MRI results today...

Discussion in 'Fibromyalgia Main Forum' started by joannie1, May 27, 2003.

  1. joannie1

    joannie1 New Member

    Well, i have returned from the Neurologist and all the tests came back okay except for the MRI. It is showing abnormality of the brain. He didn't go into detail but said that now he wants a spinal tap for the levels of my spinal fluid. I am having a difficult time with this doing this due to terrible experiences with past epideral injections. The most upsetting thing to me is the fact that whether it be MS or Fibro your substance P level is elevated with both of these. So, why I need a darn spinal tap I don't know. i am thinking of just cancelling it and saying to heck with it. the most upsetting this is when he said with the brain MRI and the symptoms I would say you've had MS for the past ten years or so BUT we need to be sure with another test.

    Grrrr.
    Love,
    Joannie
  2. nigelmchale

    nigelmchale New Member

    only 10 years for themto get around to a supposition, not bad !!!...
    can understand how p***d off you must be but glad to see ur still fighting and willing to make your own choices..
    good luck n sock it to em gal.
    ciao
  3. goingslowlycrazy

    goingslowlycrazy New Member

    Aaaaaaw honey, I'm so sorry that you're going through all this...

    but there is a tiny glimmer of hope here.

    IF this doc is right and you have had MS for the past ten years, then you have already been living with it. All he is going to do is put a name on it.

    I know that getting a name for what we are suffering for is a big step and can have an impact. But in this case, you may find it has a more positive impact than the fibro diagnosis did.

    There are meds available for MS and people seem to 'accept' it as a 'proper' illness.

    I'm going to shut up now, because I don't want you to think that I'm trying to cheer you up with empty words. This must be devastating for you and your family and I am in no way belittling that.

    I truly wish I could make it all go away, for you and for all of us - but, failing that, we are all here for you, always,

    gentle hugs and sympathy,
    Mary xxx
  4. Applyn59

    Applyn59 New Member

    Hi Joannie,

    I believe spinal fluid is needed to confirm diagnosis
    of MS and they will be looking for a few things including antibodies, myelin properties, etc. Try to remain
    calm. You will soon be on the road to the proper
    treatment. I know it's easier said then done.
    I also hate anything to do with spinals - closest
    I came was a myelogram and epidurals.
    Good luck!
    Lynn
  5. JaciBart

    JaciBart Member

    In that with a different diagnosis you can possibly have more understanding from family, friends, society in general.

    Unfortunatly it seems to me like a lot of people think I am just lazy. I used to be like all the rest of you in a very rewarding career, was type A who always could do anything and everything better than anyone else, my hubby and his family however never got to really see that side of me, it seems like a long time ago now but we are shunned by society.

    Also with another diagnosis you may have access to better and different meds that may help you to do better, in my understanding MS does go into remission and that would be wonderful.

    I have often hoped for a different illness and almost anything else is better accepted, it is hard to live wiht this and keep our self esteem.

    I know you are the one going thru it, not I and I would be apprehensive too about he spinal thing, if it helps to know this you will be in all of our prayers.

    Jaci
  6. anniegetyourgun

    anniegetyourgun New Member

    Seems that epidurals are familiar to quite a few of us... I just had a cortisone epidural and am wondering what kind of epidurals have caused problems for some of you...
  7. joannie1

    joannie1 New Member

    I wanted to tell you all how much I appreciate your support and your prayers. I am really having a hard time with the fact of another needle going into my spine is all. I am just very concerned with it. My luck with med. procedures is not good is all.

    I know that we all would rather have a more recognized disease and more socially exceptable then fibro. I too feel the same way but what if it isn't is my ordeal I am fighting. Another procedure with the possability of problems with it. That is my biggest fear is all.

    Thank you all very much.

    As for the epideral question. I have three all with cortisone. The first one I passed out and began falling with the needle in my spine. The last left me with damage to the nerves to my bladder. To me I wouldn't wish them on anyone. had three though for child birth with no troubles before I came down with all of this.

    Love,
    Joannie
  8. kredca4

    kredca4 New Member

    I tell you this Not to scare you, but to maybe help you get through it better than I did.
    In 1984, I was having problems, and my Orthopedic Dr. sent me to a Neruologist, well he did a Spinal Tap, it was my 4th one during my Lifetime, (so far).

    I have never had one go right. Before, when they did them, I was at least in the Hospital, but with the last one, they made me leave an Hour after the Tap. Which did not go well, took them 4 or 5 shots, and it still didn't deadend my Back, The Doctor had to try 3 times before he could get a Draw of Spinal Fluid.

    I laid down in the back seat of the car on the way home, but I still ended up Flat on my back, for 3 Weeks, the Holes would not Heal, and everytime I got up, I would have an instant Headache, right across the forehead at the eyebrow level. I was suppose to use a portapotty and have hubby dump it when he got home, I just couldn't do it, so I cralwed to the bathroom thinking that would help avoid the headache, it didn't.

    I even had my first Anxiety attack around this time, and the Weird Rashes, so I think that 's when the FMS really started to kick in, but not as bad as it did in the 90's.

    What was the dx? Well all the Neuro said to me was Don't Drink it'll kill you. No other problem showed up, except for the fact that there was to much Protien and Blood on the Spinal Fluid. No one treated me for it, said that I must have had a "Mini-Stroke", so who know's?

    Well I won't have another, so far, I have been lucky (?) that most of my Problems show up with the MRI's and other Test's.

    Good luck to you, I wish you didn't need to do this, you sound so much like me, I also won't let any Dr. put a needle in my back now, if they start talking Epdurial's I walk.

    Sincerely
    kredca4/sharon
  9. goingslowlycrazy

    goingslowlycrazy New Member

    No wonder you're so worried - I would be too after that catalogue of disasters...and I completely understand why you don't want another one.

    You just have to do what you feel comfortable with honey and if they don't like it...tough!

    sympathetic hugs
    Mary x
  10. momkatmax

    momkatmax New Member

    Make sure that you get another opinion just to be on the safe side. Some of the "abnormalities" can be artifacts.

    And sending good thoughts and prayers that all will be well
  11. dd

    dd New Member

    After all you've been thru I don't blame you for being anxious about a spinal tap...but maybe they can give you a proper dx once and for all.

    I have had a few MRI's for various reasons and one time they really scared the he.. out of me. I was told that they had seen a Chiari or a Syrninx sp? on my spinal cord. When I asked what that was I was told that it is a disease of the spinal cord that would put me in a wheelchair for the rest of my life. Well, it turned out not to be that...Thank GOD but they did finally figure out that the fluid was from a condition that I had from some bones under my ears that had calcified. I had surgery to remove the calcified bones and my MRI's have been fine since...except for the lesions that were there previously from what they think was a mini-stroke about 8 years ago.

    I will say a prayer for you that all turns out okay. I know it's hard not to worry though. May the Lord give you peace and comfort.

    Love,

    Debbie

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