Hi, I'm feeling a little alone in the world right now! I suffer from both Lupus and MS and have not come accross anybody else in the same position, neither have any of my Doctors. Is there anybody out there in the same position? :sad:
I personally haven't heard of anyone who has both We do have some members here who were initially diagnosed with MS and that diagnosis was then changed to SLE. In some types of lupus (notably NPSLE or CNS lupus as it was called) there are many similarities between the two. Also APS (anti-phospholipid syndrome or Hughe's syndrome) can have common points with it.
I am presuming, if you have such a diagnosis, that you already see a specialised neuro and rheumy?
I found this on the net - It looks pretty "heavy" and technical but may be of some interest.
Hi and welcome to the site. It is a great place for info and support. I was diagnosed with clinical MS, I now Have a lupus and hughes diagnosis. I did think that there were a couple of other posters with both illnesses. I know it is rare. Maybe I am wrong, I do get confused!\:hehe:
I hope someone makes contact with you. Either way there are a few of us on here who have MS type symptoms with our lupus.
Initially I was thought to have MS but it turned out to be Lupus with CNS involvement. My daughter does have an aunt through marriage that does have both Lupus and MS though. It is rare but you are not alone.
In the ten years or so that I have been reading lupus forums I have only met one person who definitely had both MS and SLE, diagnosed by an MS specialist neurologist and a lupus specialist rheumatologist. I would say I have heard of at least a couple of dozen who were suspected or actually diagnosed with MS that turned out to be SLE with CNS vasculitis, or APS the blood clotting condition already mentioned.
Sometimes a short trial of a blood thinner is used to see if there is any improvement in the MS type symptoms. I have known at least two very severely affected people with an MS diagnosis whose lives improved dramatically when their APS was diagnosed and treated correctly. Some people suffer from certain drugs used to treat MS which are not used in lupus and might make the lupus worse.
Just wanted to welcome you here and I hope you enjoy the site
I was a strong suspect for an MS diagnosis for a while but I was eventually diagnosed with Lupus with CNS Vasculitis and and Sjogren's thrown in to boot after lots of extensive testing and observation :wink2:
Hi and welcome to the site. I can not say that I have not heard of anyone having both but I thought I was alone to untill here. I am sure that there is someone in the world with both, you just have not found them yet. It is like search for your sole mate, your look alike, only this is your disease alike LOL, Oh I seen a smile come across that face.
I know it hard to smile with things going on like we do have but it does take less effort to smile them to cry. It is also much prettier to see a smile then a tear. I am sure that you could use some support and that is what everyone here is best at (this is from first hand experience that I tell you that).
I hope that you find what you are looking for and that you find the site helpful and supportive as I did and still do. I hope that you are well and doing well also.
I was diagnosed with MS and carried that dx for over 3 years until my blood work finally starting painting a clear picture for me and showed APS, which can be a great mimicker of MS. Have you ever been tested for APS and if not you may want to chat with your doctor about this.
I am sorry your dealing with both of these but sure hope that maybe it is a mistake, similar to what happened to me. I hope you find support here and join us in the chat room sometime.
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