Lupus Support - cns lupus cloud

Author

cns lupus cloud

Lassy Lass

2004-12-16, 9:24 am

I have questions about the cns lupus also. I was referred to a neuro
when they found two 7cm brain lesions. My regular doc and also my
rhummey said ms was a possibility my ct scan did suggest ms. Some of my
other symptoms was/is balance, forget fullness , body like tremors,
shakey ness , <ex> holding coffee or eating. Blank stare. When I did
finally go see neuro I mentioned the lesions and asked if ms was a
possibility with out even looking at the ct scan he said oh no you don't
have ms, then I did suggested cns lupus and he said the same thing, I
didn't have it. I was never test for ms or cns lupus.

My regular is hoping to get me into a new neuro down is uc davis medical
center, I am hoping a much kinder one.

Have they done those eyes and hands test on you? The kind were they say
follow there finger and have you stand up and look at the ceiling and
expect you to not fall over? Please keep us posted ((((((hugs))))))
Melody

herbwormwood

2004-12-16, 9:24 am

just a word on the MS aspect.
I have CNS lupus and Hughes/antiphospholipid syndrome.
I was in hospital under the care of a neurologist for a week after my
rheumatologist decided I needed specialist tests. I had lupus for about 18
years then before then.
While examining me and some MRI scans the neurologist told his students my
brain problems were similar to MS.
Later he explained to me he didn't mean I had MS, but that the brain effects
were similar.
A friend of mine has MS and she was tested for lupus, because her symptoms
were similar to CNS lupus.
But you can have CNS lupus without having MS, if this all makes sense. And
despite both being rather nasty, lupus responds better to treatment, as far
as I am aware.

I am on imuran and prednisolone for lupis, and warfarin and aspirin for the
hughes syndrome. A dangerous combination, I know, but it seems to work.

On T 9 Dec 2004 14:42:11 +0000, cloud wrote
(in article <7vZtd.88977$Oc.36345@tornado.tampabay.rr.com> ):
> Hey Melody,
>
> It's a "too hot and humid day" here is Sunny Floridaland. Would someone
> please wish me a small iceburger.
> You've asked a lot of questions and to honestly answer them, I am inclined
> to fall into great detail, but for the sake of the newsgroup I will try to
> keep it simple. Then we can go on from there.
> You have said you have two 7cm brain lesions. How were these lesions found
> in the first place ( i.e., why were they performing the ct scan )? My ct
> scan also did not rule out MS.
> In response to your question regarding your other symptoms: "... balance,
> forget fullness , body like tremors, shakey ness."
> Often times these symptoms can occur in autoimmune disease as a result of
> other possible illness(es), medication reaction or reactions between other
> medicines of which little, if any, research has been done, or sometimes they
> occur on their own with no know cause.
> In regard to balance, I too have horrible balance. My feet have grown over
> 2 sizes in 4 years. I wing-out when I walk and am quite slow in thought and
> actions. I am on over 20 prescribed medications, and quite a few of them
> show side-effects of dizziness or who knows what counter-actions with other
> medications can and do coexist. Is your balance affected by a sudden loss
> of sensation in limbs?
> I believe forgetfulness can also be a negative side-effect of some
> medications as I have been told. Other reasons for forgetfulness can be
> stress, fatigue along with being a symptom of other illnesses. I forgot what
> the other illnesses are. : )
> Tremors can be caused by drinking beverages with too much caffeine (coffee
> is meant to be spilt.. hahahha... I can not drink coffee... after too many
> years of drinking it, it make me sick and nauseous ). A host of other
> reasons.
> My tremors are caused by a disease known as "Essential Tremors." I have
> read that in the beginning stages, ET is like the opposite of Parkinson's
> Disease. Those with PD shake when they are inactive; those with ET shake
> when they are active.
> For instance, when I try and reach out for an item and secure it in my hand,
> my hand shakes, often causing disastor to many items. Hence, I have learned
> to keep my hands and objects close to my body when handling them, offering
> greater control.
> Katherine Hepburn had ET. ET can affect the head, hands and other areas.
> My hands were affected and then my chin became involved. Stress makes it
> worse.
> Just recently I have found out there are at least a couple varieties of
> brain lesions.
> Oh, and you had not mentioned your age. Often, MS is diagnosed in the years
> of young adulthood. There are those instances though when one reaches my
> antiquity that MS can be discovered. My beliefs are that MS is quite costly
> to diagnose and often times ins. companies disway testing but instead treat
> the symptoms instead of search for for other possible reasons as to what
> else could be causing such symtoms. I am not saying I believe this it the
> common routine but I am suggesting it is done more often then not.
> Why fix something if not broke and if it is broke, then why use copper
> plumbing when pvc will do the job.
> That sort of thingy.
> Sorry for the lengthy words.
> Happy Holidays!!
> Always,
> ..á «¬¬)) -:²:-
> ü.á« .á«¬¬))
> ((üü.á« ..á« cloud -:²:-
> -:²:- ((üü.á«*
>
>
>

cloud

2004-12-16, 9:24 am

Hey Melody,
Sorry I am so slow in posting back. I spent last weekend in a cardiac ward
while they held me for observation. Woke up 2:00am Friday morning with pain
in chest, in arms and nausea'd all to hell. Anyways, I am thinking it
rather routine that they drag everyone in for observation with chest pain
because seems everyone who was beside me, they held too. Guess it is, was
my age. Right now the breathing is bothering me. Think it is pluersey and
i need some breathing treatments. I am going to call the doctor.

As far as the neuro work up tests, yes, they did the finger test and touch
your nose. I do not do very well with it because of tremors but I am pretty
good. I sometimes think I need a bigger nose.

But there were many other tests they run. There is a whole neuro battery of
tests. Best thing to test for MS is the spinal fluid. Doc did my MRI
though and he said he did not see plaques. Plaques is what they look for.
Actually, you may just be stuck with what you have? Which if you ask me,
autoimmune disease sucks big time enough!

Am trying to remember everything i have. Lemme think. I am actually Mixed
Connective Tissue Disease (MCTD), which is an overlap of Lupus, Scleroderma
and Polymyositis. Generally, one disease out of the three prevails. Often
it is Scleroderma. Less often it is Polymyositis. I am mostly Lupus.

I also have RA (rheumatoid), OA of the Spine, Severe DDD, Hyspertension
(controlled), Hypothyroid (underactive thyroid), Diverticulosis, Raynaud's,
COPD/Asthma, Fibromyalgia, GERD, White Matter Micro-Vascular Disease (which
is really artereosclerosis of the brain. ya know how doctors like to fancy
up names so we don't know what in heck they're talking about!), Essential
Tremors, and a few other straggler disease or two which I tend to forget
about. I quit looking at my lists. My lists are not me. I am me and i am
an ornary cuss! LOL Just ask the dang diseases which try and take over.

I will pray for you that you do not have MS. My neice is having to give
herself interferon shots in the stomach and it is not fun!

--
Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

>I have questions about the cns lupus also. I was referred to a neuro
> when they found two 7cm brain lesions. My regular doc and also my
> rhummey said ms was a possibility my ct scan did suggest ms. Some of my
> other symptoms was/is balance, forget fullness , body like tremors,
> shakey ness , <ex> holding coffee or eating. Blank stare. When I did
> finally go see neuro I mentioned the lesions and asked if ms was a
> possibility with out even looking at the ct scan he said oh no you don't
> have ms, then I did suggested cns lupus and he said the same thing, I
> didn't have it. I was never test for ms or cns lupus.
>
> My regular is hoping to get me into a new neuro down is uc davis medical
> center, I am hoping a much kinder one.
>
> Have they done those eyes and hands test on you? The kind were they say
> follow there finger and have you stand up and look at the ceiling and
> expect you to not fall over? Please keep us posted ((((((hugs))))))
> Melody
>