Could someone have Lupus and MS?

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sunshinesyl
Regular Member


Date Joined Apr 2006
Total Posts : 169
   Posted 6/4/2008 12:36 PM (GMT -6)   
Hi, I usually post in Lupus section. 
Thankyou

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 6/4/2008 12:44 PM (GMT -6)   
Yes. Just because you have one autoimmune disease (lupus) you are not immune to others...or any other disease or disorder, for that matter. Some folks with a compromised immune system seem to develop others rather easily.

Just be sure that you've been diagnosed properly, and a doctor hasn't mistaken one for the other, some where along the way. (Like, you've always had MS, but somebody thought it was lupus...or vice versa...or it's not rheumatoid arthritis, which looks a lot like MS or lupus...or some other mistake...)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


sunshinesyl
Regular Member


Date Joined Apr 2006
Total Posts : 169
   Posted 6/4/2008 2:44 PM (GMT -6)   
Thanks for responding, here is a quick history of why I think I may have MS; In 1998, 2 weeks after birth of 4th child, I started working at a pizza place and was near the hot ovens all day, I couldn't stand the heat, after work while driving my eyes felt like I had sand in them daily. I only lasted there a mo. I was very heat sensitive and would be very tired.
Soon after, I was working 2 part-time jobs and would come home very tired too. At that time I didn't suspect any illness, my mom had Lupus too and maternal grandma had RA. throughout this period had ongoing stomach problems and they couldn't find reason for this. In 1999 DX w/mitral valve prolapse, On March 2002, I had Bronchitus and was off work for 1 mo, at the time I had better job in a cable co. It seems after that episode my health just got worse, I had just lost my mom in Jan 02', On Halloween I could not get out out of bed due to severe muscle weakness, my dear Fiance took my little ones trick or treating. I felt so bad I couldn't even sit up. In 2003, got married, symptoms were worse, I could barely walk, I tried not to show it at work, had trouble going up and down steps, muscle pain especially on arms. May 2006, no longer working, August 06', woke up rght arm I could not lift or move, when I tried it would hurt, this lasted 1 wk. was also having incontigence (sp). Left hip/leg hurts when I walk, still hurts and sometimes I limp, I've also had the vertigo all this time too, there r times when I get frm bed and have to hold on to the walls. In Jan 08', my left arm numb and could barley move only lasted 3 days, I started wkng part-time in 11/08', I couldn't believe how only wrkng 4-5 hours I was in so much pain, co-workers could see it and would tell ask if I was ok.
When I'd get off wrk and get out of car I could not straightned up my body to walk, I would call my HB to help me out of car then I needed to lay down for a few hrs. I think I've also experiences the "ms Hug" some of you have described a few times this year, as I was walking all of a sudden I had to stop and not move, I felt torso very heavylike, scared to take another step, this lasted 30seconds or so.
My whole left side is causing me more problems, I feel more numbness and my legs fall asleep after just sitting for 1/2 hr, so I have to constantly shake my legs, (its funny, my HB thinks I have to use Bathroom). Also, this yr, while at wrk, I extended my hand to give change to customer all of a sudden I felt frm neck to low back a feeling of being shocked, it was so quick I got very scared felt like if I moved I would stiffen up. One of the DR's I seen sad I should see a Neuro, but he didn't explain why.
Another new Rheumy said he didn't think it was Lupus, it was my 1st time seeing him, I didn't like him, he said everyone has back problems, he was terrible. I'm waitng to see another rheumy.
Should I tell new DR. what I think it may be? I have a kept journal and plan on taking w/me. There r other symptoms but can't rem. right now.
Sorry so long of a story, please let me know what you all think.
Thanks!!

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 6/4/2008 3:53 PM (GMT -6)   

I'm not real clear about your diagnosis..you HAVE been diagnosed with lupus? (Just because your mother had it doesn't necessarily mean that you have it!)

The mitral valve prolapse and bronchitis aren't related to someone having MS.

Your other symptoms do sound like what a lot of us with MS experience. But the only way you'll find out is if you go to a neurologist and get tested, as there are a lot of diseases and disorders, some of them quite treatable, that can cause many of the symptoms you're describing.

I wouldn't walk in, though, and declare "I think I have MS."  Rather you'd want to tell him about your lupus diagnosis, your family history of autoimmune diseases (mother with lupus, aunt with RA), tell him your medical history (the mitral valve prolapse)

and then tell him your symptoms.  Before you go in, you'll want to list the symptoms and try to remember when they first started, if they worsen (like you described in front of the pizza ovens, for example), if there are periods of the year when they're worse (some people seem to have flares in the spring; others in the fall, for example).

Sounds like you've seen a lot of different doctors.  I think it's really important that you find one doctor (this can be your regular family doctor; doesn't have to be a specialist) who can follow you over time -- someone you trust, who you can call and at least report new symptoms, if there isn't a need to actually go in to the doctor. Since you've seen a lot of different ones, it will be important for you to gather up all your medical records from the various doctors, put them in some sort of chronological order, and then take them with you to the neurologist.

Don't expect the neuro to necessarily be "friendly", or willing to hold your hand or "have a good bedside manner", though!  Many specialists, and neuros are sometimes notorious about this, don't really want to be personable with patients.  They see their job as to examine the patient, diagnose the condition(s), and refer the patient back to their primary care physician for follow-up and continuing treatment.  So if he's brusque, or impatient...try to separate his manner from his expertise, and if he seems to be working hard to diagnose your situation, he might be worth keeping until the diagnosis is reached -- and then you'd want to find a family physician, who IS trained in personable patient care! -- to follow-up treatment with you.

Good luck!

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 6/4/2008 6:55 PM (GMT -6)   
Wow sounds so much like my experience. I am currently testing for MS and have Lyme and it all started with walking Pneumonia it was like a trigger it seems.for Lyme ..Then the last birth 4 months ago sent me into a really bad place. Seems to be a pattern with auto-immune conditions.... (hormones) I have heard so many get unwell after a pregnancy..... Good luck keep searching. I know you can become discouraged when you feel so unwell.

Take care,

Carolyn

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/4/2008 7:01 PM (GMT -6)   
You get Lyme Disease from a tick bite..NOT from any other "trigger". A TICK bite. It's a bacterial infection, from a TICK that has the infection, and SPREADS it to you. Perhaps..and it's pure speculation...that PERHAPS having Lyme disease can open you up to autoimmune disorders. But only the "tick/Lyme fanatics" really hold that to be "true".

Perhaps, Carolyn, you had Lyme...misdiagnosed as "walking pneumonia". Or perhaps you ONLY had walking pneumonia, improperly treated. But you did not EVER have some disease that "triggered" Lyme disease. It is a separate and distinct disease caused by a tick bite, a bacterial infection caused by the TICK, not by some other disease!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 6/4/2008 10:24 PM (GMT -6)   
Enough from you uppitycats. Leave me alone. Deleted my own reply to save everyone the trouble... Thanks for the support.
"Whatever"
There really will be nothing left for anyone to read if the threads keep getting deleted. You cannot argue on your own. Do your own research or don't. At this point you have turned this into a 3 ring circus with your ranting. The whole fanatic thing is getting old....it is rude. No.... Good let me be a fanatic. At least I am an informed one.
Carolyn AKA Geriatric lyme fanatic

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3124
   Posted 6/4/2008 10:42 PM (GMT -6)   
Ok again, this has got to stop!!  This bickering ends now or yes I will delete this thread also.  I am sorry that that bothers you but I won't let this arguing ruin this board.  Then next step will be to forward this to administration and that can result in banning.  Please stop!! 

Gretchen       co-moderator MS board       diagnosed with MS July 2006


sunshinesyl
Regular Member


Date Joined Apr 2006
Total Posts : 169
   Posted 6/6/2008 11:33 AM (GMT -6)   
Thanks carolynvb, I feel like after I had my very 1st bout of Bronchitus ever, my body got worse. I was DX w/Lupus in 03'. I've had 3 DR's confirm it, one was a Rhuemy, Back then I had good ins. was seeing the same DRs, then I lost my job. Now currently on HMO plan, not happy w/it. The new Rheumy thought I didn't have Lupus, I'm also now thinking it may be MS, due to my symptoms.
like my arm in 2006, I could not move for a week, didn't have any ins. at that time. Now w/left arm not being able to move in beg. of this year.
Uppity- No I don't expect the DR to hold my hand, but I do expect them to listen and not make me cry, feel like I'm lying to them about my pain and leaving it up to me to decide what type of pain med I want, I feel they should decide.
Sorry I didn't mean to start a bickering thread.

carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 6/6/2008 1:44 PM (GMT -6)   
None of this is easy. Every day is a challenge that changes hour by hour. The last couple of years I went to about 17 different doctors for my initial diagnosis. Some where challenging to say the least. One told me I was basicaly a nut case the others just did not know and really could not be bothered to figure it out. There was so many parts of the puzzle and no one tried to put them together. Unfortunately, when you have researched to any degree the DR's then think you are a know it all trouble maker or something......No..... I was just a very sick person wondering if by the time they figured out what was wrong it would have been during my autopsy! Really that is how I felt. Pregnancy was excellent a huge shock but most symptoms went away and now here we go worst symptoms ever. Most debilitating ever. Fear again not knowing where it is going to end...what will I be left with ....Is it going to go at all or am I just going to get worse....so I really do understand how you are feeling. If you knew what was going on you could make adjustments and deal with it to some degree. Whatever the future holds sunshinesyl we will be fine :) We have to. Too many people need us and the good thing is every day is diferent. Different symptoms, different hope, advances in medicine.
I know it is frustrating but hang in there friend...

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 6/6/2008 2:11 PM (GMT -6)   
Hey sunshinesyl

I'm pretty late jumping in here, but just wanted to let u know that YES u can and some do have lupus and ms together. A very very dear friend of mine does and has for some time. As Uppity mentioned, auto immune diseases very commonly happen together. Like Carolyn said, hang in there friend and get to the answers. U are u'r own best advocate and u simply must push for an answer if u are going to get one. Take care and keep at those docs.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


USAFVET
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/9/2009 4:28 AM (GMT -6)   
Thank you Uppity no one has ever given me an answer on that question smurf

COrox24
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/26/2009 4:13 PM (GMT -6)   
I have Lupus and MS. I have a neurologist and a rheumatologist who agree and I have undergone plenty of tests. I was told by my neuro that the spinal tap would really be the clincher to determine if it was one or the other, or both. Of course that's in conjunction with the blood work and the MRI. (That's what they said...I'm not a doctor!) To quote my neurologist: "yes, you can have both....it's rare but it happens."

~Christy

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/29/2009 3:50 AM (GMT -6)   
Hi all,

I recently cut all legumes from my diet (as recommended for Lupus because they contain an amino acid that exacabates inflammation) also all nightshade (tomatoes, capsicum, potatoes etc) for the same reason. I thought if they worsen inflammation in one auto immune disease why wouldnt they affect all??? Anyway I feel terrific. Have lots of energy and NO fatigue. I just do not believe that all auto immune diseases are in separate boxes but rather along a continum.

I believe it is necessary to do my own research. Perhaps I have not had very good experience with doctors - recently saw my neuro & said I had lost most of my taste & smell and he said "that not MS". "Strange" I retorted "I found it listed on the MS website". One embarrassed dr! They do not & can not know it all.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Love is a many splendoured thing


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3124
   Posted 4/29/2009 8:53 AM (GMT -6)   

How can your doc say that?  Is taste and smell NOT regulated by the brain?  Clearly you have damage there. Sigh!!! Popsie, come see my doctor!!  You deserve a good, kind neuro that will listen to you.  Don't you hate when you are treated like an idiot?  That so does not work for me!!

I could NEVER give up my tomatoes!!  And I love a hot pepper!  I don't have any love for potatoes except sweet.  I have read that tomotoes are very cooling to your immune system.  I eat them constantly!  I try very hard to eat the "rainbow"  as that seems to work for me.  I am a big fan of niacin which is also found in peanuts in a very digestable form.  Niacin is hugely anti-inflammatory.  I don't eat lots of peanuts as they are so high in calories though.  Boy do I love a bag of roasted peanuts at a ball game!  This past summer I was introduced to boiled peanuts while visiting rhonda........what a new and wonderful experience that was!!  Weird and yummy!!

I love all this talk about food!  It is so important to find what works for you.  I do believe that a whole lifestyle change is in order for this world!  I do use meds but I don't assume that that will ever be enough.  I want to nurture and care for this body as much as I possibly can! 


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.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/29/2009 6:56 PM (GMT -6)   
Too true Gretchen & I love all those foods too.

I always ate a lot of tomatoes, capsicum, green beans, sprouts. Apparently, Alfalfa is the worst for inflammation (has the highest amount of that inflammatory amino acid) & here if you buy sprouts, 99% of the time they have a mix with alfalfa. So now I am sprouting my own radish, broccoli, fenugreek because sprouts are meant to be so beneficial.

The trouble is the feeling good, strong and able to do so much more than usual is fairly subtle. It also did not happen overnight maybe took a week or more.

So I am not sure what exactly is working but I will start reintroducing the foods I love slowly & one at a time, waiting a couple of weeks before I introduce another one, and see if I can identify the culprit.

I liked your tip about the niacin. I think that gives me the excuse for peanuts to be the first thing I re-introduce. Yummmmm! I am also taking turmeric every day which is meant to be anti inflammatory.

The interesting thing is the buzz out there is now that diet is the most important thing, definitely more so than supplements. Though I have yet to find a neuro who believes in it. I would love to see your neuro!
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Love is a many splendoured thing


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3124
   Posted 4/29/2009 8:01 PM (GMT -6)   

Yeah my neuro is very cool.  She is super into the overall health.  She is completely willing to discuss diet and encourages such talk.  She is supportive of my no dairy.....she is ambivelant towards gluten free.  She says the research does not support gluten free.  She is very very into all fruits and veggies and is up on all the supplements. 

She is also very good with the traditional western meds too.


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.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/30/2009 1:37 AM (GMT -6)   
Right Gretchen I do no wheat & no dairy too. I have forgotten why wheat is bad can you remind me? I do get really frustrated by not being able to have lollies because they are all made with sugar - from wheat!! What happened to old fashioned cane sugar?
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Love is a many splendoured thing


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3124
   Posted 4/30/2009 8:22 AM (GMT -6)   

the theory is that wheat is inflammatory.  The studies on that are all anecdotal though that is why I only do low gluten and not no gluten.  Some of those studies showed that some did worse on no glueten.  I think it is whatever works for you.  For me, I need grain fiber (poor gut motility) so I won't do no wheat.  I do avoid all white pasta and breads.  I will eat a whole wheat product evey once in a while.  I also love flaxmeal as a wheat replacement. 

I think it is different for everyone.  I look for what helps me feel good.  I don't necessarily avoid anything based upon what the media or others say.  I give it a try and decide if that is worth doing. 


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.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/2/2009 3:07 AM (GMT -6)   
Hey Smily,

I have a baclofen pump & love it. T he last 12 years I have had gradually escalating pain & spasticity. Then these really went crazy the last two years - leg & spine went rigid & pain went through the roof. I could not take oral baclofen but the liquid equivalent (lisoreal) in the pump has given me my life back. NO more pain and much less spasticity & I even sleep better. I am sooooo happy. smilewinkgrin smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.

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