newbie here not dx'd many symtpoms though very scared

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Regular Member

Date Joined Aug 2012
Total Posts : 47
   Posted 8/26/2012 4:58 PM (GMT -6)   
I have had many ms-like symptoms over the years ranging from bladder and vision issues to sensory-tingling,pricking,burning,numbness. My MRI's were always normal, but I still thought MS.

Then last week at the beach I got some rashes on my legs--looked like I had shaved without shaving cream. Also red cheek-left one- and nose a little red and right cheek a little pink. After it faded skin was dry and tight and then flaked some. I had some ezcema in february on my face as well.

Several months ago I had some mild joint pain in my wrist-went away when I was on vacation in the bahamas where I got alot of sun and no rashes. This was in April.

other symptoms: I also run out of breath quickly, hard to take deep breath, some hearing loss, tips on toes and fingers get numbed when chilled for about an hour (i.e. supermarket shopping), also thighs will get numb from the cold if im out too long, eyebrows thinning.

I am going to see a rheumy in November. It was first appt I could get. I am scared. I have had ana tested 6 years ago was the last time-normal. SED rate was testing a few weeks ago-normal.

I am confused, I thought Dr. Wallace had said negative ANA means no lupus and it is unlikely to change to positive if it is normal. IS this true or no? I have read to the contrary on other forums.

Also, I fear I have CNS lupus and am worried about being put on steriods and immunosuppresants.
if I do have CNS lupus or peripheral nuerapathy caused by lupus , what is the prognosis? I have been doing very well for the past 24 years with no disablities. Please let me know,Im very nervous and scared.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 8/27/2012 11:52 AM (GMT -6)   
I don't know a lot about CNS lupus. Try for more infomation on it.
When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined Jun 2005
Total Posts : 541
   Posted 8/27/2012 4:10 PM (GMT -6)   
Have you tried calling your Rheumy office and asked to be put on the cancellation list? Sometimes that helps you get in sooner if someone cancels they will call you to get you in earlier.

In the meantime, try not to worry about yourself, or your daughter. If I have read your posts correctly you haven't been diagnosed yet. I know it is hard knowing that something is wrong but not knowing what. I drove myself nuts with worry before I was diagnosed. Its not worth all the stress, especially since stress triggers my Lupus to flare.

Try to relax and see if you can get into the doctor earlier.

Take care,
Mary Ann

Regular Member

Date Joined Aug 2012
Total Posts : 47
   Posted 8/27/2012 4:33 PM (GMT -6)   
Thanks Mary Ann. It all just doesnt make sense to me. I did not present with the more usual first "lupus" symptoms from the beginning. Now all of a sudden, after 24 years, I am having them. Also, it all started with a UTI. Did I have some type of infection that was left untreated and turned into an auto immune disease.??? Who knows. Maybe I will never know.

JP Nana
New Member

Date Joined Jun 2012
Total Posts : 5
   Posted 8/28/2012 4:04 PM (GMT -6)   
Scaredmom2 I just sent you an email. I look forward to talking further. Nutrition is the key to healing and that requires removing all chemicals from your diet. It is a difficult adjustment but very manageable. I know it will help! I am walking, talking proof! Research proves it as well.

JP Nana
New Member

Date Joined Jun 2012
Total Posts : 5
   Posted 8/28/2012 4:07 PM (GMT -6)   
Also, the UTI and probably an underlying virus are probably the root of it all for sure. The belief is that you have a virus, start an antibiotic and your body because it is confused begins to war against itself. If you can get your immune system back into balance, you will improve.

<Edited to remove profession from signature. We are all equal members here, no references to dr, nursing, other medical training, etc should be made.>

Post Edited By Moderator (Lynnwood) : 8/28/2012 3:11:07 PM (GMT-6)

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