FEW QUICK QUESTIONS ABOUT YOUR CFS

Discussion in 'Fibromyalgia Main Forum' started by FOYBOYFOY, Aug 14, 2006.

  1. FOYBOYFOY

    FOYBOYFOY New Member

    THANKS FOR YOUR TIME-JUST A FEW QUICK ONES:
    1. HOW LONG DID IT TAKE TO DX YOUR CFS
    2. HOW MANY DOCTORS DID YOU SEE(TOTAL)
    3. WHICH DOCT DX YOUR CFS(ie rheumatolist)
    4. WHAT ELSE WERE YOU DX WITH BEFORE THEY FIGURED OUT YOU HAD CFS
    GOD BLESS AND HAVE A GREAT DAY FOY
  2. foggyfroggy

    foggyfroggy Guest

    1. about 6 mo.
    2. 4 I think including a Neurologist and a couple of emergency trips.
    3. None, I was given a book by my mom who saw it in passing at Borders and I saw all my symptoms in it. My PCP responded by saying (over the phone when I called to ask if I could have CFS "well, you might but there's nothing we can do for that")
    4. A 'virus'.

  3. rigby

    rigby New Member

    1)2 years 2) about 10 3) I was working for a home health agency I did my own labs then finally took them to someone who knew about CFS( internist) and he did a few more test and he sent me to a Rheu. to rule out Lupus still not sure about Lupus they continue to keep a eye on it. I now just have my PCP who works with me. 5) they kept saying I had mono
  4. shell

    shell New Member

    1. 1 1/2 years
    2. about 8
    3. infectious disease doc
    4. Fibro
  5. Cromwell

    Cromwell New Member

    1. The dx seems to vary between docs over the past 12 years and so I can say they really go so up and down on this I would say, many years

    2. I must have seen at least 6 doctors this past year(all different specials)

    3. Strangely, this year, ALL of them!!!

    4. Lupus(still may have that) Lyme, trapped nerve, RA, arthritis, overwork, all in my head, all in my head, all in my head.

    My dx started in UK with a dx of ME which was trashed all over the place when I came to USA as no such disease(NSD)

    Love Anne Cromwell
  6. Tantallon

    Tantallon New Member

    Hi Foyboy

    1. 4 years (was diagnosed with FMS first)
    2. One and two neurologists
    3. My doc gave me the diagnosis (I knew what I had but was wanting him to diagnose it on his own bat)
    4. M.S., Fibro, and recently as well as M.E. he thinks I might have M.D. (doc thinks I have this because of my walking ability and reflex probs. So once again waiting to see a neurologist. I don't agree with him though, good job I'm not a worrier!

    Sue

  7. Scapper

    Scapper New Member

    1) It took one year to be officially diagnosed but I knew during that year that it was CFIDS. A nutritionist diagnosed me before my seeing an M.D.

    2) I saw 2 M.D.'s that first year.

    3) Official dx was from an Internist, specializing in CFIDS

    4) Before getting official dx, I was given anxiety medication from a clinic but I knew it was CFIDS after about 6 months or so. I was a very stereotypical case. Sudden flu-like onset, extreme debilitation, etc., so there wasn't much room for "it's all in your head" or I didn't buy into it since my body was exhibiting severe physical symptoms.

    Hope this helps you in some way :)
  8. barbinindiana

    barbinindiana New Member

    1. My GP suspected it in the first two months, but was diagnosed about 1 1/2 years later by a neurologist.

    2. Five

    3. See #1

    4. Mono

    Barb

  9. KelB

    KelB New Member

    1, 2 & 3:
    - "Post-Viral Fatigue" diagnosed at 4 months by GP
    - Working diagnosis of CFS by Gastroenterologist at 4 months
    - Confirmed as CFS by Rheumatologost at 6 months.

    4. Started with balance problems that were diagnosed variously as labyrinthitis and vertigo over the course of 2 months.
  10. harrysmom

    harrysmom Member

    Hope this helps -

    1. Took about a year to be diagnosed

    2. Saw an internist, neurologist, rheumatologist, pharmopsychiatrist

    3. After having tests to rule out MS, RA, and lupus aand hepititis C and after I read Dr. Bell's book on CFS the internist and I came to a joint conclusion that I had CFS which she had constantly told me she hoped I didn't have because it was not curable. A few months later the rheumatologist concurred with the diagnosis. that was 10 years ago.

    4. Prior to the CFS diagnosis I found out I was hypothyroid, had an anxiety disorder(which just got worse with the CFS) and was constantly sick with sinus or respiratory infections (I was an elementary school teacher for nearly 30 years at the time)

    Hope this helps your information gathering.

    Harrysmom
  11. suzetal

    suzetal New Member

    My GP diagnosed CFS.

    My rheumy diagnosed the FM 4 yrs ago.

    I had FM first nothing else that I know of.

    Sue
  12. KMD90603

    KMD90603 New Member

    1. I was diagnosed in 2004, approximately 7 years after my symptoms began. My illness dates back to having mono at the age of 15. However, I didn't seek help for it until 2003. I just thought it was normal to feel like garbage once you've had mono.

    2. I saw 5 doctors: my internal medicine doctor, a rheumy, a neurologist, an endocrinologist, and an infectious disease doctor.

    3. The infectious disease doctor diagnosed me with CFIDS.

    4. I was originally diagnosed with fibro after seeing the rheumy. However, pain has never been much of an issue for me. The only time I get real bad pain is when the weather is bad or when I'm running a fever, which I often have with the CFIDS.

    Hope this helps. Gentle hugs to you,

    Kim
    [This Message was Edited on 08/14/2006]
  13. tansy

    tansy New Member

    -3 months polyneuritis complicating a viral infection: neurologist.
    -4 months Dx of Post Viral Fatigue syndrome: haematologist.
    -1 year Dx of ME: general physician in private practice (UK) who recognised the classic signs and symptoms.

  14. pepper

    pepper New Member

    Here are mine:

    1. Diagnosed immediately - I gave my GP a list of my symptoms, thinking that they were not at all related, and he said, "I think I know what you've got."

    2. I have seen many doctors after the dx, a total of 4 for CFS specifically.

    3. My GP diagnosed me.

    4. He diagnosed me with mono 1 1/2 months earlier but the disease morphed, ie. excessive sleeping turned into inability to sleep.

    Pepper
  15. Michelle_NZ

    Michelle_NZ New Member

    1. HOW LONG DID IT TAKE TO DX YOUR CFS

    About 5 months, but I had to dx myself first then find a Dr who would be able to confirm it.

    2. HOW MANY DOCTORS DID YOU SEE(TOTAL)

    Honestly, I'm not sure, about 5

    3. WHICH DOCT DX YOUR CFS(ie rheumatolist)

    A GP that "specialises" in CFS and Fibro - I found her on the internet, shes dx over 2000 people.

    4. WHAT ELSE WERE YOU DX WITH BEFORE THEY FIGURED OUT YOU HAD CFS

    The Drs kept asking me if I was depressed, then continued to tell me there was nothing wrong wtih me, when clearly there was.

    Take care
    Michelle
  16. UnicornK

    UnicornK New Member

    1. 20+ years

    2. Lost count years ago

    3. Pain management specialist

    4. FM (MPS), bi-polar, diabetes, degenerativw disc disease, facet arthrosis, arthritis, herniated discs, etc., etc.

    God Bless.
  17. gracepartaker

    gracepartaker New Member

    1. about 1 year
    2about 6 to rule out many things - lupus, heart disease, neurology It was a very frightening time and I grew weary of all the doctor visits. It was actually a relief to get a diagnosis. Eventhough I had already figured it out
    3 Infectious disease dx
    4 Psychosomatic Disorder (it's all in my head) I'm a psychotherapist so that one was funny anemia