My doctors visit today..Not great News

Discussion in 'Fibromyalgia Main Forum' started by kalley167, Nov 16, 2005.

  1. kalley167

    kalley167 New Member

    Well if any of you read one of my previous posts I was concerned that I was being misdiagnosed with Sjogren's. Well after this visit with my new doctor I know for sure. She says my symptoms do not indicate Sjogren's, but they do indicate I am either in the early stage of Lupus or Mixed Connective Tissue Disease. Now from what I read it would be better to have SS but I needed to know for sure. So I know what I am facing and to be sure my doctor is treating me for what I have. I want to cry knowing but I wanted to cry more not knowing. Does that make sense.
    But until my symptoms present more we may not know which one, but she is leaning towards Lupus.
    But I least I know something and I feel as if she is looking deeper than any other doctor so far has done. My husband felt the same about her. She actually explained it to me and let me know that she believes me . It felt good.

    Now the sad part, I guess when you are sick you learn who your friends really are and I am doing that this day. I am friends with all I work with as we work in a small office, but one in piticular(spelling) was suppose to be my Best Friend,we have been friends for years. I have seen signs of her true colors for quite sometime but since I have been sick it has come out more. When I began with this whole drama ahe would comment that she is tired all the time too or she aches sometimes to. Or just act as if I was lying. Well today when I came in late after having to see my doctor, the other two girls made sure they stopped by my office to ask about my appointment. I have been back for several hours now and my so called best friend (ex now) has yet to ask. It's unbelieveable. I have always been a good friend to her, but this ends it for me.This was coming but today finished it. Maybe I am being harsh but I have had it.

    I thank all on here who have taken the time to read this post and any other I have wrote or replied to. I thank you for being my online friends. At least I can go somewhere.
  2. Bailey-smom

    Bailey-smom New Member

    it is like someone else posted earlier - she actually had someone tell her they had FM before. What?!?

    Some people just don't get it and never will. I know it makes you feel bad because you wish you had her to go to just to have a person to vent to or to have someone, other than your hubby, to cry on their shoulder but it is evidentally not her. Do not waste your pain on her at this moment - focus on feeling better.

    It has got to finally feel better to have a dr that is working well with you. She will get to the bottom of it and you will receive the treatment you need. You are in my toughts.

  3. suzetal

    suzetal New Member

    all the problems your having.

    Here is a quote from Abraham Lincoln

    If I have every other friend on earth,
    I shall at least have one friend left,
    and that friend shall be down inside me.

    Take care
  4. millennia

    millennia New Member

    My Husband's best friend told last night that he knows a good cure for Fibromyalgia. A good kick in the butt. That was just what I needed in the middle of this flare!!!
  5. smiffy79

    smiffy79 New Member

    hi kalley

    lupus is not the end of the world, the other two illnesses you mentioned i know nothing about but i do have a good friend who has has lupus for a long time.
    when it is not active it will not show up in your blood and when its active it will, it also affects any part of you it chooses, one day it will be like fm and the next it will affect your skin and so on.
    its like fm in that once you have learnt about this new enemy you will know how to deal with it.

    as for your friend ~ i dont know, could it be she just wants attention on her? dont chase her for anything but then if she does come to you dont be hard, there may have been a genuine reason?
    and if she does turn out to have been a troll then she cant bitch about you saying you were stroppy as then youve been anything but.

    all the best, smiffy
  6. winsomme

    winsomme New Member


    you might want to look into the marshall protocol which was developed to treat sarcoidosis - another auto immune disease.

  7. kalley167

    kalley167 New Member

    she says that the activity is low. So this is good. My FMS is acting up with the weather becoming so cold.
    I appeciate the replies all. It's good to know someone is there for me. I will be nice to my ex friend and not rude but I won't be going out of my way. I am trying to be the better person.
    I am ok right now since I am at work, maybe I will get a good cry in tonight. That will help.
  8. fivesue

    fivesue New Member

    You are experiencing one of the more painful parts of having these DD's. I, too, have lost dear friends, and it is because I didn't "just snap out of it." I know now they were not true friends, but that doesn't mean it doesn't hurt. It does...but it doesn't as much anymore. I don't have the pressure of trying to be someone I'm not and do things I can't. To me, that is a big relief.

    However, losing friends, especially ones considered "best," is very hard.

    Please take care of are a special person.

  9. Mikie

    Mikie Moderator

    I'm asking God to comfort you and that they will not find a serious illness.

    I have a friend with systemic Lupus and she is actually vastly improved from when she first was diagnosed. There are a lot more treatment options for Lupus and other autoimmune illnesses as well.

    Unfortunately, we sometimes have to let go of toxic relationships for our own healing. This sounds like one of those times. I'm sorry.

    Best of luck to you and God bless you.

    Love, Mikie
  10. karatelady52

    karatelady52 New Member

    You might want to have a Western Blot lyme test done by a good lab -- Igenex. Almost every article I read on lyme disease talks about misdiagnosis as ALS, Lupus, MS, FM/CFS, etc. Many Rheumys don't seem to know about this for some reason. Here's one article:


    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite. The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    Print Brochures and Flyers Here

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )
    Symptoms of Lyme Disease
    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you
    have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover

  11. kalley167

    kalley167 New Member

    for your support and friendships it means alot to me right now !!
  12. PepperGirl52

    PepperGirl52 New Member

    So sorry for the diagnosis. Like you said, now you know and can face it head-on.

    We all find in this life of chronic illness that some people just can't deal with their 'friends' having it. They are torn between pity and frustration, and most, sadly, choose to just go their own way and not be burdened by us. Those who are your TRUE friends will rally and be there for you!

    Try not to let her get you down. You have way too many other things that are more important right now to deal with. Your health and well-being have to come ahead of her pettiness. If she doesn't come around, it will be HER loss.

    We are here for you-don't forget that, ok?? God bless you! PG
  13. jimbbb

    jimbbb New Member

    Following on to what karatelady mentioned about Lyme being commonly misdiagnosed as any number of other diseases. The (Bowen q-RIBb) titre is a really accurate one (much more so than even Western Blot or others) for Lyme/borrelia (it is also less specific -- not for just one type of borellia specified as 'Lyme'). Also if it shows antobodies at high dilution rates (128) or any other fairly high rate, then it will give you a dead on method for determining if any treatment you select is actually doing something (if the dilution rate starts to drop or not). Often Lyme patients go on antibiotics for a long time (years even) and it doesn't put a dent it the dilution values which indicates that the particular treatment ain't working. As winsomme mentioned, coupled with the Marshall protocol you might have an objective measure of the disease and a method for knocking it down (and it is not very important WHAT the particular version of auto-immune disease you have -- just that you have one). That makes life simpler where you can quit getting any more diagnostic tests and just get on with a cure.
    Good luck in gettin better ...
    [This Message was Edited on 11/20/2005]
  14. PVLady

    PVLady New Member

    I am sorry your former friend treated you like she did. The sad thing is, when we are sick, we need a friend more than ever. So when you needed her the most, she chose not to be there for you.

    I would imagine, you would never do that to her, (or anyone else). Sadly, some people are just too self centered and not capable of having compassion for others.

    Please believe, you will make many friends here. Even though it is on this board, we have many genuine good people here.

    Remember the old saying "with friends like her, who needs enemies" - She doesn't deserve a good friend like you.

    I pray a new "good friend" will come into your life.

    [This Message was Edited on 11/20/2005]
  15. rmc20021

    rmc20021 New Member

    I'm really sorry you have to go through the loss of a friend. I lost my best friend of many years also. She became downright mean to me...once even asked me if I was gonna live, and not in a concerned manner. It was very sarcastic. And I can totally relate to others saying they feel the same things. I guess they think that if they let you know they feel what you're feeling and can still go on with their lives that you should be able to also. They just don't realize the true capacity of the levels and types of pain that we suffer day in and day out. Hope things get better for you.

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