Hi everyone -
I have had an array of symptoms over the past several years - a good portion of them neurological - and, like the rest of you, went unDxd for years. My symptoms include: disabling fatigue, muscle pain, joint pain, cognitive dysfunction, unexplained seizures, myoclonus, peripheral neuropathy, vision problems, among many others. These have ocuured soemtimes at the same time, somethimes some and not others, etc. My latest symptms are muscle rigidity in legs, drop foot, vertigo and severe numbness in legs that feel as if there is an elastic band at the top of my thighs. OK, so - last summer, I had an almost complete remission of symptoms - it was AMAZING!! I went and got a job again, life was good. Well, autumn came, and so did the symptoms (including the new ones I just listed). I was Dxd this May with SLE (lupus), after years of docs suspecting either lupus or MS. So, thank you God - limbo land is over. Hooray!
However, heres my dilemma - I have always felt as if my symptoms were more of the MS nature than the lupus nature, and still do. My last brain MRI showed mulitple lesions in semiovale, not "highly suggestive of demylating disease. Could indicate ischemic lesions" My MRI's before that showed: 1st one - brain atrophy not normal for age; and 2nd one: two tiny multifocal lesions. Thus, third one had multiple lesions. No contrast was done on third one. I stopped seeing my neuro after that, and have not seen a neuro since.
Should I pursue an MS Dx? I am currently being treated with prednisone (which helped the neuro symptoms RIGHT AWAY - though am back in a flare now), and plaquenil. THough lupus can affect the CNS, Im not sure thats what these symptoms represent. Any ideas? I would greatly appreciate anyones comments/suggestions.
Thank you in advance -
PS - This whole thing started when I was pregnant with my son, and at 8 mo. developed a very severe, rare virus that put me in respiotry failure/ARDS. I was put in a coma to heal, though they did not expect me to make it. But, here I am!! It was after this virus that symptoms - at first slowly, then more and more, began to take over my life. My neuro believed it was a post viral symndrome/chronic viral encephalitis, that then triggered an autoimmune response. He thought more lupus than MS. But, for years, rheumies would not consider lupus because of blood work being neg. As I mentioned above, that has changed. Sorry so long - Im still leaving out ALOT - but I think this is enough for you all to get the general idea. Also have bladder issues...
I look forward to any ideas you all may have - thank you again!
I want to welcome you and say hello. The weekends are fairly quiet here mostly, not as many folks around to respond. I'd like to mention that you do have symptoms that are similar to MS, but some aren't. BUT, that is the case for a lot of us. There are no two people exactly the same w/MS. It and it's always great to get more than one opinion.
I can't imagine why you have brain atrophy. How old are you if you don't mind me asking? More will respond, and I apoligize for being so brief but wanted to say hello before I run out the door this a.m.
Thank you for coming our way, hope you enjoy it here. This place is like family you'll find. And, have you read any health pages yet? They are located toward the top right corner of the site.
I just wanted to thank you for your welcoming comments and information as well. Yeah, kinda strange on the brain atrophy...my neuro never really explained what it meant. I just turned 41 last week, but that particular mri was done when I was appx 32/33...so, yeah, REALLY young for atrophy..Maybe that explains my absolute almost complete loss of memory...I cant remember most of my childhood, high school, college, my daughter being young...ALOT of things...I have little memories here and there...My friends and hubby have to constanly remind me of things that have happened in the past.
In any case, I am sure I do have lupus, as the signs and symptoms are so classic -and I have been officially Dxd by TWO docs. I jsut think, as you said, that if this was CNS lupus, I would be MUCH sicker - that condition is really really serious. But, Im just going to continue with my lupus treatment, and in the meantime, make an appt with a neuro to get a new MRI - it couldnt hurt, you know? I have a friend of mine in a lupus support group Im in that also has been Dxd with MS, and he really is sooo sick - the poor guy. That is NOT what I want for myself - in any way...
But, again, looking forward to talking with you , and thank yo uagain for your reply...
You are very welcome. I'm going to give your thread a little bump as it's sliding off the page, and I want you to meet the rest of us.
Where do you plan on lining up a Neuro? Anywhere particular in mind?
Lupus is tough. I don't have it, but did get some mighty similiar lupus symptoms w/a drug induced allergic reaction, my skin was looked like leather and all my joints swelled, I had no idea the depths of lupus. We really do need to get some others to comment on this brain finding though. I've not heard of lupus causing brain atrophy. Did you get MRIs on your spine?
I, too have lupus along with MS. It makes life rather difficult. I too seem to have more MS symptoms than lupus but the lupus complicates thing incredibly. I can't stand the cold because of the raynauds that goes along with the lupus. I can't go out in the heat because it makes me so sick (MS), then I can't stay out in the sun because of the lupus. That's just an example of the complications. I also have a rare ai kidney disease, so plaquenil reacts really weird on me. I, too was dx'd first with lupus, then MS. I also felt so relieved to know there was something wrong. Both my neuro and rheumie told me that the symptoms can cross over and be similar, while some are just flat out particular to each. For example, in the sun, I get the bright red rash - lupus. I am always getting muscle spasms in my legs, hands, and elsewhere along with burning in various parts of my body. I was told that's particular to the MS. But, then there are the headaches, both, mental confusion, both, pain, both. So, I would say, listen to your body. What tipped my doc to pursue MS was the eye pain and burning and numbness in my face.
I have been in limboland for over 5 months now, although this is a short time for this forum. My docs have all been saying MS, but all the tests are showing nothing. I am currently pregnant and my neuro was even more convinced of MS when I started to feel sooo much better during the pregnancy, which is consistant with MS. But around the 10th week of pregnancy symptoms slowly returned, along with new ones more along the lupus lines. At 15 weeks pregnant I had the worst flare up I have ever experienced. This one lasted 11 days and has left me feeling different. I went to see a new PCP to see if we had pursued Lupus at all, and she said that the blood work my neuro did, mainly the sedrate, would have shown if it was Lupus. This new doc thinks that there is no way it could be Lupus. My question is How long did it take Lupus to show up in your bloodwork? My grandmother has Lupus and her doc suspected it for 10 years before it showed up in her blood. I would rather not have either, but since I am pregnant I want them to pursue all avenues since I have heard of many complications during pregnancy with Lupus.
Hi there -
Sorry it took so long to get back to you...I have been dealing with a really bad flare (lupus not MS).
Willow - Im finding out that it is not completely UNcommon to have both. There are so many symptoms that you can say, "OK - is this lupus? or MS?" You did a great job of explaining how it is for you. I give you a lot of credit - having one is quite enough, thank you.
Mrs Turbo - I would have to know all of your symptoms to give you a better idea if this is lupus. The problem that docs are usually concerned with during pregnancy with lupus is having antiphospholid antibodies - which can cause clotting problems and, thus, problems with carrying the child.
With regards to antibodies showing up in the blood - it can take a LONG time. In addition to that, even if you HAD some blood work that showed possible lupus (there is no ONE test for lupus), that doesnt mean they would Dx you. All docs are different, and I know a TON of people who have all the indicatiors, and still arent Dxd. The average time for a lupus Dx is between 3 and 8 years...
There are some symptoms, however, that are pretty clear cut for lupus, and that is sun sensitivity (getting a rash after being in the sun), malar rash, and painful swelling joints. Most docs wont even CONSIDER lupus, unless you have these symptoms, even though you can have lupus without them. Its confusing and really frustrating for so many who go untreated. It took 8 years for my Dx, and I have had many of the 11 criteria for years...
OK this is an MS page, Im sorry for all the lupus talk. If you want to ask me anything further, feel free to PM me.
thanks for the replies -
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