Fresh from the Dr. with THE Diagnosis....need some advice

Discussion in 'Fibromyalgia Main Forum' started by CPRN911, Mar 31, 2003.

  1. CPRN911

    CPRN911 New Member

    What a GREAT site!!! Spent quite awhile on it today reading...terrific info...but I'm stumped....here's my "history"...would LOVE any/all input...

    50 yr female....Hx Crohn's (in remission 5 yrs..no meds)
    1 1/2 yrs ago spine injury - cord compression at C5/6 had
    fusion...on MAJOR steriods for about 6 months and LARGE doses during and after surgery...
    THEN...1 yr ago Feb had "diabetic episode"..blood sugar 497..no Hx diabetes...only on "diabetic meds" for 4 weeks, off ALL steriods...sugar returned to normal...HgbA1c for this past year in the "5" range...at time of "episode was 11.7"...docs felt "reaction" was to steriods and that I'm "not diabetic"...it's been a year...NOW I'm fighting "hypoglycemia"...FREQUENTLY....diet is HIGH in protein, vegs...LOW glycemic fruits...have not had sugar in 1 year (NONE) and no pastas, breads, or rice...
    Then this past Sept...felt HORRIBLE...heart racing, chest pressure, increased blood pressure...seen in ER...doc said "definitely a cardiac event'...admitted...failed treadmill test at the very end...bought myself a "cardiac catherization" which was NORMAL....was told "it's menopause " (I think NOT...I had a hysterectomy in 1982!!!anyway...progressively feeling worse...hotflashes, weight gain, aching joints, feet burn, visual disturbances, lightheaded, dizzy...many more...ONLY to be told..."menopause"..mind you I was FINE until the spine compression/steriods...I had "mono" when I was 16...anyway...after trying MULTIPLE docs who "blew me off" I found one who would run the lab tests I requested....but today...after getting the results was told "I can give you B12 shots but that's about all"....can anyone give me insight on these labs...I know "individually" what they mean but collectively I think they're pieces of a puzzle that I can't figure out...I've also gained nearly 50 lbs. in 1 years and my calorie intake is 900-1400/day...my exerise is "walking" 30-45 min a couple times a week..I feel too rotten to do anymore...

    CHOLESTEROL - 203 (1 yr ago...146..and my diet is better now than it was...why the elevation?
    SED RATE - HIGH
    ANA - neg
    EBV Ab VCA, IgM - neg
    EBV Ab VCA, IgG - HIGH
    C-reactive protein - High (8.46)
    CMV - neg
    Rheumatoid Factor - less than 14
    24 hr urine - normal
    liver panel - normal
    FSH - 40.2 (POST-menopausal)
    DHEA-41
    T3- 237 (high)
    T3 uptake - 33 (normal)
    Free Thyroxine index - 2.5 (normal)
    T4 - 7.6 (normal)
    TSH - 0.522
    Free T4 - 1.05
    IGF - 142

    I have ALOT of symptoms of hypothyroid...but am "told" that I am NOT hypothyroid...my basal temp NEVER is higher than 97.4...so THE DIAGNOSIS today was CFS/Epstein Barr Virus...do my "labs" support that...and what about the thyroid and the weight gain? Any suggestions on "what to do" and anyone know of any docs in the southern california area who are knowledgable in this area....I've been thru alot in the course of my life...in my 20's in an auto accident that nearly killed me and I spent 62 days in the hospital...but the way I feel and have felt this past year....FAR OUTWEIGHS that experience....ALL responses are MOST appreciated!!!! In advance...after reading this LONG LONG NOTE...thank you for taking the time to respond....
  2. sapphire

    sapphire New Member

    I can't help you with your lab results but your symptoms sound alot like mine. I was dx'd with CFS 13 years ago but always felt they were missing something.

    Then in Dec. 2002, I ended up in the hospital. I was finally dx'd with cervical stenosis and POTS along with diabetes. Also herniated discs and bone spurs in my neck. In case you don't know what POTS is, it is a form of dysautonomia. I saw a specialist for this and he thinks the stenosis is causing the POTS and also may be the cause of the CFS. I am going to see a Neurosurgeon that deals with POTS and stenosis. Most of them say there is no connection but this one has done research and realizes there is a connection.

    Your symptoms sound like it could be dysautonomia. If you don't find answers you might want to request a tilt table test to see. I was in very bad shape before I was dx'd and I had all the symptoms you are having. I truly hope you find some answers. The drs wanted to put me on antidepressants and me knowing I wasn't depressed. They have to have some sort of an answer when they don't know what it is.

    Take care,
    Sapphire
  3. CPRN911

    CPRN911 New Member

    Feel free to send me any info...am about 1 1/2 hr from San Diego (live near San Bernardino) - SUTHERNGRL1@aol.com...thanx
  4. CPRN911

    CPRN911 New Member

    Thanx so much for the info...will definitely check it out...saw the post on the research....gonna look into one of them...just a great site here....appreciate you getting back to me w/this info.....have a good one....
  5. BethM

    BethM New Member

    Hi, I live in the High Desert, work in Rancho Cucamonga. Just saying hello to a 'neighbor'! I just had labs drawn for thyroid, will see my NP in a couple weeks. Essentially normal results, but typical for FMS people. I want a trial on Armour thyroid, if she will support me with this idea. I'm new to my NP and this particular medical group in Victorville, but I'll let you know how it works out, if you'd like. I see the NP, not the doctor.

    Good luck with your search. We're all searching for much the same thing.

    Peace,
    Beth.
  6. CPRN911

    CPRN911 New Member

    Hi Beth....I would luv any info you have....I am seeing a doc 4/18 and will be started on Armour so let's keep in touch....I'm in the "low desert" actually....near Palm Springs...you can e-mail me at CPRN911@aol.com if you're interested....
  7. CPRN911

    CPRN911 New Member

    Yes,,,I go frequently and find it helps TREMENDOUSLY but I'm not sure why...haven't checked to see what "minerals" are in the "springs", but I know they are natural for sure...I usually go to "Miracle Springs", and you're right..you can go for the day, for $5.00...it's a little more if you want to rent a room for the day, but there are showers there, etc....to me, well worth it, and like you, I don't get the same effect from a hot tub....hope this helps some....also...I find that if I wake up and feel the "aches" starting, if I take a Motrin, Flaxseed Oil, Fish Oil, and don't do anything strenous until the motrin kicks in it seems to last me a couple of days....have no idea why....but everytime I get my B12 shot I hurt all over really bad for about 2 days...no idea why....
  8. CPRN911

    CPRN911 New Member

    Sunny...good to hear from you....I know the rates around here start dropping pretty soon...cause weather will get HOT...I'll do some checking and post...You definitely have to watch some of these "spas" off the beaten path...there are 2 here that are very reputable..and have the REAL mineral springs...and are reasonable...like I said...$5.00 for the day....will send some more info later this week after I do some "research"....
  9. CPRN911

    CPRN911 New Member

    thanx for the response...I see a Dr. 4/18 who treats Syndrome X with DHEA, armour thyroid, natural progesterone, and B6/12....and protein diet...have a friend who went...labs looked alot like mine, except for the EBV and she now feels great and has lost lots of weight in addition to improving how she feels...will keep you posted.....
  10. CPRN911

    CPRN911 New Member

    thanx for the response...see the note I posted to Sunny....I see a Dr. 4/18 who treats Syndrome X...after doing LOADS of looking on my own trying to find out what all these labs mean in addition to the EBV....I have been in the medical field over 25 years...and I KNOW how docs can be, but I swear...I am so P.....right now....just being blown off....of course when I nearly broke my neck and it was something they could SEE....well....they couldn't have all been NICER or seemingly more concerned....but this crud....which I KNOW is directly related, because before that stressor to my system and the d....steriods...my life was ...uh...normal...anyway....how sad that a group who takes an oath to treat and care for people really for the most part only treat and care for what they perceive to be real and "credible"....