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Hi everyone I am 45 and nobody has known what is wrong with me for the last 20 years. Always had rash on my feet at period times and then it disappears. A Dr is doing a test for Lupus currently but wondered whether anybody has had involuntary movements due to the lupus. would be grateful to say whether they had.
 

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Hi and welcome!


Involuntary movements can be caused by many things! If youre being investigated for Lupus I would look at the criteria for it! Perhaps there are other symptoms that you have had at some time in your life.
 

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I have always had Reyaulds last year had loss of hair but dizziness, hemiparesis lots of involuntary movements but also a problem with my eyes and sinuses including nose bleeds. Have lost the partial use of my ankle acquired eczema on my head. migraines and trouble thinking. It has taken me over a year to even feel ok and have had to stop driving due to the dizziness. The fatigue at its worst last year i was awake for approx 6 hours a day and lasted for weeks. Does anyone one have sharp severe pains in their heads when the flares go off?
 

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Welcome to the forum Bessie
I am sorry to hear of all your problems. As you may know, lupus and lupus related disorders can present with a wide variety of symptoms some less common than others. Movement disorders ( dystonia) of various sorts and hemiparesis can be associated with lupus. There are a few people here who do suffer from these symptoms and I am sure they will be along soon to give you their stories.
I am sure too that there are numerous differential diagnoses for such symptoms.

The whole topic is quite complicated. It has to do with what is called Neuro-Pyschiatric lupus (NPLE) formerly known as CNS ( Central Nervous System) lupus. Such symptoms might also be related to a blood clotting condition called antiphospholipid syndrome, APS, which can accompany lupus or be an independent primary condition.

It is certainly worth exploring the lupus /APS possibility. There is no single blood test for lupus. The one GPs usually do is called the ANA test which is very often found in lupus but is not in any way specific for lupus and isn't always found. It isn't relevant in diagnosing APS. Find out what test he did and keep a record of all tests and their results

I suggest you read the articles about symptoms signs tests and diagnosis on the information section of this site as well as the criteria lists pinned at the top of Not Yet Diagnosed sections here. You might see other symptoms that you have also experienced. The hair loss, Raynauds, headaches and thinking problems could well be associated.

You probably need to see an experienced lupus specialist rheumatologist who might well refer to a Neurologist for more specialised tests and investigations.


Bye for now :)
Clare
 

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Hi Bessie,

Welcome to the forum.

The first involuntary movement I had was restless leg. Since it is also found in the general population I didn't think much about it until it also started in my arms. After having damage to the central nervous system I developed an essential tremor, ataxia, myoclonus and spasticity. All of these movement disorders can be found in diseases other than Lupus also.

I hope you are able to find an answer for your symptoms.

Take care,
Lazylegs
 

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Hi there and welcome,

You have been given some good advice about seeing what your doctor has already tested for and also to have a look at the criteria used to help diagnose lupus (in case you have some other symptoms besides the ones you have mentioned).

I have lupus associated dystonia and I've also had lupus associated brain vasculitis. However in order to diagnose them I went through exhaustive testing and ruling out a lot of other things that may have caused them. There are lots of other things that can cause them believe me :rolleyes:

The sharp pains in your head? Have you seen a Neurologist and what testing and other investigations have been done regards that? Once again there are other causes but it was one of my early symptoms of vasculitis. Lots more came later though.

I hope you get to the bottom of it, working in partnership with a good doctor and becoming well informed yourself is essential. Some knowledge is a good thing, at least that way you can tell if you are getting adequate investigation to uncover the reason for these things.

love
Lily
 

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I do not know that I can add to what the others have said here.

You have been given good advice.

Let us know how you make out moving forward.

Good luck and come join us in the chat room sometime.:wink2:
 

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I really appreciate the replies and the advice that has been given. The Dr I am seeing is a neurologist. Since last April I have had what they call neutrophilia. The cardiolipid test a couple of weeks ago was higher than it should have been and I am to be retested in 12 weeks time. I have also just had an LP which messed up my system quite badly and I was hoping that whatever this is wasn't going to start up again as I have only started to feel reasonable again.
 

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Sounds like they are checking a few possibilities which is good :)

More often than not people with Lupus have low white cell counts, not raised. It's usually the Lymphocytes.

It will be interesting to see how your next cardiolipin test comes back, I guess you have checked out information on Hughes syndrome aka antiphospholipid syndrome? That could certainly show symptoms such as you have had. Let us know how it goes. Hughes syndrome can be present on it's own or alongside Lupus.

Have you had the results of your LP yet? Were they checking for meningitis or other infections?

love
Lily
 

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Involuntary movement

Hi bessie,

I have a combination of tremors (not possible, according to a neurologist). Sometimes it's an intention tremor and sometimes it's a parkinsonian tremor. It can be in one hand for a few minutes, or all day, or both hands, or my legs, or all of them, or my jaw.It is made worse by coffee, but unaffected by alcohol. I also get involuntary jerking. There is no sign of anything at this stage on brain scan, but my rheumatologist is convinced it is caused by Lupus. It responds to cortisone in very high does. Obviously that isn't proof, just my rheumatologists opinion.

Good luck!

Rose
 

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Hi Bessie,

Sorry to hear you are unwell,
Just thought id say that i also have been diagnosed with dystonia in my neck that flares up from time to time and i also suffer with myoclonic twitches which cause my whole body to jump again these flare up and then dissapear randomly,

Hope you get a diagnosis soon and can start some medication to help you feel better,
Take care x x x x x
 

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bessie,
Hi and welcome to the site. I had a sleep study done twice and both time they have in the report "noted invol. body movement in sleep and wake states". What does this mean I am not sure. I have always had what I call muscle spazs. The doctors have never really said much about it, but now that I think about it I never have said anything either. You have given me something to ask the doctor about thank you.

I will see what my doctor says and you see what yours says and we can compare notes if you want. I do hope that yours are not too bothersum. Other wise do hope you are feeling well and doing well.
 
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