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  • Has anyone had an MRI and still had MS?

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    Old 08-21-2005, 09:12 AM   #1
    yankeegal
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    Has anyone had an MRI and still had MS?

    Hi everyone, I got my results of my MRI and they were normal. But I still have the same symptoms. I have the dizziness and the neuropathy in my hands and feet which the doctor put me on neurontin. I forget things all the time I mixup words. I am shakey my arms just about killed me for two days I stayed in bed. MY legs and arms have pins and needles all the time. I get this pain in my head and the back of my neck. Has anyone else had a normal MRI and really had MS? I am really tired of this now. Thank you for taking the time to read this.

     
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    Old 08-21-2005, 09:51 AM   #2
    Mickey32
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    Re: Has anyone had an MRI and still had MS?

    Hi. It is possible to have a normal MRI and still have MS. Did you have a Spinal Tap yet? That will probably help in confirming a diagnosis. But unfortunately it could take years to get a diagnbosis because MS is a difficult disease to diagnose. Don't get discouraged though. IF I were you I would see an MS specialist. Good luck.

    Mickey32

     
    Old 08-21-2005, 02:06 PM   #3
    yankeegal
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    Re: Has anyone had an MRI and still had MS?

    Hi Mickey, thankyou for the answer. No I have not had a Spinal Tap I have to see my neuro in Sept. and I really don't know what he will do. He said there was no sign of MS on my MRI does that mean that is for sure? I have so many symtoms I am at the end of my rope. Thankyou for the advice on a specialist I will look into that.

     
    Old 08-21-2005, 02:19 PM   #4
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    Re: Has anyone had an MRI and still had MS?

    I got a phone call from my neurologist and he said " your MRI is clear... you do not have MS." I had a follow up appt. a few weeks later and as I was steadily declining he refered me to the MS specialist in that office to see the likelyhood of a clear MRI and still having MS. I said screw it and went to my brothers neurologist for a second opinion (My brother has had MS for 9 years.) Unsure of what exactly was going on he shot out a few neurological disorders that it may be, but didnt hesitate to start treating the symptoms in the meantime. I was on IV solu medrol 2 days later and then prednisone. I ended up having the spinal tap after blood work ruled out Lyme etc. The LP came back positive for all the things that indicate MS. Needless to say I started Betaseron 2 days ago. I knew 6 months ago that I had MS. It was just this feeling I had. I wasnt going to let anyone tell me differently and not do anything about all the things that were happening to me. My first neurologist probably wanted me in a wheelchair before he did anything about what was going on... everything was just "ver interesting" to him. Like my new neurologist said " You gotta know when to fold and when to draw!" As I have been told...lesions can hide or they can be so small that they are undetected. My neurologist said we are probably dealing with lesions less than 1mm in size. But to wait for lesions to show up on an MRI seems foolish. The smaller they are, the better... and starting treatment that early in the game seems like I/ we have a better chance at prolonging the progression of this disease. I would definetly seek out an MS specialist and get an LP scheduled. The sooner you get a diagnosis and start on treatment... the better! Good luck to you!

     
    Old 08-21-2005, 03:35 PM   #5
    evolution88
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    Re: Has anyone had an MRI and still had MS?

    It's amazing the number of people who have one attack and decide not to use any treatment. I guess maybe it depends on how severe the attack was. My first known attack landed me in the hospital, and the MRI showed multiple >5 <10 lesions.

    I went on Tysabri (Hopefully it'll be back), then Avonex. One MS specialist at Mayo clinic told me about 50% of people in my position (lesions and one known attack) go on treatment, the other 50% do not.

    It's just a guess, but I think that the people who are here on this board are probably the people who have worse cases on MS. Those seeking advice and help since the MS is worse. Those who have mild cases probably never even look into forums like this.

    I have to agree with curious though, the more you can do, the sooner, to prevent accumulation of MS is good.

     
    Old 08-21-2005, 05:17 PM   #6
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    Re: Has anyone had an MRI and still had MS?

    Yankeegal, it frustrates me terribly that you can go to 10 or 20 web sites and find the standard diagnostic criteria for MS, yet you can PAY (for some of us, pay quite a lot) to see a neurologist and some of them DON'T KNOW THE CRITERIA!!!
    This was not my experience, I am blessed. But here is what is common knowledge:
    MS is diagnosed or ruled out on the basis of SEVERAL tests (not just one test). MRI. Evoked Potentials, LP (spinal tap) and clinical presentation. There is, and has been for a while, a "formula" of sorts that takes into account the various combinations of positive and negative results from ALL the tests. In addition a responsible physician with doubts would order blood tests and whatever other tests were necessary to rule out other conditions that can mimic MS (Lyme, Lupus, Fibromyalgia to name a few).
    As I said, I am blessed. My neuro did not suspect MS when I first saw her, but she ordered the MRI (with and without contrast) and nerve condution tests (similar to evoked potentials). My MRI had small lesions, so she promptly changed the nerve conduction tests to evoked potentials (came out BETTER than normal!) and an LP, along with full blood work. After the evoked potentials and blood work she STILL didn't think it was MS (but had ruled out the other sutff). Even after partial results of LP she didn't think so. But when all results were back from LP (3 tests on ceribrospinal fluid, 1 negative, 2 positive) and consultations by my neuro with other neuros I apparently "squeaked in" and met the diagnostic criteria.
    I have no complaint about paying a neuro who seems to want answers as badly as I do.
    Hmmm, seems I jumped on a soapbox there, sorry. I just want you to know that you are the boss of you, not a particular neuro. If the one you are seeing seems not to take you seriously, find another.

     
    Old 08-21-2005, 06:06 PM   #7
    yankeegal
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    Re: Has anyone had an MRI and still had MS?

    Thank you all for your replies it makes me hopefull that I will find an answer to whatever is happening to me. I was going to get a second opinion because I really don't like this Neuro much. Do they usually order an LP after an MRI? Maybe that will show something. I am glad to know that people have had experenices like mine and clear MRIs and still had MS, I really feel awful somedays and good on others. Well thank you for listening and answering my post

     
    Old 08-21-2005, 06:19 PM   #8
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    Re: Has anyone had an MRI and still had MS?

    Yankeegal, I would request a copy of the MRI report. My MRI came back "normal" as well but, when I read the report it stated "1 lesion with a few flares in the white matter". To me that doesn't sound "normal".

    The neuro said he doesn't think MS but then my PCP feels that the MRI was inconclusive along with all the other sx I've got. So, to neuro #2 in Sept.

     
    Old 08-21-2005, 06:23 PM   #9
    lilc
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    Re: Has anyone had an MRI and still had MS?

    Good advice, revlcb. This last appt my neuro told me 4 or more lesions is indicative of MS. Mine are quite small, but in the end it was determined there are 6 or 7. The initial reading, however, was completely inconclusive.

     
    Old 08-21-2005, 07:17 PM   #10
    yankeegal
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    Re: Has anyone had an MRI and still had MS?

    Thankyou for the advice and I will do that. Everyone has been so helpful to me. I really don't feel alone.

     
    Old 08-21-2005, 07:52 PM   #11
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    Re: Has anyone had an MRI and still had MS?

    Good point lilc... I would definetely get a copy of those MRIs and bring them to the 1st appt. you have with the new neuro. That is what I did and it proved to be helpful! The radiologist who read the MRIs and did up the report missed what may be a lesion in the central portion of the brain. So when the report was sent to my 1st neurologist he took that persons word for it and never actually saw the MRIs. If he had, he may have picked up on what my new neuro did. A potential lesion. Good luck...

     
    Old 08-21-2005, 09:37 PM   #12
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    Re: Has anyone had an MRI and still had MS?

    Quote:
    Originally Posted by evolution88
    It's amazing the number of people who have one attack and decide not to use any treatment. I guess maybe it depends on how severe the attack was. My first known attack landed me in the hospital, and the MRI showed multiple >5 <10 lesions.

    I went on Tysabri (Hopefully it'll be back), then Avonex. One MS specialist at Mayo clinic told me about 50% of people in my position (lesions and one known attack) go on treatment, the other 50% do not.

    It's just a guess, but I think that the people who are here on this board are probably the people who have worse cases on MS. Those seeking advice and help since the MS is worse. Those who have mild cases probably never even look into forums like this.

    I have to agree with curious though, the more you can do, the sooner, to prevent accumulation of MS is good.

    I am one of those people that has had only one attack and no other symptoms except for ON and the lesions. As soon as there was a thought of MS...I immediately sought out information and support. But you are right, not many people are as aggressive as i am. Knowledge is power, and since I control my health, i wanted lots!! I am so glad I found this board and all of the wonderful people that post here.

     
    Old 08-23-2005, 11:34 AM   #13
    yankeegal
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    Re: Has anyone had an MRI and still had MS?

    thanks for the advice and I am going to get a new Neuro. Does anyone's arms feel so sore that you don't want to move them? Mine feel this way alot and I was wondering if that was a sympton of MS. I am so tired of feeling this way people look at me and say well you look ok and I say to them I may look ok but I don't feel ok. Why is it so hard to get a doctor to believe that we are actually sick. I have never felt pain like this before and the burning in my feet is awful. I still have pins and needles even with the Neurontin. I pray better days are ahead. Thank you for letting me vent.

     
    Old 08-23-2005, 04:08 PM   #14
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    Re: Has anyone had an MRI and still had MS?

    yankeegal, how much neurontin do you take each day? My neuro started me at 100mg, then 200, 300, 400, about to go to 500. She feels it can make the symptoms go away altogether. It definitely is helping me.

     
    Old 08-23-2005, 06:42 PM   #15
    yankeegal
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    Re: Has anyone had an MRI and still had MS?

    I take 300mg 3x aday but it really doesn't help alot I can still feel the pins and needles and the burning in my feet. My arms feel like they want to fall off they hurt so bad. But it's like I said I pray for better days I really hope they will find answers to what's going on with me. Thanks for reading my post

     
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