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Well...it looks like the statistics are correct. There are not many of us out there. I am a very active 52 year old man.

After eight years of various nerve entrapment surgeries, unexplained falls, chiropractor visits for "pinched nerves," and living with unexplained chronic pain that seemed to come and go from no where, etc., I was recently diagnosed with CNS lupus.

Apparently it has been attacking my peripheral nerves for quite a while, often causing a strange stroke-like gait or a foot drop that causes me to fall (but only during flares). I was a runner/cyclist and always attributed the bouts to over training, pulled muscles, pinched nerves, etc.

At any rate, I'm on prednisone and hydrochlorquinine, and I seem to be improving a bit. What long strange trip it's been.

I've been having these flare ups for the past 8 years or so, and they've usually gone away on their own or after the nerve surgeries I didn't need (apparently because they gave me steroids to help heal without scar tissue).

This particular flare up started five months ago and by the time I got a diagnosis, I was just about in a walker. Crazy...anybody out there with anything like this?
 

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Welcome to the Lupus site Antaeus. :wavey:

Misdiagnosis and/or very late diagnosis is common among us and the stories told vary greatly. In my case I had so many checks on the symptoms list for Lupus that it couldn't be ignored as a possibility any more. My doc told me I came out positive on every lab test they ran (Including the Antiphospholipid antibodies test). It would have been so nice to have been tested before the 5 heart attacks and bypass surgery. :rolleyes: Although I don't know exactly what you're going through, I can relate to finally getting the right diagnosis.

For me it's SLE, APS, DLE, Fibro, and Hypothyroid. I hope things get much better for you very soon now. Some of our meds can take some time to build up to full strength in our systems. Even getting the right combo can take a while to get sorted out so try to be patient.

I won't even pretend I know very much about CNS except that it's one branch of Lupus. More knowledgeable members will post soon plus there is a ton of info to read on this site. You can search for posts about CNS and/or read up on this sites information section: http://www.uklupus.co.uk/

Good luck, take care and post back how things work out for you. :)


 

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Hi Antaeus and :welcome:

Sorry to hear about your diagnosis but pleased that you found us. There will be a few people here who can identify with some of what you have been through. CNS lupus does seem to take a fair while to tame once you have been diagnosed with it. It takes many different forms (there are around 19 different presentations ranging in severity) so whilst there may be others here who share some similarities with you, we each seem to have our own unique combo of symptoms. Either way you are amongst an elite group here :lol:

The Plaquenil will take a lot of months to reach it's full effectiveness, but the Pred is probably doing a good job of helping symptoms already. If things don't even out (and they may well do that eventually) then there are other meds they can try :)

I can identify with the strange gait and also the odd behaviour. They were two of my many symptoms. Things are much improved on that front for me now as long as I listen to my body and take care with sun exposure, take my meds etc. etc. etc . :wink2: I have a few other things which are being much more stubborn but we are working on solutions.

Take care and I hope you enjoy all the site has to offer.

love
Lily
 

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hi sorry this is all happening to you, its scarey hey, and when you have always kept fit then cant do thesame its horrible, i also have lots of cns

but now changed to cellcept still on pred and plaq which i have always been on, its helped, all the best to you

Lin x
 

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Welcome to the site - sorry for what brings you here of course.

I have plain old lupus... have not been diagnosed with CNS lupus. But I found it very interesting that you had multiple nerve entrapment surgeries that you didn't need. Before I was diagnosed I had two ulnar nerve surgeries done, but no steroids were given to aid in healing, and they helped me immensely. Sometimes lupus can cause swelling which can lead to nerve entrapments; & surgery can help but clearly it's better to treat the underlying problem (if it's known).

Anyways, take care and glad to have you here.
 

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Discussion Starter #7
Again, thanks all...and thanks for the warm welcome.

I am definitely in the learn and research mode at this point.
 

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Welcome Buddy .... don't have what you have going on , but on the same sort of trip , and it ain't fun.
Hope you get some relief ... and keep on smiling.
 
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