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    Think I've been diagnosed but not sure

    Hi all, I am new here. I've been to an emergency appointment with the neurologist today because I've had a blurry eye for 8 weeks that is now painful.
    he sent me straight to the eye doctors who diagnosed mild optic neuritis, I have 13 lesions on my MRI and ms symptoms.
    the neuro is sending me for a vep test and another MRI And has said if I have one new lesion or a positive vep test it is defo ms, if both come back negative he is 98% sure it is ms so I'm not sure if that is a diagnosis either way?? Just wondering what others think and does it sound like it is ms either way???
    Thankyou in advance xxxxx

    #2
    Hi Louise,

    Welcome! They use the McDonald criteria to diagnose MS. It requires evidence be both disseminated in time and space.

    Dissemination in space could mean lesions in two areas, such as the brain and an area of the spine (usually cervical, but could be thoracic or lumbar).

    Dissemination in time means that you had at least two relapses. If you had an MRI with contrast, and at least one lesion was active (lit up when contrast injected) and at least one other lesion showed that was inactive (didn't light up with contrast), then that could satisfy dissemination in time.

    If you didn't have contrast, or if you did and all were active or inactive, they can't tell if you had just one attack or more. So they would do another MRI and monitor. If a new lesion shows, then you would have your diagnosis, since the dissemination in time was satisfied.

    With the iptic neuritis and other lesion, it sounds like your neuro is pretty sure. But if he can't nedically satisfy the diagnostic criteria, he may have to hold off. If that's the case, he may diagnose CIS, Clinically Isolated Syndrome. This would allow for you to begin treatment with DMT that maybe would prevent another relapse and slow progression.

    Good luck. Let us know how you make out. The NMSS website has a lot of great information.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      Hello Louise and welcome to MSW. How are you doing? Have you gotten the test results?
      God Bless Us All

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        #4
        Thankyou for your replys sorry I've been busy, had my brain MRI yesterday and got to wait till October the 12th for my next appointment.
        ive started to get a really heavy feeling arm which feels cold on the same side as my optic neuritis which I am presuming is a bit of a flare up.
        i will post back when I hear anything xxx

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          #5
          I see this is an old post but maybe that doesn't matter. I noticed a mention of getting an MRI and having to wait till the next month for the next appointment. I'm assuming that's the neuro appointment? My son has a neurologist appointment a month from when he is supposed to get his MRI. Do they wait that long to give you the MRI details?

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            #6
            Originally posted by katrina111 View Post
            I see this is an old post but maybe that doesn't matter. I noticed a mention of getting an MRI and having to wait till the next month for the next appointment. I'm assuming that's the neuro appointment? My son has a neurologist appointment a month from when he is supposed to get his MRI. Do they wait that long to give you the MRI details?
            Hi katrina111

            It would not be unusual to wait until the next neuro appointment, to have the MRI results reviewed with the patient.

            That is how my neuro handled it when I had my first MRI.

            I sure didn't like the waiting at all.

            I imagine if there is something urgent to reveal, the neuro would call and arrange for an appointment sooner.

            Good luck!

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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              #7
              I always had to wait months between MRIs and appointments. Near the beginning, about a month would be a normal wait time.

              There recently was a post about someone getting MRI results on the day of the MRI, and I don't get it!! There must be drastically different systems in place at each hospital.

              Now I have my annual MRI in January/February and my 6-month neuro appointments in December and June. So you can see that I have a many month wait in between MRIs and getting results. It sucks, but I'm getting used to it.

              I really do think that the stress of waiting is often worse for your health the outcome itself. Stress can wreak havoc on your body. Recognizing it is one thing, then you need to learn to manage your stress. Easier said than done.

              A great book about how stress impacts you physically is "When the Body Says No" by Gabor Mate

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                #8
                I have online access to records and they are released to patients 72 hours after the ordering dr. is notified. Each med provider or facility has its own portal. It´d be worth calling your neuro and asking.

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                  #9
                  Originally posted by sarabeach123 View Post
                  I always had to wait months between MRIs and appointments. Near the beginning, about a month would be a normal wait time.

                  There recently was a post about someone getting MRI results on the day of the MRI, and I don't get it!! There must be drastically different systems in place at each hospital.

                  Now I have my annual MRI in January/February and my 6-month neuro appointments in December and June. So you can see that I have a many month wait in between MRIs and getting results. It sucks, but I'm getting used to it.

                  I really do think that the stress of waiting is often worse for your health the outcome itself. Stress can wreak havoc on your body. Recognizing it is one thing, then you need to learn to manage your stress. Easier said than done.

                  A great book about how stress impacts you physically is "When the Body Says No" by Gabor Mate


                  I had my results released to my patient portal that same day. When I heard on here about people having to wait months for their results I was amazed. I do think a lot of places of starting to have patient portals now to where the results can be posted for patient's to look at.

                  I really hope my new neurologist isn't a wait 6 month to see your results and also one who refuses to answer any questions I have. He had 95% good reviews online which is all I had to go by. But if I don't like him I have another appointment with a different new one a month later. If he is amazing I will cancel the second one so someone else can get that spot.

                  Comment


                    #10
                    I agree with Sara that people having a test want to know the results asap and it causes stress when they don't.

                    This post began over a year ago but it is relevant today because a lot of people are bugged about not knowing their MRI results on a timely basis.

                    The usual practice for years now is that my spouse has her MRI, doctor's appointment, and medication infusion immediately consecutive, one right after the other. The MRI at 8am, it is read, and the doctor has the results by her appointment at 9am. So we know the MRI results within an hour because the doctor needs them for the appointment just before her infusion.

                    At the 8am MRI I request a hard copy of the report and also a copy of the CD (this is in case we switch doctors we can take the copies of her MRI with us both of the written report and the MRI pictures which are on the CD.

                    My guess is that if the written report is request by you they are legally required to provide it. They may not give it to you the same day but certainly within a day or two at the most the MRI will have been read so the report will exist. I'm guessing they have no choice but to mail a hard copy to you immediately if you request.

                    Of course, most places willingly give you both a hard copy of the written report AND a CD if you request it. But none of them will if you don't make the request.

                    Good Luck Katrina111!

                    Kathy, your explanation above was perfection! I have always loved how simply and accurately you explain things. You are a gift. To me, genius is found in simplicity, not complexity. Taking something complex and making it simple requires talent. You have it. You are a very, very bright girl!

                    Temagami, thank you for encouraging the use of patient portals; this is the now and the future for patient access to test results, I believe.

                    Thank you for the book recommendation, Sarabeach!

                    Daisycat, here is hoping your new neurologist works out! Over the years I have found there is a startling difference between doctors. It is imperative to find one who will work with you and be conversational. Someone not in a hurry.

                    Lastly, I encourage you all to check out the Charcot Project thread. I honestly do not think there can be much doubt that EBV directly causes MS, or plays a crucial role in developing MS.

                    Yes, over 90% of us carry this virus and most don't get MS. However, Dr. Michael Pender's theory about the reason only some get MS is because of lack of immune surveillance by a particular group of cells (CD8). Pender is conducting a Phase 1 trial of his hypothesis and he is on the right track, IMO. The next 10 years will see amazing new treatments for MS emerge, IMO.

                    If you can, please listen to the explanation Pender gives. I provided a audio link in that thread... The Charcot Project.

                    This will be the future of treatment in MS, IMO.

                    Someday, we will all look back and say... "It was the virus, stupid". JMHO!

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