Tandy..... Calling Tandy !!!!!!!

Discussion in 'Fibromyalgia Main Forum' started by KathiM, Aug 25, 2003.

  1. KathiM

    KathiM New Member

    Hi Tandy........

    Thanks for your post over there....I did see it but am not there anymore !!!!! Guess I'll hang here where I started.

    In response to your questions etc......and perdicament.....it sounds as though your Dr. truly suspects something or else he woouldnt do the prednisone....

    I am curious as to your ANA level that was pos. I also ahd many negative ANA and finally got my first pos one about 3 months ago and just had another one done today and of coourse dont know the results.
    As I am sure you know ....MCTD/Lupus is hard to diagnose in some cases and yes you can be ANA negative and have it.
    Are you experiencing any other clinical symptoms ????

    I ahve the muscle weakness......joint pain , extreme photo sensitivity and the list goes on......
    The C-reactive protein can just be another indicater especially if your sed rate has been whacky.

    I would assume the next step for your Dr to try would be plaquenil...........I did that and did feel good BUT had a horrible reaction...

    By the way... have you been mycoplasma tested ?????
    I WAS AND GUESS WHAT ????? I am POSITIVE for mycoplasma m-pneumonia so..........that is a big issue in my life right now BEFORE anything ELSE !!!!!!!!!!!!! I need to get those BUGS out !!! This could be your problem??????
    Tandy.... what state do you live in ?????
    I always have to ask that !!!!!!! lol....
  2. Mikie

    Mikie Moderator

  3. tandy

    tandy New Member

    So glad you stayed over here!! I really am!
    I'm in upstate NY~ I like it here, but gotta say that the medical help in and around this area is very poor.(esp.when were dealing with autoimmune disease and FM/CF)
    Than again....If I had better insurance i'm sure i'd have more to choose from as far as good Drs. I've been approved SSI and with that comes medicaid....not many drs even take that~ Anyway....on to at least some of the questions you have...and I so much appreciate your time~
    I have never been tested for Mycoplasma.Is that something that any dr will do if you ask for it?
    First off a lil history...(bear with me!LOL) I started feeling ill soon after my 11 yr old son was born. All the typical symptoms of Fibro but I did'nt know of it at the time. I must have seen at least 5 drs. before I was DX with FM,and 2 herniated disks,and mild scoliosis. Two of the drs. suspected Lupus way back then ,and I tested negetive so that was that.
    Over the yrs my FM symtoms have progressed alot. I also get bad headaches that feel like they're coming from my neck. The drs. call them muscle contraction headaches. And sometimes migraines.(I get both types)
    My sed rate was found to be high a few times over that time frame...and once I went on prednisone just to bring it down.But once I was on the pred.(and it did seem to ease my symptoms?)I started reading about that drug and got scared by all the bad side effects so I told my dr. that I really wanted to wean off the pred.And so I did.
    I was on it for 2 months...which brought my sed from a 58 down to a 30. Then a few times since it was acually in the normal range.
    Well....About 2-3 months ago I started having alot of pain in my legs when I walk,and a feeling of weakness too.although the pain is worse. My leg muscles just ache real bad all up the backs of the legs mainly(calves are bad). I also had some neck stiffness and I lost some ROM in my neck,as if a nerve was being pinched...it would catch or something?? About the same time,I noticed a mottled like spider vein looking rash all over my torso.(I thought it looked like increased bloodflow to that area)And I felt as tho I was just having a bad FM flare~ Tired,achy,flu like,ankles hurt,legs hurt,shoulders....you name it,it hurt!! So I went to my Rhuemy and said that I'm really feeling terrible!!she ordered some bloodwork and when it came in, she told me I had a possitive ANA(which could indicate lupus)and my sed rate was up again.(my ANA was low titer....not even sure what that means?)
    So she reordered more bloodwork that week...and when those results came in she said the Lupus one looked ok???????
    She is now referring me to a pain clinic and a Neurologist.Which she said last week.....and I have'nt heard back from them yet with an appointment!! So its all confusing to me!! the rash on my belly and upper legs is gone today. But i see it off and on. Oh also...When I get more than an hr or so of direct sun....I break out in these little tiny blisters like.Scattered here and there over my body,and they itch!! But overall.....My body just feels like hell!!!The first thing I notice when I open my eyes from sleep is pain.All over body aches,some morning stiffness thrown in for fun!!!LOL Very cloudy brain!! fog is a big complaint and pins and needles in my feet and arms.???? So....what do ya think!!!?lol Do you want the job,of figuring me out!! Any insight is welcome and helpful! take care sweetie :)
    Warm regards, Tracey
    I think I deserve a catnap!you too if you got this far!!LOL
  4. KathiM

    KathiM New Member

    Sounds like we have a lot in common.........
    First off your Rheumy sounds good and bad........
    the good part is the neurologist as he will give you an emg and test for neuropathy........(dont believe the horror stories) I just had one in June and it was totally painless !!!!!! I would do it again in a minute.
    I complained and moaned for 2 years of the same muscle weakness and aches and burning tingling feet and sore throbbing calves... my other rheumy ignored me and the new rheumy in may ordered this test and sure enough I have sensory perephial neuropathy of both lower extremities.

    The bad part of your rheumy is she is going by your ANA alone and NOT symptoms !!!!!! I would seek out another !!!
    I know they are hard to find..... As I said we can be ANA neg and still ahve lupus.....it sure sounds like you have multiple symptoms so.........

    As for the Mycoplasma ......a lot of Dr's dont understand this.......
    If you can get me your email somehow I will try and direct you to some info and sources. Your medicare should pick it up with some Dr.
    I know we are not suppose to post emails but ....????

    I amoff to my new rheumy myself today so wont be back tl later today......
    Hope to hear from u

    Your friend in California ....
    My hubby is originally from New York !! lol
  5. tandy

    tandy New Member

    Hope your appointment went well!!! tiring days.....when we have appointments!! I'm also trying to finish up school clothes shopping,the kids go back next week!!so fast this summer went!! Anyway....i'd love some info on mycoplasma testing or anything in that nature~ maybe I could leave my addy in my profile for a day or untill you let me know you've got it.Then I could delete it. I'm gonna look on the computer tonight at perephial neuopathy.I'm not sure I read anything on that condition.
    While i'm thinking of it(cause I lose my thoughts quick!!lol)If I cross my legs while sitting....my lower legs go numb and the pins and needles sensation in both feet.(more the right side) If I fall asleep on my arm,it'll get like that too. Same with my legs. etc....even my ear lobes have gotten like that if I lay on my side!! do you ever get this? So....How are you gonna get the 'bugs' out?(myco's)Are you gonna do the long term antibiotics?? thats nasty those critters!! I would'nt doubt that I have em inside me!!! but to have it confirmed would be an issue i'd want treated!! wishing you luck with that. Are there certain symptoms to look for with this mycoplasma?? I know i've read about this before!!! I almost think that I read where the government was behind creating this resistant mycoplasma for bio-terrorism???another story~won't go into that one. Let me know when you want me to post that in my bio.....Then i'll get it right out.(too many Mansons and Gacy's out there!LOL) Thanks again. talk soon :)
  6. KathiM

    KathiM New Member

    go a head and post it and when I get it I will email u right away......
    I wil be on the look out the next couple hours
  7. tandy

    tandy New Member

    I'll check back soon. Thanks!! :)
  8. KathiM

    KathiM New Member

    got it !!!!!!