Not diagnosed, just questions

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MomOfAnAngel
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/7/2009 12:37 PM (GMT -7)   
Where do you begin. Do you go to your primary first or start with a ruhmey.
I have MS but have had some new symptoms that seem to go with Lupus, such as a strange rash on my face, my fingers get blue when their cold. I have lots of back pain and I think there is more than one reason I don't believe it is all from MS.
One of my hands swells up for no reason. I can't say that I have a lot of joint pain.  I also have lots of skin conditions such as psorosis sorry if that's spelled wrong. And I have allergies.
 
I may be completely wrong about the Lupus. There are so many things that goes with these diseases. I have GERD, IBS, double vision and lots of MS symptoms of course.
 
Just started researching Lupus and thought I would get the advise of the experts those who live with it every day.
 
I have been tested for Lupus many times with blood work and nothing has ever said that I had it, but that was before I started with these other symptoms.
 
Thanks for any information you can pass my way, just not sure where to start.
 
Hugs
Lynn

Lynn
Proud Gold Star Mother Of
Cpl Christopher W. Belchik
USMC
KIA IRAQ August 22, 2004
God Bless Our Troops


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 3/7/2009 1:01 PM (GMT -7)   
Hi Lynn,
 
I can understand how difficult it is to figure out what symptoms go with which diseases. Not easy at all. I think the best place for you to start, is to see the specialist that deals primarily with your MS.  Talk to them about these symptoms and find out if they are MS symptoms or if they could be something else autoimmune. From there, your specialist can hook you up with a rheumatologist or other specialist that they might think will help.  You'll get in to see a rheumy faster with a doctor referal.
 
Your symptoms definitely go with Lupus. Psorisis/Eczema is autoimmune.  I'm not real familiar with MS, but do you have a positive ANA with it? 
 
I hope this helps Lynn. You'll get other responses too from members with more advice and ideas for you!  Please visit us whenever you need to.  Ask us lots of questions.  We'll do everything we can to help you along.
 
Blessings!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


MomOfAnAngel
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/7/2009 1:50 PM (GMT -7)   
Thank you Ginny. No I don't believe I've ever been told I have a positive ANA. I will check with my MS doctor and see what he thinks. Thanks for your response.
 
Blessings
Lynn
Lynn
Proud Gold Star Mother Of
Cpl Christopher W. Belchik
USMC
KIA IRAQ August 22, 2004
God Bless Our Troops


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/7/2009 3:29 PM (GMT -7)   
You're welcome! I hope and pray you don't have Lupus.  To have it and MS is probably the biggest example of an injustice I can think of.  No one should have to live with either, let alone both.
 
Please keep us posted on how you make out.  Also, www.lupus.org is a good website to get some FAQs.
 
All my best,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/7/2009 6:14 PM (GMT -7)   
Hi Lynn, we all know waiting for answers is so frustrating! I agree with Ginny to start with your neuro, tell him/her all of your symptoms and see where it goes from there. Lupus is hard to dx because there's not one test to dx it so I think that makes doctor's more reluctant to dx too quickly, they want to be 100% certain before giving you a dx like that. They also refer to a "criteria list" usually if you have 4 out of 11 they will consider lupus. It's on the website Ginny told you about, here is a direct link:

www.lupus.org/education/topics/outcome.html the list is towards the bottom of the page.

I sure hope you don't have lupus on top of MS, please keep us updated on how you are doing and feel free to ask more questions. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


MomOfAnAngel
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/7/2009 8:18 PM (GMT -7)   
Stacie and Ginny thank you both for being so kind and helpful.
I'll let you know how things turn out.
 
I hope you are both doing the best you can with your disease and that you have good doctors that you can trust.
I'm so blessed to have such a great MS specialists.
 
Hugs
Lynn
Lynn
Proud Gold Star Mother Of
Cpl Christopher W. Belchik
USMC
KIA IRAQ August 22, 2004
God Bless Our Troops


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/8/2009 9:36 AM (GMT -7)   
Lyn, I'm so glad to hear you have a great MS specialist.  What a blessing! I hope your Sunday is a good one!
 
Talk with you soon!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


MomOfAnAngel
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/8/2009 10:20 AM (GMT -7)   
I do have a question about this strange rash or breaking out on my face. I am not a person who breaks out on their face even though I suffer with skin conditions my face is not effected. But this started a couple of months ago and it was just a few spots on my cheek by my hair line on one side and then a few spots on the other cheek under my eye. It sort of went away but not completely and now I have it all the time but it's seems to be spreading. I have a few small spots on my chin and forehead and a couple on my nose. A few a are almost the size of a hive.
On the side that has the most bumps it's sort of red and the area above it looks really light . Well it's just strange and I can't find any pictures on line that look like it because those show much worse cases.
 
Would a Lupus rash come on all at once or could it start out with a few bumps and then just keep getting more.
Plus the few that left at first all came back in the same exact spots.
 
Thanks again for every thing.
 
Hugs
Lynn  
Lynn
Proud Gold Star Mother Of
Cpl Christopher W. Belchik
USMC
KIA IRAQ August 22, 2004
God Bless Our Troops


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 3/8/2009 10:33 AM (GMT -7)   
The lupus rash is a inflammation that can look very much like you are describing -- but there are hundreds of other reasons for rashes as well. Mine isn't there all the time -- in fact is rarely present -- but when it is I have two little circles under each eye that get red and sometimes have little pimple-like bumps on them.

I know you are waiting to see your MS doc, but in the meantime you might check lupus.org and find the local chapter in your area. By looking at the local chapter website and talking to local people you can find which rheumy's in the area are lupus-aware. Not all of them are experienced with dx and treatment of lupus.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882


MomOfAnAngel
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/8/2009 12:29 PM (GMT -7)   
Thank you Lynnwood that is a great idea.
A couple of my bumps actualy have the pimple like look to them.
My niece who is an RN was just here and she said it does sort of have a lupus look to it but who knows. She suggested I take my allergy pills for awhile every day and see if it goes away, that I might be dealing with an allergy.
 
 
Thanks again for all the great information from every one. I will let you know what I find out.
 
Hugs
Lynn
Lynn
Proud Gold Star Mother Of
Cpl Christopher W. Belchik
USMC
KIA IRAQ August 22, 2004
God Bless Our Troops


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 3/8/2009 6:38 PM (GMT -7)   
Hello everyone. I am crashing your party. I just happened upon this post. We have had a member on our board with both Lupus and MS. It is a strange and totally unfair susceptability but when you have one autoimmune you are likely to have more. So it is possible to have Lupus and MS. Like Lupus, MS is very difficult to diagnose. It can take years of waiting and watching and ruling other stuff out. We do have lots in common.

Many of our member have other autoimmune problems. Some of them are as common as allergies/asthma and others have vasculitis, arthritis, lupus, and more. I had a strange one called granuloma anulare. It is a skin disease that is often a precurser to RA. I had had it for years. It is ugly but completely harmless. The cool thing is that it responded to the copaxone.

MomOfAnAngel, good luck with your quest for answers. Let me express my deepest sympathies at the loss of your precious son.
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.


MomOfAnAngel
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/9/2009 9:29 AM (GMT -7)   
Gretchen thank you for posting and especially for your condolences on the loss of my precious Chris.
 
I deal with a lot with my MS but there is nothing that compares with the pain of losing Chris. He had been in Iraq twice and was 32 days from coming home and 40 days from being out of the corp. I guess God had a different plan for him. This heart aches is my biggest struggle. I'm just doing the best I can.
 
Hugs and many thanks to you all.
 
Lynn

Lynn
Proud Gold Star Mother Of
Cpl Christopher W. Belchik
USMC
KIA IRAQ August 22, 2004
God Bless Our Troops


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 3/9/2009 5:58 PM (GMT -7)   

Lynn,

I can't imagine.  I have two boys and I can't fathom the pain of losing one.  Our closest family friends lost a twin son to brain cancer when he was not quite three years old.  The pain they went through was unbelievable. 

I truly, deeply appreciate the sacrafice and work your son did for our country.  I know it does little to alleviate your pain, but please know that I am very very grateful for your Chris.  I am also grateful to you for raising him.  You obviously raised a giving, hard working young man.


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.


MomOfAnAngel
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/9/2009 7:29 PM (GMT -7)   
Gretchen, thank you for such kind words. It took Chris awhile to grow up. He didn't join the Corps until he was 26 years old. He turned 30 in June and was killed in August. He decided he needed the dicipline he could get from the Marines and he wanted to be the best Marine he could be. I have heard wonderful stories about him and the things he did while serving, they didn't surprise me because he was always such a good hearted loving soul. He did receive the Bronze Star with V for Valor for saving several lives. I never knew you could ever miss another person so much.
 
I didn't realize when I first looked at your post that  you also have MS. I hope you are doing ok with your course with this disease. I too take Copaxone.
 
Well I didn't mean to get off of the subject of Lups I just wanted to say thanks. It always helps us when people think about our son.
 
This is a great board. I love how everyone respondes to you even if your not diagnosed. I belong to 2 MS boards and they are very helpful too.
 
Blessings
Lynn

Lynn
Proud Gold Star Mother Of
Cpl Christopher W. Belchik
USMC
KIA IRAQ August 22, 2004
God Bless Our Troops


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 3/9/2009 8:14 PM (GMT -7)   

Lynn,

Thank you for asking, I am doing just fine.  I am holding steady for the time being.  It was very nice talking with you here.  No worries about getting off topic.  This was a small bird walk :)


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.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/14/2009 11:11 AM (GMT -7)   
Lynn, just wanted to say welcome to the forum. I, too am so sorry for your loss and thankful for your sons service to our country! I pray that you will get some answers soon regarding you health issues. God bless you, judy
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