Dont know if im on the right track but can someone with ms help??!

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Regular Member

Date Joined Oct 2008
Total Posts : 261
   Posted 1/6/2009 3:31 PM (GMT -6)   
Ok. I have been to my pcp twice for a full blood workup and one rheumy since sept. of last yr. I have been tested for everything including lupus. The only things found were im iron deficient and anemic which was treated back in sept. My iron stores are now fine but i am still slightly anemic. This last time I had a uti I was treated for which is gone and a positive ana which was non-specific and blood in my urine. That has not gone away. My pcp pretty much disregarded everything since my uti was gone and said come back in a year. So, I am getting a new pcp and rheumy since he practically did the same thing and am seeing my neurologist jan 29th. So..more importantly I want to share the symptoms Ive had in the past as well as now...please tell me what you think:
Past history:
-seizures starting at 15. Had two and was told I had idiopathic epilepsy. Was treated for 2 years with carbatrol and came off it in march of 06. Still have nystagmus from it but otherwise havent had any but get enough sleep at night.
-Had a 2 yr depression with very rebellious behavior after having the seizures but was told it was just depression and put on meds for a few months. I told them it made it better so came off of the 50mg of zoloft and that was that.
-systolic heart murmur
-Had symptoms on and off for years but didnt pay much attention. I got pregnant in april of 06 and had a miscarriage at 9 weeks.
-Got pregnant again 4 months after and my water broke at 27 weeks and I was hospitalized till 34 weeks when a scheduled c-section was done.
-morning stiffness and soreness(most mornings some mornings its not as bad)
-pressure headaches
-shortness of breath
-red flat rash with no bumps or pustules appears on face alone but sometimes also chest, arms and ears. Causes are alcohol, stress, sunlight and fluroescent light and getting overheated.(appears on face in butterfly pattern.)
-cold hands and feet with color change(white purple and red)
-hot hands or feet(red hot and burning)
-sharp pains in joints, bones and body(intermittent and range in severity)
-burning pain from lower back into knees sometimes all of my legs.
-lower back and leg ache.
-numbness and tingliness in hands and feet
-mouth ulcers
-trouble concentrating and remembering(short term)
-loss of apetite
-mood swings & irritability
-dizziness upon standing
Please if any of this could be ms or anything neurological or if anyone has had anything similar please feel free to message me.  thanks so much -Brit
Mod Note: For u'r protection, please put u'r email in u'r profile.

Post Edited By Moderator (rhondab) : 1/6/2009 3:55:23 PM (GMT-7)

New Member

Date Joined Dec 2008
Total Posts : 18
   Posted 1/6/2009 3:50 PM (GMT -6)   
Hi! Have you had any thyroid tests? some members of my family have had thyroid problems and a lot of your symptoms sure seem like that. Hope you can get to a good doctor and figure this out-best wishes and take care. I hope you get some answers & relief soon.

Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 1/6/2009 5:52 PM (GMT -6)   
Hey Brit

I"m so sorry to hear of all that u've been going thru. I have to say what u describe here doesn't really sound much like ms. The only things i see that could be symptoms of ms are the numbness and tingling, weakness, dizziness and possibly consipation. Something that stands out to me is the butterfly rash across u'r face. That is very indicitive of lupus. U said u were dx'd with lupus?? I would certainly post on the lupus forum here at HealingWell as well as the lyme forum. There may be some who can shed some light on things for u there. Best wishes to u.
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*

Regular Member

Date Joined Dec 2008
Total Posts : 176
   Posted 1/6/2009 7:23 PM (GMT -6)   
Yes, I agree with Rhonda, the butterfly rash is usually a very common sign of Lupus.
Hope everything works out!
-Jenna, Fibro Forum

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 1/6/2009 7:57 PM (GMT -6)   

Hi Brit,

Welcome to the forum.  I am sorry you are not feeling well.  I am glad to see you are seeing a neurologist on the 29th.  I can understand your frustration at not being diagnosed with anything you can aggressivlely treat.  Your symptoms don't scream MS to me.  You have a lot going on.  Only a few of those symptoms could be MS......but remember that all of those symptoms can be caused by many many different illnesses or issues.

This is a great site with excellent information on the diagnostic process of MS.  Good luck.

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.

Regular Member

Date Joined Oct 2008
Total Posts : 261
   Posted 1/8/2009 2:51 PM (GMT -6)   
Ok. First off thank you all for your comments and support. I have had my thyroid tested twice now and its all normal. As far as lupus goes, I was tested twice as well. First all tests were negative. This last time however I had a positive but non-specific ana and blood in my urine. I also had a bacterial infection which has cleared up after a round of antibiotics. The two lupus tests I had done were the anti-sm and double stranded dna. They were both negative. I had an esr and rheumatoid factor done as well both negative. I do feel better though so idk if im out of a flare or what is going on. I also saw a rheumy before the last round of tests with my pcp and i had the c-reactive protein, parvo virus and a few others done non-specific to lupus and all were negative. At the time I felt my symptoms werent as bad as before which is why when it felt like they flared up again I saw my pcp. I really dont know what to think but would like if anyone could find a picture(s) of the butterfly lupus rash. Mine is flat and not bumpy with no pustules. Just looks like sunburn, is hot and burns most times. It comes and goes fairly quickly most times. Im just so confused! Thank you all though for your help. *hugs* and hope everyone is well as can be :) -Brit
*Wifey & Mommy*

Regular Member

Date Joined Apr 2007
Total Posts : 334
   Posted 1/8/2009 3:58 PM (GMT -6)   

Hi Brit,

Here is a link to info on Lupus that includes a photo of the butterfly rash. Click on the image to enlarge the photo in this article:

I have known a few people who have lupus and other AI diseases, and from my understanding, the blood tests are not always accurate. Lupus and other AI diseases can be very challenging to get properly diagnosed, and it can sometimes take years and multiple doctors to finally get there.

 It sounds like you are on the right track with getting a second opinion from a different rheumy, as well as seeing a neurologist. You might post on the Lupus board, and ask if there are rheumatologists who specialize in Lupus. I know that there are general neurologists, and also MS specialists, and many people on here have better luck getting an MS diagnosis or getting it ruled out by someone who specializes in this particular disease. I’m guessing it would be the same for lupus and related illnesses, since they are such a tricky thing to properly diagnose. Best of luck to you, I know it is scary and frustrating to be sick and not know what is wrong.


New Member

Date Joined Jan 2009
Total Posts : 17
   Posted 1/23/2009 7:39 AM (GMT -6)   
Hey there Mommyof121,

I do have a lot of your symptoms so hang in there it took me a long time to be diagnosed.

A lot of your symptoms, especially the butterfly rash, tells me it's lupus. My tests always came back negative, until my regular doctor spotted the rash one day, because it comes and goes, and told me I should show the rheumatologist right away. I really didn't want to because I was tired of all the tests, but I went anyways, and he said it was the lupus butterfly rash, and he took the tests right away, and it came back positive for lupus.

I think you've heard about this before, I'm guessing you get the rash if your out in the cold too long too right? Well, my advice is to go outside when its either summer, or winter, and really cold out, and wait a while until you develop the rash, and go in for the blood work. I did this, by accident and it worked. I'm almost positive if you did it and went in with the rash you'd come back positive for lupus.

One thing that bugs me are the seizures, I hope your seeing the neurologist for that too? You really need to get that checked out better, cause it worries me.

You take care, and feel as good as you can!

Regular Member

Date Joined Oct 2008
Total Posts : 261
   Posted 1/29/2009 6:08 PM (GMT -6)   
Hi there. I had read your post a while ago but never got a chance to respond. I wanted to thank you for your input and let you know you are def not the first to mention lupus.... ive had many ppl mention it that havent been dx or that have lupus themselves. I am seeing my neuro. feb 29th and i will hopefully get something for pain at least until we can figure this out. Last night the pain was so bad I had to take 4 ibuprofen. I know its not good for you but when it gets that bad I cant sleep and I had school early today. The pills made me feel sick to my stomach this morning though so ya cant win lol. I was also wondering when I go to my neuro, along with telling him my symptoms what kinds of questions or suggestions do you have for the appt? I have been seeing this neuro since I had seizures so I know him fairly well. Thank you and take care! Feel free to message or email me. Hope to hear from you soon! -Brit

Post Edited By Moderator (Gretchen1) : 1/29/2009 7:30:50 PM (GMT-7)

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