or systemic lupus erythematosus (SLE) and who have neuropsychiatric symptoms. . Patients with abnormal EEG results are more likely to report memory problems. EEG abnormalities are common and correlate with the presence of antiphospholipid syndrome with lupus, even in the absence of brain abnormalities on the MRI. It is suggested that an EEG should be considered in these patients with neuropsychiatric symptoms, because use of antiaggregants or anticoagulation may need to be considered as a treatment.
Let us know what your doctor decides and what treatments you are given.

Peace and Blessings
Saysusie

lornak
11-27-2007, 06:29 PM
well I already have the cloting problem and have been on coumadin for 1 1/2 years now. yoiu would think that this dr would be able to put 2 and 2 together since he is the one that put me on it.

it just drives me crazy.

this is a wonerful forum for info and help, but I can help but wonder why the "professionals" dont know as much as the folks on this site. maybe they should get their money back from the college they went to or go back for a refresher?????

thats for the input, saysusie, and for always being there.

Saysusie
11-28-2007, 11:49 AM
You are most welcome :lol:
I don't know why some doctors fail to recognize signs and symptoms. It is precisely for this reason that I always advocate that WE must educate ourselves and that we MUST be our own health advocates.
You are doing the right thing by asking questions, learning about your disease and how it affects you and becoming an educated patient. In this way, you will be able to make informed decisions WITH your doctor!!
Best Of Luck
Peace and Blessings
Saysusie

misslisa1017
01-05-2008, 07:29 PM
Hi

I don't think my last post made it. So I'm going to try again.

I suffer from migraines and have since I was 12 years old. In november of this year I had a stroke. My neuro said it was because of my migraines.

I have lost a good chunk of my vision and I am just beside myself.

Anyone ever have this happen to them.? I'm not dx'd with lupus but am being treated for undifferenciated connective tissue disease

my neuro says no that that didnt' cause this yet my rheumy said it could have

my suggestion is that if you ever experience dizziness, have it check out.

I'm so scared now.

Hope everyone is doing well.

Saysusie
01-06-2008, 03:00 PM
Hi Millisa;
Lupus definitely affects our central nervous system and, yes, this can cause some serious complications with our vision and can cause headaches. Even if you are not diagnosed with Lupus, the symptoms of UCTD are very similar to those of Lupus. Has your rheumy tested you to see if you do indeed have Central Nervous System involvement with you illness? Let us know what your doctors and you come up with.
Hopefully, someone with first hand knowledge will also respond to your post.

Peace and Blessings
Saysusie

misslisa1017
01-07-2008, 01:57 PM
Saysuzie,

thanks so much for your reply

I really appreciate it. I love reading your replies on here you have so much knowledge.

How is it that i can be so sick and have nothing showing up in my bloodwork? My rheumatologist things it's possible that I have some things going on neurologically but she's not doing any testing. What type of testing would she do?

I go to see another rheumy at the end of this month. Just for my own piece of mind. Do you think i'm crazy for doing so? I just want to do it.

I like my rheumy but sometimes I question her. She's great and all but ya know. She's not 100 percent.

Most of my blood work comes back clean. So I am beginning to wonder if I even have an autoimmune disease here.

I've been on plaquenil for 3 years or son now....steroids and now 8 other pills. I am so sick of meds.

the new med my rheumy wants to try me on is imuran. anyone try this yet? before i had my stroke, i had bouts of dizziness. i thought it was from the cellcept. so she took me off of it. i just dont' know anymore.

I was on a lot of ibuprofen too.

and of course i suffer migraines

i hate the waiting. I hate dealing with doctors that seem to take forever to get back to you.

my last blood work had an elevated sed rate, but that could have been from my stroke.

also my ana titer was high, but my rheumy said that doesn't mean anything because my ana was negative. does that make sense? Anyone know what these things mean? I dont.

Thanks everyone.

Lisa

sick n tired
01-07-2008, 11:00 PM
Oh my gosh,
I am scared now. I have been having periods of dizziness and weakness. Last time I saw the doc he was thinking that the dizziness was caused by the plaquenil. I did an experiment and went off of the plaquenil for a week and everything got worse. Now Saysusie, I know that it is not a great idea to go off of the meds but I was at my whitts end.
I do hope that it is not tia's for any of us.
And Lornak, I do hope that your docs can find the cause for this dizziness that you are experiencing.

In Him,

Karen

Saysusie
01-08-2008, 12:09 PM
Lisa;
There are many lupus patients whose antinuclear antibody tests are negative. Most of these are patients who suffer with skin rashes and some generalized internal problems. The true number of such cases is obviously unknown. A lot depends on definition, but the agreed figure is probably quite small, approximately 5% of lupus patients.

A patient with Lupus (or other auto-immune disorder, like RA) may have active disease and all the tests are normal. In general, those patients without these abnormalities in the blood are less likely to develop joint damage. Almost all patients with lupus have the presence of the antinuclear antibodies (ANA). If the ANA is negative, then they are usually found to have a SSA antibody or anti-phospholipid antibodies (associated with an increased risk of thrombosis such as a blood clot or stroke or miscarriage). Once again, there are patients, although rare, who have lupus despite these negative tests. Most Sjogren's syndrome patients will typically exhibit an elevated ESR or have a positive ANA, RF, SSA or SSB antibody in their blood.

It is important to remember that while blood tests are helpful in confirming a diagnosis and assessment of disease activity, it is more important to diagnose and treat you based on the symptoms that you are presenting! Perhaps this is what you doctor is attempting to do, in spite of the fact that your tests are negative. If not, then you should insist that your doctor treat your symptoms, regardless of your test results.

Also, it is not uncommon to suffer from migraine-like headaches (known as Lupus headaches). Lupus can cause a range of serious problems related to the brain or central nervous system, including headaches, seizures, dizziness, vision problems, behavior changes or stroke. This is more prominent in patients with antiphospholipid syndrome (APS). Antiphospholipid Antibody Syndrome or APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. APS can occur in people with systemic lupus erythematosus, other autoimmune diseases, or in otherwise healthy individuals.
Patients with these antibodies may experience blood clots, including heart attacks and strokes, and miscarriages.

People with antiphospholipid antibodies have an increased risk of developing one or more of the following problems - do any of them sound like you?: Blood clots in veins, particularly deep vein thrombosis (DVT),
Blood clots that go to the lungs (pulmonary embolism), Blood clots in arteries, Miscarriages – these can occur at any stage of pregnancy but are most common in the late first trimester or early second trimester,
Pre-eclampsia, eclampsia, fetal growth retardation, premature delivery;
Heart attacks, angina, Strokes, Brief stroke-like episodes called transient ischemic attacks (TIAs), for example, loss of vision, Decreased levels of platelets (small blood cells involved in blood clotting), Heart valve problems, sometimes requiring valve surgery or valve replacement,
Persistent or transient blotchy, lacy bluish rash (called livedo reticularis),
Skin ulcers, most commonly on the legs or fee “Catastrophic” APS – a very rare, life-threatening syndrome in which clots form in small blood vessels of multiple organs (such as heart, lungs, brain, kidneys).

Other features that might be associated with antiphospholipid antibodies include: Problems with thinking clearly (loss of concentration, difficulty with reading comprehension and performing calculations, memory loss) -
Neurological problems similar to multiple sclerosis. - Migraine headaches, sometimes with visual disturbances -Other neurological symptoms including episodes of partial or total vision loss, dizziness, vertigo, loss of balance, seizures, and other abnormal movements.

If you've experienced any of these symptoms, you might want to talk to your doctor about testing you to see if you have APS. Please keep us posted!

Peace and Blessings
Saysusie