I deleted my own post.. I am losing it!!!

Discussion in 'Fibromyalgia Main Forum' started by joannie1, May 21, 2003.

  1. joannie1

    joannie1 New Member

    I don't know what has gotten into me lately. I have been so sad because I couldn't believe none of my friends posted only to find out I must have deleted the first post.

    I wanted to let everyone know that I am finally getting somewhere, or so I hope. I had been in physical therapy for the past six weeks with a wonderful PT therapist that the first neuro I seen and ( he upset me)had sent me to. She over the first four weeks seen how my flares and migraines effect everything about me. She decided on her own to do coordination and balance testing on me. She had papers she filled out and how to rate these things on me. When I was finished an hour plus later she said this really concerned her and she would be contacting the Neurologist. The sheets she had helped her to know what to look for and how to grade you on this. 0 is poor 1 is okay 2 is good. She said her biggest concern was that I have never been tested for MS and other progressive disorders. In her findings I had scored almost all 0's and she and was afraid of me walking without an assisted device. She said I am going to see to it that you are tested for everything because in my opinion this is not just Fibro you are fighting. I have treated many fibro patients and this concerns me. She went on to tell me that she was very close with the neuro and most all of the time that she calls him with a problem he takes her very seriously. And he does not just sluff it off. She said I would rather them find out now then when we can't help with the walking at all. She was at awe to know there has been no testing of the sort done on me before this too.
    Sure enough the Neuro took her seriously because the day she called him he must of hung up and called me right then. My appointment was scheduled for an extensive visit with him to go over everything with me. When I seen her before the appointment she went over everyone of my symptoms from my vision changing all the time to my weakness and fatigue to my bladder problems and everything. She said now go home and do this list of everything you can think of and give it to him to put in your med file. And you come here right after your appointment so I know if he took me seriously.

    So, when I went in I had an entire exam and he was shocked to say the least. I had seen him when all this had first began in 2000. He said Joan you need tests, for one a brain MRI, you have progressed so much it is in both legs and pretty bad ha. He asked had I not told anyone or had they not noticed it before? I said I have told them they don't seem to listen so I deal with it. He said well, I am going to get you figured out. he began rattling off test after test. And he said nobody has treated this restless leg you have? I will, you don't need to live with this he said.

    So, I have a brain and thoratic MRI on friday which he said would cover the cervical too but not the added expense with it.thankfully.. And I have blood tests from diabetes to iron to muscle diseases to rhuemo diseases to cbc to electrolytes you name it I am being tested for. I return to him on this coming Tuesday and I am praying for something to help with the migraine pain and body discomfort. I went to see my PT therapist and we both about jumped for joy, well, I can't jump but we were happy. She said Joan, I have listened to you and have believed you since the day you came to see me and I told myself something needs to be done. She is concerned about MS I think. But as I have said I can live with it, I know I can. I have this long it is living without not knowing or having the right med treatment is what breaks a person down the most.
    I just keep thinking here I have been sitting for months wanting to just die because I have not been heard it seems by anyone but there is someone out there that will listen it is just finding that compationate soul in the med field. So, don't give up even if you feel you can't keep going like this.
    It has been a heck of a long week but I know tomorrow is another day and it is worth getting through this one to find out if tomorrow will be better.
    Take care all and God Bless.
    Joannie
  2. Applyn59

    Applyn59 New Member

    Hi Joannie,
    I don't know you but your message was so great to read. It is so great that you have found someone who
    truly cares about you and wants to do everything in
    her power to help you! It is so difficult to find caring
    drs who will perform all sorts of tests, etc.
    I spoke to one woman who had FMS and later found out it was MS and she was actually grateful. She said that
    in her opinion since the MS was caught early that there
    were better meds to help her than for the FMS.
    Symptoms are similar and I guess MS needs to be ruled out. I never had it ruled out but you seem to have
    different symptoms than I do.

    Anyway, I just wanted to wish you luck with all your tests and hope that this leads to a good medical plan that
    will help you with your symptoms.

    Lynn
  3. PatPalmer

    PatPalmer New Member

    So glad you are being taken seriously now and please let us know how things progress, good luck.

    Love Pat.
  4. Princessraye

    Princessraye New Member

    Sad to say but I am glad someone is testing you ! Seems hard to get some Dr.'s to take these symptoms seriously and I believe you improve when you know exactly what you are dealing with.
    I look forward to hearing your results and the treatments they decide on.
    If you have MS, I know a couple people with it and they are doing very well despite their challenges.
    My best to you.
  5. Dorothy45

    Dorothy45 New Member

    I hope you keep us updated. My thoughts and prayers will include you. I'm so glad that you have found a doctor that has taken an interest, and wants to help you. Good Luck!
  6. ForeverFlaring

    ForeverFlaring New Member

    I am sorry to hear about the MS. I too have alot of symptoms of MS. I am only speaking or myself but as sad as it may seem I think I would like to be told finally that I do have it so I will feel "justified" in my complaints.

    I am sure you have mixed feelings about it. I am also sure you are so happy that finally someone is paying attention. It is truly a shame that all of this time spent going from doctor to doctor was fruitless and a physical therapist has to be the one to pay attention. That angers me more than I can express right now.

    The one good thing about all of this honey is that it will help in your battle with Social Security, and for that I am so very happy for you!

    Keep us updated on your progress and you will continue to remain in my thoughts and prayers.

    Sandy (FF)
  7. goingslowlycrazy

    goingslowlycrazy New Member

    Thank goodness for that lovely therapist - she has really opened a door for you now, to get the help that you need.

    I'm so glad and hope you can start to get somewhere now.

    Please let us know how your tests go and how you are - we're all rooting for you!

    big hugs
    Mary x
  8. joannie1

    joannie1 New Member

    I truly appreciate it so much. I was sooo sad thinking nobody remembers me because I have not been on much due to all the problems I have been having. Only to find out I deleted the darn post myself. Not functioning all too well I guess somedays.

    Forever flaring I want you to know that I had no idea of anything about MS until a few months or more back I posted about my gait and did anyone else have problems with it too. I believe it was Jellybelly who posted something to the effect that that was how they discovered it with her Mom was from her gait. I think I have that right, not sure. Anyways i didn't think nothing of it. But here recently a Doctor I had seen in my Doctor's practice had said I needed a Neuro because my symptoms were somewhat symptoms like MS. Then my PT therapist mentioned the fact that MS had not been ruled out. So, I do not know if I have it, can't say for sure but we will know more come Tuesday. The meds I am on though for my restless leg is used for parkinson's disease. That is what the pharmacy paper said so who knows what is going on.

    Thanks everyone I appreciate it and I will let you know what I find out too okay.
    Take care and God bless.
    Joannie