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adl011
04-01-2011, 09:56 AM
Hey guys, I read some of the other posts on here about this topic, but couldn't find anything definitive. So I thought id start a new post. I've been having a lot of neural involvement in this flare, and my gp asked if I have ever been tested for ms. I haven't, but my father has ms. I haven't seen or heard from him since I was in my early tens, so I don't know much about him or his progression. A lot of my new symptoms fit with ms, such as the foot drop thing, memory stuff, and loads of others, but what im really wondering is how to tell the difference between cbs lupus and ms. I go to the neuro/rheum on may 17th, but that's a long time to wait, and I didn't think to ask the gp while I was there. What do you guys think/know on this.topic? I know lupus can attack anything, so its very possible to have neural involvement, but at what point should I ask myself could this be something different than" just my lupus"?

Thanks, and God bless,

Amanda

SandyR
04-01-2011, 11:14 AM
I did a little Google search on this and it's hard to answer you questions exactly but it seems the main way the drs can tell the difference between MS and Lupus outside of blood work and disease-specific symptoms is through the MRI. It seems the MRI is "normal" with Lupus and "abnormal" with MS. That said - I know for a fact that at least one other AI disease (Bechet's) can also look like MS on an initial MRI since my aunt was diagnosed with MS 22 yrs ago and just got a revised diagnosis of Bechet's this year.

SandyR
04-01-2011, 11:21 AM
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/index.aspx
Here's the breakdown of how to diagnose MS

http://www.lupus.org/webmodules/webarticlesnet/templates/new_community.aspx?articleid=2536&zoneid=91
cns & lupus chat on LFA site from a dr's perspective

rob
04-01-2011, 11:27 AM
adl011,

I wrote a post about this subject. Let me do some searching to see if I can find it and give you a link.

Rob

adl011
04-01-2011, 11:48 AM
Sandy, those links were helpful. I guess the only real way to distinguish is mri. I was kinda hoping that wasn't the case bc they are expensive, but since my father has ms and im having lots of symptoms, it'll probably be best to get the test. Is it normal for lupus flares to get worse and new and escalating symptoms with eaxh flare?

tgal
04-01-2011, 12:19 PM
Rob can correct me if I am wrong but I believe that even after having a diagnosis doctors don't ofen know where one begins and the other one ends.

I have Lupus with CNS involvement and I was tested for MS. The first two MRIs showed them white matter that seemed to be growing so I was sent for a lumbar puncture and a follow-up MRI. When I went for the 3rd MRI and the lumbar puncture all the spots were gone and the test was negative (thankfully). What I have learned by reading and also by really listening to Rob since he has both Lupus and Lupus with CNS. Often times the doctor's don't even know where one starts and the other one ends. Sadly when you have an autoimmune disorder you find out that many of them overlap so having 1 could lead to having 30 (not really 30 but you get the picture :) )

Thankfully I don't have MS but you would not know that by looking at me today. Typing this email is very hard because my fingers are jumping really badly as is my right arm. Rob can correct me if I am wrong but finding out I didn't have MS really didn't change anything. We talk a lot about our bodies not being our own and when their is CNS involvement or MS it is very true. My brain and my body seem to have a brain of their own LOL. I know you are nervous about the test but try not to worry. Honestly some of the meds used for CNS Lupus are used for MS. Whatever answers come your way just remember that we are here for you

tgal
04-01-2011, 12:28 PM
I have to comment on thsi because there seems to be some confusion about autoimmune disease. You very well may have MS since your father has it but that is also what left you open to all the autoimmune diseases. My grandmother has RA but that is still a contributing factor to my having Lupus and the range of smaller issues. Any autoimmune disease in the family leaves you open to ANY autoimmune issues not just the one that is in your family. I am not saying that two family members can't have the same disease I am simply saying that having a person with one disease makes it more possible to have ANY disease, not just the same disease.

(I really hope that made sense. I bad fog today)

rob
04-01-2011, 12:51 PM
adl011,

I can't seem to find my old post, but the jist of it was that there are distinct patterns of lesions in the white matter of the brain on an MRI image that happen with MS, but do not occur with Lupus. And there is demyelinization of certain nerve fibers that also does not occur with Lupus, even CNS Lupus.

Myelin is the sheath that insulates nerves, much like an electric wire. In MS that insulation breaks down, and like two uninsulated wires, when two nerves touch, they short out, causing the neurological problems associated with MS. There are definite differences in the MS diagnosis versus the SLE diagnosis. Although the difference between the two is pretty clear from the diagnostic standpoint, from the treatment standpoint, if you have both, it gets really complicated. Overlapping autoimmune disorders are difficult to treat.

Rob

tgal
04-01-2011, 12:54 PM
OK Rob.. here is my question

I know that there are differences in the diagnosis of MS and SLE but once you have them are they really that different?

rob
04-01-2011, 01:10 PM
OK Rob.. here is my question

I know that there are differences in the diagnosis of MS and SLE but once you have them are they really that different?

In my case, no, they are not that different. From the standpoint of having to live with multiple autoimmune disorders, I've found that having more than one isn't that much harder than having only one. From a treatment standpoint, a positive aspect is that some meds/treatments for MS and SLE overlap each other and can have beneficial effects for both diseases.

Rob

ETA-Part of this may be that after all of the losses and hell that came with the SLE diagnosis, going through yet another diagnosis was like pfft, whatever. The MS diagnosis was not the overwhelming shock that the SLE diagnosis was.

adl011
04-01-2011, 01:15 PM
My brain is really foggy today, but I think what you guys are saying is the main difference is in diagnostics but not necessity in treatment. The only treatment I've ever had for neuro issues was antiepileptic drugs for my seizures and some twitching in my hands, but since I didn't have insurance, most of my symptoms went unreported and untreated, but honestly I don't really care what's causing it as long as the treatment is the same and gives me some relief. Thanks for talking with me! :)

Yes, my SLE treatment regimen is not that different from my MS treatment, and some of the meds can have beneficial effects on both diseases.

BTW, I'm foggy too today!

tgal
04-01-2011, 01:27 PM
My brain is really foggy today, but I think what you guys are saying is the main difference is in diagnostics but not necessity in treatment. The only treatment I've ever had for neuro issues was antiepileptic drugs for my seizures and some twitching in my hands, but since I didn't have insurance, most of my symptoms went unreported and untreated, but honestly I don't really care what's causing it as long as the treatment is the same and gives me some relief. Thanks for talking with me! :)

Oh I completely understand where your head is. There was a period of time when not only did I have no insurance but I had no name for it. I didn't really care what they called it if they would just fix it for me! Then, as I fought with SS for so long I just wanted a NAME so everyone else would figure out what I already knew.

Rob, that for the explaination. That is what I had understood you to say but thanks for the clarification!

rob
04-01-2011, 01:28 PM
Adl011,

I just responded to your question, but I accidentally put my response in the same box as your post/question. Just look in your post (post #11), and you'll see it. This is the second time I've done this today. I'm thinking I should stop before I really screw something up. The connection between my brain and fingers isn't that good today.

Rob

adl011
04-01-2011, 01:40 PM
We're gonna have to start a foggy friday club. Everyone who's foggy on friday just come online and we'll all entertain each other with our brain mishaps.

Rob, I totally was trying to figure out how I had copied your message into mine, then when I read that you posted again pointing it out, I went back to read it again and totally thought I had written it and I was trying to figure out why I would type that I have ms. I think im gonna go get some laughs by reading the brain fog thread again. Good thing about brain fog, you don't always remember what you've already read, so its funny all over again. :)

rob
04-01-2011, 01:45 PM
We're gonna have to start a foggy friday club. Everyone who's foggy on friday just come online and we'll all entertain each other with our brain mishaps.

Rob, I totally was trying to figure out how I had copied your message into mine, then when I read that you posted again pointing it out, I went back to read it again and totally thought I had written it and I was trying to figure out why I would type that I have ms. I think im gonna go get some laughs by reading the brain fog thread again. Good thing about brain fog, you don't always remember what you've already read, so its funny all over again. :)

You know you have brainfog when you're a moderator and you forget how to post a response. Blah, what a day. I can't think to save my life today.

tgal
04-01-2011, 01:45 PM
well put me into the foggy friday group! Nothing is working like it should!

SandyR
04-01-2011, 02:00 PM
adl011,

I wrote a post about this subject. Let me do some searching to see if I can find it and give you a link.

Rob

http://forum.wehavelupus.com/showthread.php?8776-MS-question&highlight=myelin

is this the one you were looking for???

SandyR
04-01-2011, 02:07 PM
adl011,

I can't seem to find my old post, but the jist of it was that there are distinct patterns of lesions in the white matter of the brain on an MRI image that happen with MS, but do not occur with Lupus. And there is demyelinization of certain nerve fibers that also does not occur with Lupus, even CNS Lupus.

Myelin is the sheath that insulates nerves, much like an electric wire. In MS that insulation breaks down, and like two uninsulated wires, when two nerves touch, they short out, causing the neurological problems associated with MS. There are definite differences in the MS diagnosis versus the SLE diagnosis. Although the difference between the two is pretty clear from the diagnostic standpoint, from the treatment standpoint, if you have both, it gets really complicated. Overlapping autoimmune disorders are difficult to treat.

Rob

Some more info abotu demylenation and diseases that can cause it

http://hmb300neurowiki.intodit.com/page/cns-demyelinating-autoimmune-disorders-2
http://ctd.mdibl.org/detail.go?type=disease&db=MESH&acc=D020278
http://spinwarp.ucsd.edu/NeuroWeb/Text/br-840.htm

Nonna
04-01-2011, 04:19 PM
Please include me in the foggy friday club

rob
04-01-2011, 04:50 PM
http://forum.wehavelupus.com/showthread.php?8776-MS-question&highlight=myelin

is this the one you were looking for???

That's it. Have I told you lately how awesome you are?

Thanks Sandy!

steve.b
04-01-2011, 07:06 PM
looks like sandy cannot join the foggy friday club.. she is tooooooooooooo switched on.

im in it though.

adl011
04-01-2011, 08:58 PM
Sandy was definitely on the ball today. I guess she'll have to be left out of the foggy friday club, or she could help us remember why we have the club in the first place when we forget. :)

On a serious note, a big thanks to you sandy for that post. It helped me a lot. I have been debating whether or not to even ask about ms (if the dr didn't mention it) bc do I really need another diagnosis, and after the post I realized it'd be nice just to know what to call this new manifestation, and I am in the age group for onset. I don't think id have a problem with another diagnosis really. I just want meds to help me feel more" "normal" again. Even in good times I have some symptoms, as many of us do, but when I'm having a flare, like this one, which is the worst ever, I'm in so much pain and now these neuro symptoms, I almost can't function. I called today, thanks to advice from some of you glorious people, and got on the cancellation list, so hopefully I can get in before may 17th to get to the dr. Please be praying they have a cancellation soon! You guys are great! You really help me stay in high spirits through all this madness that is my life.

steve.b
04-02-2011, 04:07 AM
you have to love this lupy family.

Saysusie
04-02-2011, 12:14 PM
The Foggy Friday Club...oooh pick me, pick me, pick me!!!

I am accepting members for the Foggy Sat, Sun, Mon, Tues, Wed, & Thurs club as well!!


Peace and Blessings
Namaste
Saysusie

tgal
04-02-2011, 02:29 PM
I am joing those too Carlotta! LOL

magistramarla
04-02-2011, 08:53 PM
I'm just now joining this thread because I was AWOL on Friday.
Here's something else to think about - it seems that Sjogren's can also mimic MS. I've had the MRI (normal) and the lumbar punch (also normal).
I've read lots about Sjogren's mimicing MS, but it is impossible to convince the neuro or the rheumy of that.
Good luck to you.
Hugs,
Marla

SandyR
04-06-2011, 07:41 AM
That's it. Have I told you lately how awesome you are?

Thanks Sandy!

I'm not sure if you did or not but you are always welcome to tell me again and again. Flattery will get you everywhere. *smile*

SandyR
04-06-2011, 07:42 AM
looks like sandy cannot join the foggy friday club.. she is tooooooooooooo switched on.

im in it though.

I'm definitely more of a Monday Fog person. I'm so excited about Fridays being the weekend that I tend to be a little more focused.

SandyR
04-06-2011, 07:44 AM
The Foggy Friday Club...oooh pick me, pick me, pick me!!!

I am accepting members for the Foggy Sat, Sun, Mon, Tues, Wed, & Thurs club as well!!


Peace and Blessings
Namaste
Saysusie


Sign me up for Foggy Mondays. I can be the secretary and take minutes....but don't be upset if I forget that we have a meeting that day. *rotfl*

pisces_music_girl
04-06-2011, 01:28 PM
Dr. Mad Professor, my neurologist, believes that I may have either MS or Lupus. He sent me for an MRI where it was revealed I had "bright spots" in both the grey and white matter, which led him to say to me that "This could be MS, but we don't know". He looked at my bloodwork results and said "You have indicators of Lupus." So then I got sent for another round of tests I just finished with- follow up bloodwork and an LP.

My understanding is the only way to difinitvely separate Lupus from MS is through the results of your LP. My LP was an "MS Panel" (I have no idea what tha means but I assumed they were looking for MS). I'd suggest, yeah, to go for that MRI. The brain is a funny thing, it can cause a lot of symptoms. And I'd ask the neuro about the possibility of an LP.

Hang in there.

zoe5710
04-13-2011, 02:30 PM
Hello! I just found your forum and wanted to post my 2 cents on this topic because it reminds me of what I've been going through. I don't actually have a diagnosis of lupus yet, but my rheumatologist feels that it is the most likely culprit for what has been causing my symptoms. However, before I was seen by specialists (neurologist and rheumatologist), my family doctor (and the other dr's in her clinic who I saw) felt CERTAIN that I had MS. I read all about it and nearly all of the symptoms I was experiencing could be attributed to MS.

The only thing that didn't make sense was that my symptoms come and go from hour to hour or day to day. A doctor explained to me that in MS when you have a flare demyelination occurs and you have a relatively fast onset of symptoms. As you go into remission (either on your own or after being treated with steroids) the nerves can recover either partially or fully. So the symptoms typically come on quickly, then last for a period of time (depending on whether you receive steroid therapy, it can be days, weeks, or months) and slowly go away as the flare ends. At least this was how it was explained to me. It was strange that my neurological symptoms were transient and this made the neurologist say that it was unlikely to be MS. I had an MRI of my brain/spine that was normal and that confirmed that MS was not causing my issues.

Blood tests showed that I had a positive ANA (1:640) but I haven't tested positive for any specific antibodies yet and I don't meet the criteria for a lupus diagnosis fully. I have heard that some people with MS have a positive ANA.

My problems with the nervous system are dizziness, tingling, numbness, and other strange sensations in various parts of my body, a mild tremor in my hands (which resolved after a few months of being there intermittently), some bladder/bowel dysfunction (fun!), involuntary clenching of muscles (also seems to have stopped recently), and temporary cognitive problems like forgetting words and having trouble understanding speech (fortunately brief and temporary episodes).

You might also consider a blood test for Lyme Disease. I know that many people who don't even remember a tick bite attribute their CNS symptoms to Lyme. My neurologist said it was a bit of a controversial issue, but worth checking.

My rheumatologist is investigating whether I may have vasculitis as well. I have vasomotor dysfunction (blood vessels spasm and constrict OR dilate and can't constrict) which he said was "like Raynaud's but not exactly the same" (?!) This may be happening because inflammation is damaging the vessels. I mention this because it can affect vessels anywhere in the body, including the brain and spinal column, and that can cause CNS symptoms. It's hard to diagnose vasculitis apparently.

Good luck!

Zoe

tgal
04-13-2011, 03:08 PM
Hi again Zoe! I want to give you a bit o information that you may or may not have heard. Once someone has an autoimmune disease it is like they are a magnet for others. AI diseases are so close in many ways that they tend to be what we call "overlapping diseases". Almost all of your symptoms could be from different AI disease which could make since in the overlapping case.

What I am trying to say is that you may not be trying to pin it down to 1 disease. It may be that your symptoms are from several AI diseases. Just something to think about

SandyR
04-15-2011, 01:20 PM
Here's a list of differential diagnosises that resemble MS (http://library.med.utah.edu/kw/ms/dd.html)

I could tell you that I have been diagnosed with the 7th disease down and my aunt (who was previously diagnosed with MS for 22yrs) just got diagnosed with the 6th item down. Both Lyme's and Lupus are also listed.