I posted this in another forum but wanted your advice too

[deebrown30]

Hi all! I have been all over Medhelp mainly for support but also looking for answers.  My post may be lengthy so I apologize.  In April of 2009 I started having symptoms.  I was shopping when suddenly my legs became so weak I had to sit in the middle of the grocery  aisle for fear of falling,.  I was in a pretty busy part of my life and I assumed that it was caused from stress and lack of sleep.  I came home went to bed and woke up the next day with leg weakness and double vision.  Later that day I noticed my eye was red too.  I went to the er(I had no insurance at the time)  and they immediately did an MRI of my head.  This came back ok.  They said the redness in my eye was probably allergies and not to worry about it.  I did not listen to them because something inside of me said it was more than allergies.  I went to an opthamologist and he diagnosed me with Uveitis.  I had never heard of this before but he asked me if I was having any other symptoms and when I told me my myriad of symptoms he suspected an auto immune problem.  He referred me to a rheumy and from there it has been a nightmare.  I had recurring uveitis for 11 months finally oral prednisone took care of that but I fear getting that back as it is quite unpleasant.  Over the past 14 or 15 months I have had numerous symptoms...some stay some go....here is a list

1. Severe vertigo in the beginning now it has lessened but it is there(mainly after I have sun exposure or while I am in flourescent lighting) also more noticeable around my period.
2. Muscle pains(like charlie horses) in my legs and upper right abdomen.
3. Stiffness in my legs and hands and pain in my shoulder.
4. Lower back pain(MRI shows nothing) but I feel it.
5. Uveitis
6.  Hives when I get cold(have pics on my profile)
7. Rash from sun(have pics on my profile)
8. Sun makes me VERY ill....dizzy, sick to my stomach, fatigue, and sore all over
9. Now I have brown spots on the bridge of my nose and cheeks they look like melasma.
10. Severe fatigue from day one
11.  Libido went away
12. Periods stopped for 4 months then  started again but now I have one every other month or so.
13.  Bowel symptoms almost like IBS.
14. Some anxiety( mainly from weird symptoms scaring the crap out of me)
15. Mild depression( mainly in beginning when I was bed bound.
16. Extreme sweating...I will soak through my clothes even when everyone else has very little sweating.This is a newer symptom.

I appreciate all input.  I am at a point in my life where I have decided to function to the best of my ability  and to not let this illness rule me, however, it is always in the back of my mind and I have daily reminders that I am not well.  My PCP thinks auto immune, my rheumy  told me once an ana is negative it stays that way, and the nuero was the biggest jack *** I have ever met.   I now know that my rheumy was wrong also from talking to Lupus patients.  My PCP is great but she is at a loss.  Thanks for any help.  Please look at my photos too if u have the time.
Thanks
Dawn Brown

[deebrown30]

Hi there! Yes it is a lot to deal with but I am learning to live with it.  I have seen only one rheumy but I made an appt with a new one.  I see her next week.  They tested me for Lyme with the elise test and said negative but I have heard there are many false negatives on that test and a western blot should be done.  As far as Lupus, my old rheumy told me my ana was negative and i will never change so it is not lupus.  i have since learned that your ana can and does change so the next rheumy i see I am spending time in sun before I go and then I am demanding another ana.  i will surely keep you posted and lol at cfs and a coke.  We have to find the humor huh??  Take care sweety!

[silkcut]

Hi dee

That's a long but very clear list of sx. What a load to deal with.

I'm with binx on this...find another specialist. But, forgive me if you've been down this route: have they ruled out lupus and lyme?

(Sounds like a cocktail, doesn;t it?! 'What's yours? 'Thanks, I'll have a CFS and coke please!' ;-)

bestest to you
sammxx

[deebrown30]

Yes my rheumy was at a University.  LOL....but I am seeing another one in that office.  I really have no choice because if I see one elsewhere then I will have to wait months to get in and I do not want to wait anymore...thanks for ur kind words

[illinwithoutacause]

hi dawn,

i am so sorry to hear that you're now dealing with another symptom--the spots on your face--but i am even more sorry that you are still not getting any answers from your doctors.  can your primary doctor refer you to another rheumy?  are you anywhere near a university medical center?  

i know what it's like to beat your head against the wall with doctors who dole out inaccurate information rather than just admit they don't know and refer you to someone who might be able to help.  it is crazy-making and i hope you can somehow find another specialist who is willing to help you.  don't settle for deadbeats like your rheumy & neurologist.  don't give up.

best wishes and hugs to you,
binx

[deebrown30]

the pic of me is the newest saga...brown spots on face