More Neurology Info

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I got this information from the website http://members.shaw.ca/tiderington/cnslupus.html

NEUROPSYCHIATRIC – S L E
AKA 
CENTRAL NERVOUS SYSTEM – S L E 

FYI *Re: Lupus Cerebritis and Cerebral Vasculitis*
The suffix “itis” means inflamed, so one would expect to see inflammatory changes in the brains of SLE patients.
However, various studies have demonstrated minimal inflammation, particularly of the blood vessels.
Therefore, the terms above should be considered misnomers and it is preferable to use the terms either/or NP-SLE, CNS-SLE.

SYMPTOMS or Manifestations of CNS-SLE

In addition to headache, NP-lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke.
Characteristic abnormalities are frequently found on brain MRI, lumbar puncture and electroencephalogram.

The diagnosis is not always straightforward.

Although there are no “definitive” tests for CNS-lupus, there is a type of brain scan called a “SPECT brain scan” that may be positive even when an MRI brain scan is normal.
There is also a blood test called an anti-ribosomal-P-antibody that, when it is positive, may be helpful in establishing the diagnosis.

INDICATORS for Diagnosis of CNS-SLE

NP-SLE is extremely variable.
The revised criteria for the diagnosis of NP-SLE lists only coma and seizures, however, the clinical indications of the disease can vary from profound and life threatening neurological disturbances to ongoing mild complaints such as headaches or behavioral disturbances.

Further confounding the ability to diagnose NP-SLE is the fact that a patient may develop a psychiatric illness as a consequence of having lupus without having NP-SLE.
Eg: ‘reactive depression or “Why me?” and/or the patient may develop a psychiatric illness entirely separate from the lupus diagnosis entirely.

Also, certain therapies may produce psychiatric disturbances.
Steroid therapy, particularly in high doses, can produce psychotic behaviors.
As well, the fact that many patients with systemic lupus present with cognitive function difficulties, makes it a challenge for the physician to differentiate between what is related to active systemic LUPUS, what is related to corticosteroid treatment, and what may be related to depression or neuropsychiatric lupus.

As the therapy used to treat patients with SLE can cause psychiatric problems, it makes it very difficult for the rheumatologist to decide if the patient is suffering from primarily NP-SLE, reactive depression or the side effects of steroid therapy.

It is usually necessary to rule out other conditions that may mimic central nervous system manifestations of systemic lupus erythematosus, including infection and toxic metabolic states.

CNS-SLE DIAGNOSIS

The rheumatologist has a battery of diagnostic tests and procedures which can aid him in making the diagnosis of NP-SLE.
These include studies of spinal fluid, Brain Scan, Electroencephalography (EEG), Cat Scan and psychometric testing.
But at present, there is no single test or group of procedures that can unerringly diagnose the illness in all cases.
The tests can merely increase the index of suspicion that NP-SLE is present.

To put this in the proper perspective, a patient who has multi-organ involvement and signs of severe NP-SLE, such as seizures, strokes, etc., can easily be given the diagnosis of NP-SLE.
However, these patients represent the exception to the rule.
The typical patient shows joint pain, skin rash, a positive ANA and mild symptoms of NP-SLE such as headaches and severe anxiety.

For such a patient, the rheumatologist is confronted with the difficult decision of determining if the headaches or anxiety are truly caused by NP-SLE.
Moreover, for certain patients, their only indications of SLE may be NP-SLE, further adding to the diagnostic quandry.
Multiple investigators are attempting to find better tests to diagnose NP-SLE, such as the test for antinerve cell antibodies.

TREATMENT of CNS-SLE

Since the indications of NP-SLE can vary from very severe to mild symptoms, should all patients with NP-SLE be treated with steroids, irrespective of the intensity of the disease activity?
This is a controversial subject among rheumatologists.

Patients with central nervous system manifestations of lupus erythematosus who present with organic brain syndrome or coma can be treated with intravenous methylprednisolone pulse therapy.
Patients with severe or resistant symptoms may also require treatment with intravenous cyclophosphamide and/or plasmapheresis.

Conclusively, individuals with major manifestations of NP-SLE require aggressive therapy with high dose steroids and perhaps immunosuppressive drugs, plus other appropriate treatment such as anti-seizure medication.

But what should be done for patients with minor manifestations of neurologic and psychiatric NP-SLE?
At present, the treatment of symptoms is most judicious, such as the control of headaches and migraines with appropriate medications.

CONCLUSIONS

The study of NP-SLE is still in its infancy, but certain strides are being made.
For example, it appears that at least one subset of patients with NP-SLE has been identified.
In these patients, NP-SLE is indicated by strokes, apparently because an autoantibody predisposes the brain to develop blood clots leading to strokes.
An enormous amount of investigative effort is required to further understand the mechanisms relating to NP-SLE.
Hopefully a better understanding of the involved mechanisms will lead to the development of more rational therapy for the many manifestations of CNS-SLE.

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Today was my doctors visit. To start off, I had to have fasting bloodwork. I hate when that happens. I am not hungry until I hear that I cannot eat at a certain time. All of a sudden, I am ravenous. It is a mind trick, since my tummy does not need it but my mind is telling it that it does. Anyhoo, got the bloodwork done and we then discussed a few of the issues I am dealing with in regards to the flare I am in.

The first issue is my over/under sleeping. As many of you know I typically suffer from insomnia several times a week. When I am in pain, like now, it happens more often. Cruel joke, but that is what happens. On the other hand, I can also sleep around the clock at times as well. It is a cruel irony that when I need to function and would like to have that insomnia, I am usually in sleep mode and vice versa. It is to the point my hubs wanted me to mention it to the doctor.

You see, he is concerned that I am not normal and something is wrong. Hmmmm, guess what? I am not normal and something is wrong…I have lupus! After discussing this with doctor, I realized that the feelings of being wierd are really pretty normal for lupies. This whole sleep/not sleeping thing is typical for us lupies. It is not normal per se, as far as normal people go, but it is indeed quite normal for those of us with lupus. I knew this all along, but hubs would not shut up about it until I asked the doctor. So, I am a “normal” lupie. Not a “normal” person but a “normal” lupie.

I sometimes think others forget that I have lupus and expect things out of me that I cannot provide. I wish I had support for these issues, but it seems that lately they have been swept under the rug and “forgotten” and it has certainly not helped me at all. You see, when I need rest, it means I need rest. If I do not rest, then I will pay for it. If I rest, then the chances are that on the other side of the rest, I will feel better, not necessarily fully productive, but better.

I am also suffering from depression as well. When I bottle up these feelings of inadequacy and inability to function “normally” it makes me sicker, which makes me more depressed, which makes me sicker and so on. A vicious cycle gets set into motion and in the end, I pay a heavy price for it.

That being said, I have resolved to stand up for myself more and take frequent rest breaks if needed and to the devil with those who do not or will not understand. I have to look out for my health and since it seems at times I am the only one who is doing that, it is imperative that I stand up to those who belittle me or make me feel useless. I am striking a blow for others out there who deal with this as well. If I can do this, so can you! We deserve to be treated with dignity and respect. I am not the only adult int his household who can do the things I do, so when I can’t, then I will get help.

In the end, this journey is really getting me down. However, I am resolving this one issue once and for all. I cannot and will not be made to feel unworthy because I am not “normal”. I am sick, with a chronic incurable disease, and if you were ill, then you would be treated with dignity and respect. That is all I want too.

Okay, I am getting off my soapbox now and will move forward. This blog is such a great thing because it allows me to vent these feelings and helps to not internalize them more so that I get sicker. Thanks for all the support! I truly appreciate each and every one of you!