advice from my forum family

Hello:

I have posted on the lupus, Fibro, lyme and MS sites..because I'm lost.

I have had issues with my muscles and joints and all the weird things in between since 1998.

I was convinced that I had MS for years, and after seeing several neruorolgist I and being told that it was fibro, I accepted the dx.  My symptoms are:

Muscle pain (achey) pins and needles sometime , weakness (in L.leg at times), twitches (even my lips), tremors, shakey muscles (when walking).  One day my gums was hurting (it felt like my teeth-sharp pains) for about an 30 mins.

My insides trembled one night (weird)

Joint paint and popping (no swelling)

Tongue, eye, ear, nose, head and facial pain (aching and burning)

Dizziness: balance coordination and unsteadiness

Forgetful and short memory lost (and then I say oh yeah I remember)

Gerd- which was causing sleep apnea

Weak swallowing muscles (no choking) and soreness inside of throat/espohagus when I have flare... had barium swallow test and upper scope.. (basically normal).  ENT say spasms from refulx (??)

Recently: I noticed my hair thinning- I'm not sure whats going on..I'm not sure if its because I was trying to be a kitchen beautian:+0.. I permed it about a month ago.. was not coming out then (not that I noticed).  It does appear to be over processed looking..  but it most bald in the back of head (boo hoo).

TEST: MRI 3X, CAt scans (back too) , emg 1x, evoke poteintal (once),

Many blood test:  ANA 1:60, sed rate 7, dsDNA (?)-negative. General blood test were with in normal range.

Was in the hospital 2 weeks ago for 3 days, for dizziness etc..saw rheumy, neuro, ent and PCP.  No dx, everything was okay..except the ANA.. Rheumy doubts if its lupus (say I don't fit the criterias) , neuro say take Cymbalta. Was released with rx for mortrin and vicotin. 

My PCP took blood yesterday to test for lyme and b12 etc. and other stuff not sure what. Sceduled for EMG on the 18th..(starting all over).  over, and over and over....

I only feel bad when/right before it rains/snows or the humidity is high.  The summer is my best time and when I was pregnant.  I felt great. Working in the yard and jogging etc.  It like the sun re-energize me.  I have been going thru a flare now for almost a month!!! Was off work for 3 weeks, went back for 2 day and took off today before the holiday.  My eyes hurt so bad.  I had them tested before..(fine).  Its like I'm inflammed..but not showing on tests.

My spirits are getting really low..waiting and constantly going to doctors and ER only to be sent right back home.    I had one doctor look at me and said WOW when I explained everything (I got a new doctor!!).  I have flares before over 10 years..but it like this time is worst.  My mom looks at me like I'm crazy and says I neve heard of someone going thru what you are going thru.. you need to get back to work it may take your mind off things.

Nobody understands- nobody..except for members on this site!! 

Can anyone help me make sense of whats happeining to me?  I feel like members here sometimes give better insight than doctors.  I'm not depressed yet. but I'm worried and anxious...trying to fight becoming depressed.

Thanks Ginny: You are correct it is 1:64..sorry for misquote. I will try to relax. I really appreciate you taking the time to reply. I will keep you posted on my blood work..should come back early next week.

((hugs))

Hi KE,

I tend to agree with the other ladies, it does sound a lot like Fibro, weather changes play a big part in that. As far as Lupus goes I've never heard of anyone being energized by the sun, actually in most cases it's quite the opposite. For most of us the sun totally zaps our energy. Fibro can make you feel totally horrible, for many years my lupus went into remission, but unfortunately, my fibro did not, so I can truly relate to the symptoms you list above and the worst part is for many years doctors did not take fibro patients seriously. I think that doctors are slowly coming around and truly believing that it is a true syndrome and that we are not all crazy, we truly do have these feelings and need real treatment in order to cope day to day. I know weather changes, especially from one season to another or if I travel from one elevation to another I am hit hard with a flare.

Hang in there and do as much research as you can. Listen to your doctors and keep a journal of your symptoms. This will help you a lot.

Best of luck to you in your journey for a proper diagnoses.
Happy Thanksgiving
Melissa