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Old 08-15-2009, 07:57 AM   #1
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is it MS or lupus??

Hi, I am in the tedious process of being diagnosed. My Rheumatologist is going back and forth between MS and Lupus. My grandmother had lupus and I have about ALL of the indicators to having lupus. But, so far, my bloodwork is all negative. I started taking the depomedrol injections and they have helped tremendously. I have the most horrible heat waves and a very cloudy brain sometimes which are the only things, I think, that sound like MS. I neraly pass out in the am I am so overheated when I get out of the shower. I had a negative MRI of brain, and really think I have lupus. My DR says he is 98% sure it is lupus despite the neg tests. He will recheck every 6 months bloodwork. Any advice would be greatly appreciated. Up until this point my symptoms have been countinuously passed off as fibromyalgia(which my Mom and sister have both been diagnosed with). I am disgusted and not sure what to do?

 
Old 08-15-2009, 01:38 PM   #2
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Re: is it MS or lupus??

I am sorry to hear what you are going through. Lupus can be more readily determined through testing than MS. I had an aunt who had Lupus. As to your dilemma with the shower, lower your shower temp by a few degrees until you find a setting that does not exacerbate your condition. Allow the doctor to run the second blood test. If it is to no avail, ask him to show you why it is Lupus and not MS. If his evidence does not appear to be adequate for a diagnosis, ask for a referral to a MS specialist to allay your concerns as to whether it is MS.

My aunt went through cognitive moments while she battled Lupus.

Stay strong and stay positive!
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Old 08-15-2009, 07:20 PM   #3
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Re: is it MS or lupus??

The testing can get very tedious, and sometimes discouraging and the showers I was a hot shower girl and after being dx'd I could never figure out why I had to lay down for a bit when I got out of the shower, and so yeah I had to lower the water temp too and that worked, cool showers are nice esp. in the summer.

My mom had Lupus, and my neuro said that it is not uncommon for another family member to get an autoimmune disease and like you, she failed all the Lupus tests, they finally decided to treat her as if she did have Lupus and that worked and then along came fibromylagia and all the other fun stuff that comes your way w/an autoimmune disease.

I now look back and see where I had MS symptoms a long time ago, and it just decided to surface a few yrs ago, like numb legs, the L'hermittes [that numbness down your spine] always was clumsy, and the heat issue

I like the idea of challenging your dr as to why Lupus and not MS, too many people don't question and they should This is a great site to help you feel
not so alone that other people have similar pains, and issues. and keep that dr on his toes w/the challenging maybe you want to do a little research on autoimmune diseases, what it effects, how it effects, just a little more information for you to know use when you are challenging your dr
Hang in there
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Old 08-16-2009, 03:10 PM   #4
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Re: is it MS or lupus??

Im slightly confused...Lupus and MS dont have the same symptoms, except for the fatigue...Lupus tests are usually confirmed with blood work, are they not? MS is never confirmed with blood work, except by ruling out everything else, including Lupus.
MS does not have sunlight sensitivity, as Lupus does...MS does not have a rash as Lupus usually does....MS does NOT affect the joints, as Lupus almost always does.

MS is always tested by first a Brain and Spine MRI, then ruling out blood infections and deficiencies...sometimes by adding a EMG and a Spinal Tap, or LUmbar Puncture...the symtoms which accompany MS arent usually like Lupus symtoms...the heat sensitivity thing, can be from almost any autoimmune disease, although, with MS it can be crippling. MS ers do not tolerate hot showers or hot tubs (or baths) usually, very few can survive a hot tub experience and not bring on symtoms....there are exceptions though. Even a blow dryer on the back of my head can make me weak and dizzy! MSers tend to have balance issues, gait issues, strength issues and even cogitive issues- none of those things are usually associated with Lupus.

I have two people in my family (cousins) with Lupus, and I can honestly tell you we do not share symtoms at all....they avoid the sun due to sunlight exposure issues, while I avoid the sun due to heat tolerance issues...thats where our similarities end. Both of my cousins were dx by blood work- whereas I was dx by having typical MS symtoms and many lesions in my brain shown by MRI.

Are you sure you want to be considering MS ?? Its not a very usual comparison to be making...I would highly suggest going to see a new doctor, a Neurologist, not a rhemutologist- to find out if this is a Neurological disorder, from there, you can look for specialists in the field of MS if necessary.
Good luck to you.
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Old 08-19-2009, 08:59 AM   #5
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Re: is it MS or lupus??

I know it does not make sense, but I have more than lupus symptoms. I do have problems with my gait, I do have cognitive problems. I do get dizzy with the heat, where I used to be freezing all the time. The problem is, I have so many varied symptoms.

 
Old 08-19-2009, 09:03 AM   #6
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Re: is it MS or lupus??

Thank you. I wish I did have cut and dry symptoms, that would make life so much easier. My symptoms don't even do me the favor of staying the same, they change all the time. The pain moves everywhere too. Take care and thank you.

 
Old 08-19-2009, 09:09 AM   #7
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Re: is it MS or lupus??

thanks, I think the cognitive problems are the most disturbing. My grandmother had Alzheimer's and my family is very paranoid about getting that. I am almost forty and some of the memory loss episodes are frightening. I will hang in there. My rheumy has been discussing plaquenil? with me and I am being reluctant until we are more sure. I did respond to the depomedrol fairly well. The first time I got it I woke up dancing in the morning and actually sprung out of bed. I used to be stiff as a board in the morning and I could not even bend my joints. That has improved drastically. Thanks for the support.

 
Old 08-19-2009, 09:12 AM   #8
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Re: is it MS or lupus??

When you say numb legs and spine do you mean the whole leg or just the outside? I have several areas on my body that are numb always. They have been for a long time. My spine is not numb, but it is extremely sensitive. I cannot stand someone to even touch my back lightly, I go through the roof. There is no way I could have a LP.

Last edited by flowermum; 08-19-2009 at 09:13 AM.

 
Old 08-19-2009, 09:58 AM   #9
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Re: is it MS or lupus??

If you need to test for MS, I would not worry about the LP because it is not necessary to confirm a diagnosis. Many people with MS have normal LP results and many get a diagnosis without the LP.

As you believe that you have both Lupus and non-Lupus symptoms, I would ask your doctor what to make of the non-lupus symptoms. Make your non-lupus symptoms the cornerstone of your search. Could you have lupus and something else? I had a friend who had lupus and Lyme disease at the same time.

As to the sensitivity issues, I have them all the time. For me, plastic, paper, or certain fabrics will cause "shocks" to my system. The first time I had any sensations was when I was 17 and opening a galvanized metal gate. It was as though someone had poked my hand with a hot iron. To this day, I wear gloves around galvanized metal.

A new set of eyes- a MS Neurologist- might shed some light on your case. There is nothing wrong with seeking out knowledge. I would encourage you to get a referral or make your own appointment. You might also talk with other Lupus patients and see whether or not your case is shared by others. Often we will find that our journey follows paths that are well trodden. If there are no similar cases, then you can consider yourself a pioneer. The path you blaze will surely be followed by another.

May God bless you! You are in my prayers.
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Old 08-20-2009, 09:24 AM   #10
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Re: is it MS or lupus??

Thanks again, it means alot.

 
Old 08-21-2009, 06:42 AM   #11
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Re: is it MS or lupus??

Hi - I know how frustrating this is for you. I was diagnosed with MS in 1987. My only sypmtom was daily headaches but my MRI showed several lesions on my brain. I did not have any other sypmtoms. Six years later, because of severe joint and muscle pain, my neurologist sent me to a rheumatologist. I was then diagnosed with Lupus. My joints and muscles ached along with my daily headaches. I was immediately put on methotrexate and Plaquenil. Both drugs were godsends to me. My last MRI showed more lesions last year and I finally gave in and started Copaxone. The doctors think that the methotrexate that I have been on was probably helping the MS but it definitely helps with the Lupus. My primary issues are with the Lupus. Although it's not common, you CAN be diagnosed with both. They're both autoimmune diseases.

Also, I have a hot tub and it works magic for my aching muscles. I go in at night because it is fatiguing. But the trade off is worth it.

I wish you luck getting a proper diagnoses. It's frustrating but don't rule out the fact that you could possibly have both.

BTW, I work full time and if I take all my meds, you would never know that I have two autoimmune diseases.

 
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