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    At a Loss

    I was told by a Neurologist that I have MS. So I got another opinion with a second Neurologist who says that my lesions are too small to be MS and are caused by my migraine headaches. I have 5 lesions 3-6mm each. I am not sure what size a MS vs migraine lesions should be. But the thing is, is when I read symptoms of MS I have almost every single one. Which I now don't know if they are just happy little coincidences, or relate to each other. There were things listed for MS that I never even thought to tell a Neurologist about. And my neurological pain has recently gotten so bad that I do not know what to do.

    #2
    Hi Mark,

    Was either neurologist a specialist in MS? Do you remember how you were diagnosed originally?

    A diagnosis uses the McDonald criteria, which uses dissemination in space and time. From an MRI perspective, for space, this usually means lesions in multiple locations, such as the brain and c-spine as an example.

    For dissemination in time, if you had contrast dye in MRI, if at least one lesion is active (lights up with the dye) and you have one inactive (does not light up with dye), that could satisfy time. Alternately, if no contrast is used and you have multiple MRIs which show additional lesions from earlier, this also could satisfy time.

    I have heard of diagnosis as well without the MRI criteria met, since they know not everything shows on an MRI.

    Of course, this also assumes bloodwork done to rule out MS mimics.

    Since. You have two opinions, if there is an MS clinic or specialist near you, maybe go for a tiebreaker third opinion? Make sure to take a list of symptoms, how long/severity/any thing that aggravates it. You may want to prioritize it, but take the full list. Also any meds you take, copies of MRI and other tests. Make sure to ask "why" question on their opinion so you understand rationale behind decision. If not MS, ask the neuro where you go next to have your neurological symptoms explored as that is really the most important thing.

    So sorry you are back in limbo. I hope you get some answers and relief soon.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Hi MarkDunck,

      What was your diagnosis of MS based on and what other testing did you have done?

      Lesions may or may not be due to MS and symptoms may or may not be related to MS.

      All other possible causes for a person's symptoms must be ruled out as there is no symptom exclusive to MS. Many conditions can cause brain lesions including migraines which your Neurologist said.

      my neurological pain has recently gotten so bad that I do not know what to do.
      What have you tried for treating the pain and has anything helped?
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        The original Dr. who said I had MS based it on my appointments and said that the MRI just confirmed it. That was about a year ago. He specializes in MS but, there is a big but, he also has more than a few people on the web claiming false diagnosis. He did do the evoked potentials, blood work, and spinal tap. All came back fine and negative for anything else. Fast forward a year and now my memory is practically non existent. I fall over when I try to get dressed standing up so now I have to sit. I have a tremor in my hands and sometimes I have a jerk in my arms, legs or head. Not often but I hate it. Then my vision and hearing are getting pretty bad I chalked it up to getting older, I have to use my abdomen to squeeze to urinate, the Urologist even found that strange. I am fatigued and I hurt a lot. My neurotin does way more for me than my prescription pain killer, which is a strong one.

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          #5
          Have you had any other MRI's since the ones done a year ago? If not, ask your current Neurologist for new MRIs of brain and spine. It doesn't sound like, based on the information you provided, that the diagnostic criteria for MS has been met.
          Diagnosed 1984
          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

          Comment


            #6
            I should also say that the reason I was even seeing the first Neurologist was for back issues. All the problems I just listed are kinda new to this year.

            Comment


              #7
              Okay thank you everyone for the responses. I will ask for a new MRI. I went through my papers and found the radiologists report that I have, it says "In the appropriate clinical setting, these findings would satisfy both the dissemination in time criteria and the dissemination in space criteria for multiple sclerosis." What does time and space mean? Not sure about anything right now. Thanks for your help.

              Comment


                #8
                Originally posted by MarkDunck View Post
                Okay thank you everyone for the responses. I will ask for a new MRI. I went through my papers and found the radiologists report that I have, it says "In the appropriate clinical setting, these findings would satisfy both the dissemination in time criteria and the dissemination in space criteria for multiple sclerosis." What does time and space mean? Not sure about anything right now. Thanks for your help.
                The dissemination in time and space is what I was referring to in my prior post and part of McDonald criteria used in diagnosis.

                Space is referring to lesion location. So if lesions all in one space, then it won't satisfy the criteria. But if in more than one space in CANS (such as brain and one area of spine, most commonly, the C-spine), then it would satisfy. Based on radiologist comment, it appears you had lesions in at least areas of CANS.

                Time is referring to evidence that lesions are the result of 2 or more relapses. They can tell this either by use of contrast dye in single MRI of brain and spine, or by MRIs performed at different times. So if you only ever had the one MRI, then by the radiologist interpretation, you must have showed active inflammation for at least one lesion when the contrast dye used and one lesion that was not active (not the result of current inflammation).

                It appears that your 1st neuro agreed. But that your 2nd neuro felt that the lesions in the brain (one area or "space") were not indicative of MS and the result of migraines.

                The other aspect of the report is "appropriate clinical setting". This seems to infer that if deficits noticed on clinical exam that support MS, then lesions support it. But if not clinically supported, then could be something else.


                So if not MS, I would want to know what then is the cause of the lesions in the other "space" that was part of the MRI (cervical or c-spine, thoracic or t-spine, lumbar spine). And could this lesion(s) be responsible for your symptoms. There is more direct correlation between lesions on the spine and symptoms than brain lesions and symptoms.

                The NMSS web site has good articles on diagnostic criteria. This may help you as well.

                Hope I didnt confuse you. Lots of luck.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  The radiologist was referring to what he called foci that he saw on a previous MRI of my brain that was without contrast. Anyway because the second neurologist said migraines that is why I was asking if anyone thought that my lesions were too small or about right. I am not sure how much pain that you have with MS. That is why I kinda don't think that that might be it. I do not think with the pain I will be walking long. I really hope that your pain is no where near this bad. I am in no way trying to minimize what you must be going through. I apologize again. I will continue my search, but will leave you alone now. Thanks again, I have used up my sitting time for now.

                  Comment


                    #10
                    the reason I was even seeing the first Neurologist was for back issues
                    Did you have x-rays and/or MRIs of your back? What was found, if anything?
                    Diagnosed 1984
                    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                    Comment


                      #11
                      Okay I have a new question now. Can an attack increase your pain? The last couple of days my pain got so bad I was pretty much bed ridden. I thought I was going to end up not being able to walk any more and my migraines were back. Now all of the sudden today I am back to my "normal" amount of pain. It was so bad that I did not want to go on and I could not imagine anything worse than what I was feeling. I managed to get a hold of the first Neurologist he agreed to see me again. I will go in on the 1st of next month. He originally had wanted to start me on a high dose of interferon and I imagine nothing has changed. I am going to try the medication and see if there is a difference.

                      My back MRI's I believe did not show lesions but I believe contrast was not used.

                      Comment


                        #12
                        Oh and yes the original Neurologist had been seeing me for a while. I originally went for spine issues. He had told me that he thought that I had MS before the brain MRI showing the lesions. And his specialty was MS. But like I said more than a few people online claimed false diagnosis so I was skeptical.

                        Comment


                          #13
                          Hi MarkDunck,

                          My back MRI's I believe did not show lesions but I believe contrast was not used
                          Contrast isn't needed for lesions to be seen.

                          Did the back MRIs show bulging/herniated discs or some other back problem?

                          Where is the pain you are having?

                          He originally had wanted to start me on a high dose of interferon and I imagine nothing has changed
                          I am going to try the medication and see if there is a difference.
                          There is some sort of miscommunication between you and your Dr. or possibly a lack of understanding on your part...I don't know.

                          There are different Disease Modifying Drugs (DMDs) to try and treat MS. These medications are for long term use. These treatments are to hopefully slow progression, hopefully decrease lesion load, hopefully decrease the amount and severity of exacerbations (relapse attack, flare-up). They may or may not help with symptoms. In general, there are no guarantees.

                          There are symptom management medications to try and treat symptoms.

                          High dose steroids are used to treat exacerbations. Steroids do not change the outcome of the disease and they come with short term as well as long term side effects. The more steroids are used the less effective they become.

                          An exacerbation of Multiple Sclerosis is a worsening of old symptoms and/or new symptoms lasting longer than 24 hours and separated from the previous exacerbation by 30 days. In the case of MS, symptoms that come and go is normal and not an exacerbation.
                          Diagnosed 1984
                          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                          Comment


                            #14
                            I went back and reread this thread and your responses.

                            My neurotin does way more for me than my prescription pain killer, which is a strong one
                            Are you aware of the side effects Neurontin has and whatever other medications you are taking? A serious consideration should be given to medication as a possibility for your symptoms.

                            Side effects of Neurontin:
                            http://www.mayoclinic.org/drugs-supp...s/drg-20064011
                            If you click the link and read you will see most of the symptoms you list are side effects of Neurontin. You may want to check the side effects of any other medications you are taking.

                            But like I said more than a few people online claimed false diagnosis so I was skeptical.
                            This should be a red flag not to go back to this Neurologist. The second Neurologist you saw says you don't have MS, that your lesions are due to your migraines. Migraines as well as other things can cause brain lesions.

                            It would be in your best interest to seek a third opinion. It is best to have the correct diagnosis than being undiagnosed at some point because a Neurologist decides what you have isn't MS. This does happen.
                            Diagnosed 1984
                            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                            Comment


                              #15
                              I read the neurotin side effects and am a bit worried. But when I had stopped neurotin last my nerve pain was so bad that it was pain not just in my body but, in my brain. Not a headache, but like every single nerve in my brain was firing extreme pain all at once. There is not even room for thought when it happens because the pain consumes so much of my brain. I literally can not even think to myself at the time that this is the absolute worst pain imaginable because as I said there is no room for thought.

                              I should say that one of my sisters was also diagnosed with MS and seems to be doing okay on her injections. I don't know if hereditary things factor in or not?

                              The first Dr used to tell me from time to time that he thought I was having an attack. He even had me come back a second day in a row and examined me and said the same thing. Said something about lasting more than 24 hours but, really I only knew about my neck and back pain. There are problems there. Also some of my problems predate the neurotin. Like my shaky hands (some people think I have Parkinsons) and the twitches in my body kinda jerking movement. Also my complete inability to walk heel to toe, plus my depression, pain and urinary problems. The newer ones are the bad memory loss vision getting worse oh and I have been loosing weight. All in all I have lost about 60lbs I was worried 40lbs ago. I eat more now than beforeand now eat things like ho ho's and ice cream now but it does not matter. My sister seems to think that I have MS and that the weight loss is a wasting symptom.

                              Now from what I have been able to get off the internet migraine lesions are very small pin point kinda things, not measured in millimeters. I have two 3mm, two 5mm, and one 6mm lesion. Which really leaves me wondering. As I said he had more than a few mis-diagnosis's but, also a bunch a people that he did help. So I don't know.

                              The earliest that I can get in with a different Neurologist will be January 2018. That is how far they are booked out. In the mean time I can get back in with the first Dr on the 1st of next month. The interferon is what he told me that I needed before when he diagnosed me with MS. That is why I think it will probably be the same thing as he told me that my problem was aggressive. And with what has recently happened to me I think he might be right on my diagnosis. The sudden onset of pain that had just came a couple of days ago, was way worse than my normal pain. It even effected my brain not as bad as quitting neurotin is but pretty bad. And I really thought that I would become a cripple in my apartment. Only to be suddenly better one morning? I mean I am still in pain but it is my normal pain. Nothing as severe as what happened.

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