Anybody here have MS AND Lupus?

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Regular Member

Date Joined Oct 2008
Total Posts : 261
   Posted 3/5/2009 5:45 PM (GMT -6)   
Hi im not diagnosed yet but have been battling symptoms for years but mostly since sept of last yr. I was just wondering if anyone here has ms and lupus and how you came to be diagnosed? Ive gone through blood tests but noticed I am very heat sensitive. Can this be lupus related or ms? Symptoms point to ms minus the rash and mouth ulcers :/ Id love to hear stories! Hope you all feel well. -Brit
*Wifey & Mommy*

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 3/5/2009 11:39 PM (GMT -6)   
We have had a member here with lupus and MS. I am not sure whether or not Lupus is heat sensitive. I am sure your rheumatologist could tell you if your heat sensitivity is from your lupus.

What tests have you had for MS and what were the results? You mentioned that you have had blood work. MS is not typically diagnosed using a blood test. You have blood work to rule out other infection, however it won't tell you if you have MS. Most of us diagnosed with MS have had an MRI, a lumbar puncture, evoked potentials, a thorough neurological exam. Usually neurologists are looking for lesions on the MRI, o-bands in your CSF from the lumbar puncture, irregular evoked potentials and irregular responses and reflexes to the neuro exam. There must be no other explanation for the results of those tests.

As I have said recently on another post, having an autoimmune disease indicates a susceptability to autoimmune diseases. It is not that uncommon to have more than one.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

New Member

Date Joined Apr 2009
Total Posts : 3
   Posted 4/25/2009 7:28 PM (GMT -6)   

I have MS and Lupus.  DX'd with MS in 1994, however symptoms subsided and it has been in remission since.  Started feeling awful after my son was born in 2000...feeling exhausted and achy all the time.  Plus my muscles and joints hurt quite a bit.  Attributed it to the MS and ignored it.  (Not smart!)  Finally just a few months ago I reluctantly made an appt with the neurologist who tested me for Lupus.  What I had been trying to ignore was not neurological at all.  Turns out I have both.  The blood tests he did were for Lupus, antiphospholipid syndrome, sjogrens, HIV, Lyme disease and a few others.  The ANA came back positive along with the anti-ds dna which was sky high.  Add those tests to the rash I get in the sun and mouth ulcers that have lingered for nearly a year and it was without a doubt Lupus.  So the neuro did an MRI which showed 25 lesions.  Then a spinal tap and there is some kind of MS marker they can find in the spinal fluid which was positive.  Also, Lupus that mimicks MS apparently shows up in the spinal fluid (white cell count and protiens I think, but don't quote me) and those were normal.  So the neuro and rheumy are certain I have both Lupus (SLE) and M.S.  Wow, what kind of luck do I have?  Well, I started Plaquenil and I feel pretty dang good so I am not complaining at all.  Considering what's wrong with my immune system I'm just peachy with feeling fatigued and achy compared to the alternatives.  Hope I helped!  Let us know how all your testing goes.


Regular Member

Date Joined Aug 2008
Total Posts : 271
   Posted 4/25/2009 9:34 PM (GMT -6)   
Hey Brit,

I have MS but just lately I have been following a diet that I know lupus people follow & I feel really good?! The diet is no legumes which includes soy, alfalfa, peas, beans, lentils, clover. I am also doing no nightshades (potatoes, tomatoes,capsicum, aubergine).

I have tried this because I have read that people with MS should avoid legumes but could never find why. Its only since I read about this diet for lupus avoiding all the legumes because they have a sort of amino acid called L canavarine which causes inflammation that I understood. Well, I thought MS is an inflammatory condition so I will give it a try & see if it helps me.

I believe that if it works for me I do it though, of course, I do not know for sure that the diet is what is making me feel better!????! turn
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream

New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/20/2013 2:21 PM (GMT -6)   
I have had relapsing/remitting MS for 21 years and now have been told I have Lupus. My body seems to be rejecting a multitude of foods, medicines, supplements, all of which I have eaten and taken for years.
My question is since I am already on an immune modulating medication for my MS, should I even take the chance of adding another medication that has been prescribed called Plaquenil? My body doesn't react well to new meds so I am afraid to even try this medication.
Anyone have any advice for me.
Even with MS I have always been a very positive person and have lived my life with great hope and expectation for the future. With this new diagnosis, I am having more trouble with staying positive.
I want to be the best I can be but do not want to make things worse.
I am on a very restricted diet but am hoping to be able to add new foods in the near future.
Please, if there is anyone out there that has experienced this, let me hear from you.
Thanks for listening,

New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/21/2013 10:59 AM (GMT -6)   
Hi, Misabee:
I have Ehlers-Danlos (joint hypermobility syndrome--not MS, but certainly causes the same extreme joint pain, fatigue, migraines, etc.) and as a result, am on several medications for pain management, CNS, and muscular issues.  I would not be overly concerned about adding Plaquenil to an already extensive medicinal routine.  Plaquenil, compared to my other medications, has been very mild in terms of effects and I know it does some good, even if it does not alleviate my pain to the extent that I would like.  It reduces my inflammation levels, which makes it worth it to me. 
Like you, I also notice that I am strongly effected by some medications; I either have increased joint pain or dizziness, or depression and anxiety. 
I still maintain an optimistic outlook because, over time, I have become accustomed to the pain and fatigue and have, to the best of my ability as an active 28 year old, tried to build my life around these "quirks" I have.  A pain level of 4 becomes the new 0, and as my pain has increased in the past year, I'm sad (and relieved) to say that a pain level of 6 may be the new 0.  It's not an answer I particularly like to remaining optimistic, but it's working for now. 
I may soon be looking into other ways to manage the inflammation, but for now, Plaquenil seems a good bet, with very few emotional or physical side effects.  It can be hard when you have two separate conditions that have medical treatments sometimes at odds.  Hope this helps.
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