Discussion in 'Fibromyalgia Main Forum' started by Applyn59, May 30, 2003.

  1. Applyn59

    Applyn59 New Member

    I just read that lifetime is going to have a show
    on at 11:30 am May 31 (SAT) about actress Teri Garr and
    her diagnosis of MS. Thought it might
    be of interest to some of us.

  2. Shirl

    Shirl New Member

    Will check the tv guide and see if its in my area too. Will be glad to watch it.

    Shalom, Shirl
  3. upoemaker

    upoemaker New Member

    MS is decidedly a neurological diagnosis. I have lost several friends to this disease and while it might be interesting to people with fibromyalgia MS has no physiological relationship to fibro.
  4. Applyn59

    Applyn59 New Member

    Your welcome, Shirl.
    The reason I posted it (I am sorry-I forgot the last
    person's name already), it that there are members
    on this site who have MS or are going through
    a diagnosis of it. There have been quite a few
    people I have heard of who have been wrongly
    misdiagnosed either way.
    Since I sleep during the day, I will tape it I hope.

    PS Just what is that red icon towards the end
    of the emoticon line? An apple???
  5. upoemaker

    upoemaker New Member

    Sorry....I teach during the day and assume you work a night shift somewhere! My high school seniors sound like a constant TV, so I don't watch much.

    I just try as my primary goal to teach the best I can every day and I must admit that some of my efforts are not as strong as they could be. I just keep trying!!!
  6. Applyn59

    Applyn59 New Member


    No, I do not work at all. Am totally disabled due to
    severe back problems and FMS, among others. I can't get my
    sleep pattern on schedule. Although, even if
    I could, I probably wouldn't be awake that early

    No problem.

    PS.. High school teacher???Must be
    stressful in this day and age.[This Message was Edited on 05/30/2003]
  7. joannie1

    joannie1 New Member

    I appreciate you letting us know about this and I'm going to check into it. I have to disagree with the other post (Sorry can't remember who it was..) about these two DD out of no disrespect of course. But, I have been battling with what they figured to be Fibro for over three years and now I am in the process of the last test to confirm MS. I have done so much research on this and they are so darned close in symptoms that it was unbelieveable to me. I had no idea how much they run together with symptoms actually. So, I just want you to know we really appreciate you posting this to let us know about this upcoming show. Thanks so much.
  8. dd

    dd New Member

    Hi Lynn,

    I have already missed the show..UGH...I saw Teri Garr on a show about a year ago and she was asked if she had MS and she said no...that she had a very rare muscle disease. She even gave the name of the disease but I can't remember what it was. I think it was Oprah that I saw her on. Was she just recently dx with MS as opposed to the other dx I wonder???


  9. Jinx69

    Jinx69 New Member

    I have a severe case of CFS, and I have a friend who has MS. Our symptoms are so similar, it's frightening to know if one of us got a misdiagnosis.

    From what I know, MS varies in degrees, such as CFS. Not all people die from it.

    Thanks for listing the TV show. Perhaps they will rerun it. Lifetime TV has a way of doing that ;-)
  10. Combatmedic

    Combatmedic New Member

    Just wanted to say, to add to Joanie's post, and to also give you info that my GP (she's a D.O. not an MD, which, really isn't relevant, but....) said at my last appt.

    First, my doctor said, "one of these days, they will figure out that fibromyalgia, is just another form of Lupus or MS."

    Now, Terri Garr, she was just on Larry King a few months ago, and talked about MS, and was recently at an MS convention or conference (not really sure which word to use) anyways, she was a spokeswoman there and, at the end of her speech, I believe she reffered to MS as something like "this scum sucking disease".

    Oh, and like Joannie, I am going through this "MS thing", and have been for over a year now. I will be seeing an MS specialist at IU soon, due to symptoms, brain lesions (in two areas of the brain), and some abnormal neurological findings with reflex testing, as well as on the somatosensory evoked response test (SSER.)

    So, while the two may not be related, both are thought (just ONE of the many many theories) to possibly have a viral trigger, stress aggravates symptoms in both, etc, etc, and they can seem quite similar sometimes. Also when we are waiting for diagnosis, Lupus and MS are the big ones they try to rule out, before giving the FMS diagnosis. (In my case, obviously MS didn't get ruled out.) :-(

    So, at the least, MS is of interest to us, plus it gets way more funding for research, so, we're interested to see what treatments are being worked on----for instance, stem cell research, that can help many many illnesses.

    And, maybe people on the board just like Terri Garr-----LOL.

    Anyways, I try not to respond on here (or anywhere else) right now, as I am having some very bad cognitive dysfunction/confusion, for which I have even had 2 EEG's for in the past four months!

    Thanks for letting us know about the program, unfortunately, it's already 4:30 PM Saturday----LOL
    I'm always running behind. LOL

    Have a great day! (everyone)

  11. Applyn59

    Applyn59 New Member


    I am glad you thought the show was of interest.
    I, too, saw Teri Garr on Larry king. She was
    very upbeat about the whole thing and almost
    annoyed me! LOL!

    I don't recall hearing that she had something else,
    but that doesn't mean that it didn't happen.

    BTW, for people who have found out they do
    have MS, do you have FMS, too, or was that
    a misdiagnosis? There are so many overlapping
    symptoms it is astounding. Were you tested
    for MS to rule it out or because you had very
    obvious symptoms?


  12. Combatmedic

    Combatmedic New Member

    who have MS. Much like us fibromites, the MS'ers felt like she was blowing MS off like it was nothing more than say, a stuffy nose. They were *very* upset (I only speak for a few people I know from a support group---certainly not all MS'ers) by her appearance on Larry King.

    However, once they saw her at that convention or whatever, they were not so upset, and some changed their minds completely about her. Especially since she was visibly having a little trouble, and was cracking jokes, and talking about the disease. She also helped them raise money this year.

    As far as your questions about MS and/or FMS misdiagnosis, I can't really say yet, as I am not diagnosed, with MS, but, I am with FMS. My neuro *has* told me that this is probably MS, and that we have ruled differential diagnosis out, and that at my age, vascular causes for my lesions we not likely, though, not impossible, thats why I"m going to a specialist this summer.

    The lady on this board who has MS and fibro, has had MS since the 70's or 80's (I can't remember exactly how long, but over 20 yrs.)She was recently diagnosed with FMS.

    The reason I had my first MRI, was for headaches, and because my doctors could not find the cause of my severe nausea and vomiting (that lasted well over a year, closer to two.) She had tested me for lupus, but not MS. (However, I now have tests like ANA, that have been high, and others that have been low, and my thyroid is up and down). So, as the neuro probed into my history, checked my nerve impulses, reflexes, and then *especially after my diagnosis of Trigeminal Neuralgia, he became highly suspicious that this in fact may also be MS.

    I can say, that if I have MS also, I know it is still my FMS/CFIDS that disabled me, not MS. (those symptoms are mainly numbness, tingling, burning, brisk reflexes, absent right heel reflex, some visual probs but not optic neuritis.) It's the other stuff that disables me, the muscle, joint, and nerve pain, along with fevers, fatigue, cognitive difficulties, stuff like that, though, my legs are becoming more and more stiff with spasticity, and I'm on flexeril 4x's a day, which does not help, and I have fallen a few times.

    I will definitely say that the majority of the time it is difficult to know what symptoms are what, so I keep journal for the neuro. It's a combo of everything together abnormal tests, and the brain lesions, symptoms, and reflexes, etc, that point to probable MS.

  13. Applyn59

    Applyn59 New Member

    Hi Medic,

    Thanks for your detailed response. I know how hard
    it is to do.

    You sound a little like me. I am usually always very nauseated and went thru periods of time with
    daily vomiting, as well as diarhhea. I do have GERD and Hiatal hernia and had my gallbladder removed.

    Two years ago I was getting really bad temple headaches and facial pain. First, I had a sinus
    infection, which I never had or knew I had before.
    Only found this out because my tooth always hurt
    me. I went to the dentist and he said nothing was wrong but noted that I complained of this before
    and to check sinuses. I was put on antibiotics for
    about one month. I still had facial pain and bad
    headaches. I had a CT scan and it came back that
    infection was gone and everything was fine. I was
    not happy with this so I called an ENT. He looked
    up my nose and said I have two spurs in my nose and a deviated septum. I was also diagnosed with a rare disorder called Sluder's syndrome. It is facial
    tingling and pain and headaches. I would get nauseated with the headaches as well. People online
    thought maybe I should get checked for MS. I made
    BTW, the ENT was the nicest dr. I ever had and suggested surgery but didn't push it at all. I made
    an appt with a neurologist and it took several months
    to get an appt. By the time I went the headaches were
    better. I was really in a bad way emotionally and
    physically and was dumb enough to say something
    like my dr. gave me zanaflex(which is for MS) and
    acted like that was why I was worried. This, of course
    was not the case. My ENT did some preliminary
    balance tests and said I did very well. So, I
    have never had MS ruled out. I do have lots of
    floaters. Scripts change yearly, but that is it for
    eye problems. I also have no reflexes in knees and ankles.

    Good luck with your specialist and I hope you
    feel better soon. I have been nonfunctional for the
    past year due to extreme fatigue.

    Am glad I wasn't the only one who found Teri Garr
    annoying on Larry King. She did act like it was just
    a broken fingernail or something. Sometiimes seeing
    people like that really depresses me and makes me
    think that I am a baby.

    [This Message was Edited on 06/01/2003]
  14. joannie1

    joannie1 New Member

    Hi Lynn,
    I missed the movie and actually don't know if I am on the same time thingy as some of you are. i was wondering if you remembered the name of the movie so that I could check throughout the month. They often times play it over and over in our area.

    Another thing Lynn, with the Neurologist dismissing you, don't let them. I let these Doc's push me around for many years. To the point that a couple of months ago when i began PT my therapist told me she could see that I was very depressed and let down because of the medical field. I think I am very blessed due to the fact that my PT therapist seen me go through my flare for 6 weeks and it was her that did everything she could to convince me Neuro that this was NOT just fibro. When he did see me after her extensive tests were sent up and their discussion on the phone about me. he watched me walk and asked has anyone else noticed or commented about your instability before now? I said no, remember, I have "Fibro" most Doc's don't take us too seriously. He bowed his head a bit and said I do this time. Same Doc who treated me three years ago when it first began. So, what I am trying to say is keep trying to get your answers okay. We are very strong willed and i believe as long as you have to live with this, you must keep searching for either an answer or a cure for it.
    good luck and thanks for the name of the movies.
  15. Applyn59

    Applyn59 New Member


    It wasn't a movie. It was a half hour health program
    and Teri Garr was on it for about 3-5 minutes. I checked online for repeats and none are currently
    listed. You really didn't list much. They listed four
    symptoms, which seem pretty vague to me.
    Can't remember all of them. I think some were
    numbness and tingling and extreme fatigue.

    Good luck with your spinal.
  16. Applyn59

    Applyn59 New Member

    Bump for Joannie
  17. dhcpolwnk

    dhcpolwnk New Member

    I think I'm the person that Medic was referring to (below). I was diagnosed with MS in 1978 and with fibro in August 2002. I don't know whether there is a connection between the two, but there definitely are overlapping symptoms. Makes it kind of hard to figure out what to treat--especially if your neurologist shows absolutely no interest in fibromyalgia, or even in the fact that you--his MS patient--happen to have fibromyalgia, too!

    I didn't see Terri Garr on Larry King's show, but I know she's been participating in programs and fund-raisers for MS. She may have been making MS sound not too bad in order not to scare newly diagnosed people. And in fact, it is perfectly possible to lead a very full and rewarding life with MS--even with severe symptoms--though it's not always easy. It's also possible to have a fairly benign case of MS, thought that's definitely a minority.

    I remember reading a very good book about MS that was published around the time I was diagnosed. It was written by a newspaper reporter who had the disease, and while it pulled no punches, it reflected a positive outlook. I identified closely, since I was a journalist myself.

    I should have been reassured by the book. I expected to react that way, and to some extent, I did. But the book also depressed and scared me. It made me feel as if I would have to be some kind of superhero to cope--as if now that I had MS, I had to be better than ever in order to live up to the superhero standard. In fact, that hasn't turned out to be the case. But to this day, I don't know whether I would have preferred being told the worst-case scenario or the best-case scenario. I guess what I really wanted was just some realistic assessment of what I would be facing.

    I hope Terri Garr didn't make light of what MS can do, but I also wouldn't want her to focus on the most horrendous possibilities. In fact, given the right health and support services and with full enforcement of disability civil rights laws, most problems can be addressed successfully. The job I keep working on is to assure that those health and support services are available and that disability civil rights are recognized legally and enforced.

    --Laura R.M.
  18. Applyn59

    Applyn59 New Member

    Thanks for your insight. I can't imagine having both and being able to figure out what is causing what. I am amazed that you were able to get a diagnosis of
    FMS. Sounds like it would be impossible since so many without MS can't get diagnosed.

    I spoke with a woman who has both, but I don't
    f after she found out it was MS they discounted the FMS.
    This particular woman was quite happy to be diagnosed with MS. This was just two years ago so
    I imagine there has been much more advancement
    in treatment options. She felt that hers was caught
    early and was thrilled to have options available to help
    with the MS.

    Thank you for sharing your experience.
  19. Applyn59

    Applyn59 New Member