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    How soon is too soon to push for new MRI's?

    First, thank you kindly for any response - I'm a little scared and unsure how to proceed.

    Two years ago I started experiencing bladder issues (frequency, urgency) which the doctor thought was kidney stones. After a CT scan they ruled this out and I've been seeing urologists ever since. They have no idea what is going on. 6months later I experienced tingling (pins and needles) in one foot that suddenly spread to all four limbs. I also experienced leg weakness (jelly legs) and all kinds of strange paresthesia (burning skin, tingling, on random parts of my body--back, abdomen, face, shoulders). I suspected MS and pushed docs for testing. A year went on as the neuros/ primary docs investigated - did 3 EMG, blood panels, MRI of Head, Neck, lower lumbar (*no spinal tap, no cspine) and all tests came back negative (no lesions found).

    Two neurologists told me I did not have MS "at this time" based on the MRIs. One said my sx did not present in typical MS pattern (something about it being on both sides as opposed to one--you would see lesions needing to impact both sides, and intensity of sx waxing and waning not being typical - though I understand that atypical does not mean impossible). One basically told me that MS was "highly unlikely, but I can't promise you won't get it in the future, or that you won't get hit by a buss"--then chalked it up to anxiety (which I don't think it is because I wasn't anxious until all this started happening).

    Fast forward to today--Along with the old issues --I now am experiencing an increase in tingling sensation up my left leg all the way to the thigh. While the sensations come and go (i.e. they can vary in intensity) - they are always there (i.e. none have disappeared and I experience them daily). Slight pain in eyes (scheduled to see an ophthalmologist about this sx), and increased fatigue.

    I asked about further MRI's to my PCP - but he seemed dismissive and said something about how I might not want to under go that much radiation so closely (1.5 year after 1st series of MRIs). I asked about a lumbar puncture to my neuro and he told me "even if it did show some antibodies it wouldn't give you a clear diagnosis or course of treatment" - which is basically to wait around for more SX.

    I've tried to get in to see an MS specialist for further help, but the one I contacted will not see me until I've been given a diagnosis.

    My Qs: (1) Should I push for more MRI's? I don't think they saw my entire back. Can lesions form suddenly in a year? (2) Why would a neuro say MS is unlikely just based off of sx presentation? He seems very dismissive/ almost disinterested. Am I missing something? While I realize MS typically presents on one side, I've also read there are some cases of RRMS patients with similar presentation. (3) What should I do at this point? Wait for more SX?

    Forgive me for so many q's. I just have no idea what is going on with me, my doctors seem dismissive but cannot tell me what is going on, and I myself am highly suspicious its MS.

    Thank you for using your journey and compassion to address my situation. Any input would be greatly appreciated.

    #2
    My Qs: (1) Should I push for more MRI's? I don't think they saw my entire back. Can lesions form suddenly in a year?

    Lesions can form anytime and can even disappear. I would drop the discussion of MS, but push for testing, whether MRI or other to look at cause.

    (2) Why would a neuro say MS is unlikely just based off of sx presentation? He seems very dismissive/ almost disinterested. Am I missing something? While I realize MS typically presents on one side, I've also read there are some cases of RRMS patients with similar presentation.

    If your neuro exam was normal, coupled with a normal MRI, and add in a very unusual presentation for MS, it would explain his decision. May not excuse his disinterest in helping find acause, but if MS specialist, could be why.

    (3) What should I do at this point? Wait for more SX?

    I would push your PCP for more testing or go to general neuro. I would not bring up MS, as often, if doc feels self diagnosing, they start to shut a patient out or just chalk it up to anxiety. Present your symptoms, with time line and intensity, but not a diagnosis.

    Good luck.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Hi Joe23,

      When being followed by a Neurologist for suspected MS MRIs are done every 6 months to a year. This is to look for any changes that might indicate MS. At this point you are not suspected of having MS.

      Two neurologists told me I did not have MS "at this time" based on the MRIs.
      The diagnostic criteria for Multiple Sclerosis relies heavily on MRI evidence.

      One said my sx did not present in typical MS pattern (something about it being on both sides as opposed to one
      Your symptoms are all over which isn't indicative of MS. Looking at conditions that cause all over symptoms would be more beneficial for you. Your Primary Care Physician could help in this area.

      One basically told me that MS was "highly unlikely, but I can't promise you won't get it in the future, or that you won't get hit by a buss
      There is no definitive test for Multiple Sclerosis so MS cannot be completely ruled out. For this reason your Dr., as well as my self, made the comment "at this point/at this time." However, the diagnostic criteria has strict guidelines. There isn't any test, by it's self, that can give a diagnosis of MS.

      Many other conditions cause similar symptoms as those seen in MS. This would include, but not limited to, vitamin/mineral deficiencies, some medications, and mental health problems. There is no symptom that is exclusive to Multiple Sclerosis.
      http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

      How was your Neurological exam/evaluation? Normal? Abnormal? If your evaluation/exam was normal and your MRIs are normal MS becomes unlikely.
      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
        Thanks

        Thanks for the replies Snoopy and penn. to answer your q's1) had two emgs--both were normal- but both were done prior to the new sx. I am scheduled for another Next month.(2) they've tested for diabetes, lupus, vitamin def, thyroid, Lyme, etc.. all negative. I think they've excluded everything except ms. According to my last appt when I pressed the neurologist he basically said that my sx are most in line with "stroke or me" then proceeded to say both were unlikely based off of tests.. so I was confused.

        Penn--I didn't know me patients take mris that frequently. I will take your suggestions and press for more mris- should I press for more of both head and spine or would head suffice? Also do you know of any studies/ threads I can read on the frequency/ dangers of mri?Snoopy--thank you for your input. I realize that bilateral presentation of sx are not "typical" of ms - but correct me if I'm wrong--there are patients who do present bilaterally initially and then go on to develop further sx on one side.

        Sorry if i am long winded. Been at this for almost 2 years
        with no answers. I know already from the threads I've read on this forum that sometimes a diagnosis can take years. Thank you for your time and generosity--seriously thank u.

        Comment


          #5
          Hi Joe,

          I realize that bilateral presentation of sx are not "typical" of ms - but correct me if I'm wrong--there are patients who do present bilaterally initially and then go on to develop further sx on one side.
          Your Neurologist gave an explanation for this:
          One said my sx did not present in typical MS pattern (something about it being on both sides as opposed to one--you would see lesions needing to impact both sides
          My symptoms present bilaterally, from the waist down. This is due to spinal cord involvement. Your symptoms are random from face to feet, this is not typical of MS. As your Neurologist stated, you would need lesions impacting both sides.
          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
            Also do you know of any studies/ threads I can read on the frequency/ dangers of mri?
            Magnetic Resonance Imaging (MRI) uses magnetic fields, radio waves, and field gradients to generate pictures. MRIs are not dangerous and radiation is not used.

            MRI of Head, Neck, lower lumbar (*no spinal tap, no cspine)
            The c-spine is the neck so you have had a MRI of that area.
            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


              #7
              Your post is not abnormal from a person that has strange symptoms and no diagnosis. I understand that you are questioning your PCP. Has your PCP ordered CBC and what is your vitamin D level? Ask your PCP about the vit. D level!
              Most PCPs think that 25-30 ng/ml is acceptable. But every neurologist that I have questioned has told me that a level of 40 to 70 ng/ml is advisable for people with neurologic problems.
              I hope that you discover the cause of your symtoms! Good luck

              Comment


                #8
                Hi Joe23 as others her have said MS is so dam hard to DX, we all have very different and the same symptoms, in the past I have symptoms on both side of my body at the same time, my bottom 2 fingers on both hands started to go numb and tingling running parallel along my hands, this continued over a period of time along the bottom of both hands up the bottom of both arms "running parallel with my arms" then both feet soles and onto both sides of my stomach all at the same time I thought I had poisoned myself spraying for bugs on fruit trees.

                When I was first DX the neurologist wasn't looking at MS he was trying to rule out (mad cow disease) "I was not told this at the time" that it takes more then 1 episode of symptoms before it can be DX as MS, I refused to have a spinal tap as when I was younger I had a brain tumour and with complications I had to have a spinal tap every day for 40 days so I said I would never have another.

                It took a long time before I was DX with MS but I was lucky my symptoms had settled down so I wasn't looking for a DX, after my first episode my doctor told me I had lesions along my spine and brain, everyone with MS has these but some get these and don't have ms (this was 20 something years ago) his response stayed in the back of my mind but no symptoms no need to worry, I had a lot of fatigue and other symptoms over the years but I never associated these with MS.

                Years after I was first DX my right side started the same as the first time my bottom fingers started to go numb this continued up my arm until eventually my entire right side of my body was numb, half my lips half my nose right down the middle I remember the Neurologist jabbing a pin all over my right side they thought it was a stroke until the penny dropped I had MS.I guess with this long winded post I'm trying to say MS symptoms can happen anywhere but normally not on both sides at once, it is hard not to self DX when DR google is so close, sometimes we feel like we have to lead the doctors I know I do, as for MRI's when we have been trying to track down a problem my neurologist has ordered 4 or more in a year.

                I hope you get the answers you need as finding out what the problem is can be half the battle then you can start treatment, keep searching for answers, when I had my brain tumour for about 5 years I had shocking migraines from 10yo the local quacks couldn't find an answer so they said I was seeking attention and there was nothing wrong with me ,I was 15 when I had a cat scan a week later I had my pituitary gland and tumour removed

                good luck Craig

                Comment


                  #9
                  Thank you again for the responses. SNOOP-yes you are right - I did have an MRI a year ago on C-spine/ Brain/ Lower Lumbar. I meant to say thoracic region--I think that's the one area the did not check. After the Brain/Cspine/Lumber - they dismissed my MS concerns and stopped looking- one of the reasons being the strange bilateral presentation. My concern is that I'm in a situation like Dastardly where it does in fact present bilaterally initially and then one side later on. Currently my left side is definitely experiencing what appears in my mind as a "flare" in sx - increase tingling on left hand/ foot. And there was a time when I woke up and my left arm felt extremely weak and dead/ almost as if it had completely fallen asleep.

                  Jerry D- I went back into my records and did not see a VIT D test. They did do Vitamin B and it was normal. But I'll go back and ask for Vit D.

                  Dastardly--So the first time you experienced numbness/ tingling they did find lesions- but never suggested MS? During those early years did the tingling sx completely disappear before reappearing 10yrs later or where they always there?

                  I know MS is a DX of exclusion. I've been at this for almost two years and I feel they've excluded everything on my list of possibilities so I'm completely afraid and frustrated. Thank you again for the suggestions. At this point I will push for more MRI's- (Brain/ thoracic as a priority) spinal tap and go from there. Thanks again. I'll keep you all posted if anything develops.

                  Comment


                    #10
                    Hi Joe23,

                    In MS; Lesions on the Thoracic spinal cord would only cause symptoms from that point down. Any symptom above the Thoracic level would not be caused by damage in that area.

                    Yes, MS is a diagnosis of exclusion but there also needs to be testing that indicates MS as the most likely cause for a person's symptoms. Without clinical evidence of MS a diagnosis of the disease cannot and will not be made, even if another cause isn't known.

                    Best wishes...
                    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
                      Thanks for the response Snoopy- I went ahead and looked up thoracic region of MRI - and it seems that would cover the arms and below- which seems to be where my sx are. I'm not sure why they never bothered to check the thoracic region (maybe insurance reasons?) but it seems like my sx profile could still be in that region (my arms downward). I'll keep u posted. I appreciate your responses- they are informative and thorough.

                      Comment


                        #12
                        My understanding is that lesions in the thoracic spine are not as common as brain/cervical. I had MS diagnosis 8 years before they even checked there due to new symptoms. But thoracic still clear for me.

                        In order to diagnose, they need dissemination in space and time. So lesions need to be in more than one place and evidence of more than one relapse. My diagnosis was based on lesions in brain and cervical spine (so dissemination in space), with one lesion lighting up on MRI, and all other lesions inactive (dissemination in time). Also had abnormal neuro exam.

                        Again, my advice is to push your doctor for tests, but not specific to MS. I know all three of the neuros I saw have said they are always annoyed when a patient self diagnoses in the absence of clinical evidence. They want symptoms only. They don't mind patients educating themself to ask questions. But not for diagnostic reasons.

                        I have heard other stories where docs are more likely to chalk symptoms up to anxiety when self diagnosing. They are not fans of "Dr. Google". So if you keep getting it's anxiety, you may want to back off MS, focus on symptoms, and ask questions that can help drive testing to be done. As an example, ask what was the MRI machine, T1.5 or T3.0. If 1.5, you could ask if getting views on 3.0 might show things that T1.5 wouldn't in the absence of any diagnosis to explain symptoms.

                        Good luck.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Hi Joe when my tingling started I never went to see a doctor it was annoying but not painful and I was newly married with a young family so I put it on the back burner it did eventually go away but I can't remember how long it lasted for but it went away, it wasn't until I had "L'Hermmitte's" sign I didn't know what the problem was at the time, I thought I had hurt my neck from working in underground mines constantly hitting my head on the roof, the neurologist was concerned it might be "Creutzfeldt-Jakob disease" mad cow disease, because I was on a lot of human derived hormones from having my pituitary gland removed and a lot of hormone replacement, talk about witch doctors one of the hormones was freeze dried pituitary glands from the dead and mixed with urine from menopausal nuns then injected into you, anyway that was when he sort of said what he said about lesions in MS and some get them and don't have MS Craig

                          Comment


                            #14
                            Originally posted by Joe23 View Post
                            Thanks for the response Snoopy- I went ahead and looked up thoracic region of MRI - and it seems that would cover the arms and below- which seems to be where my sx are. I'm not sure why they never bothered to check the thoracic region (maybe insurance reasons?) but it seems like my sx profile could still be in that region (my arms downward). I'll keep u posted. I appreciate your responses- they are informative and thorough.
                            I have nerve issues with the lower 2 fingers in my left hand, that correlate with a lesion I have around C5-C6 area.

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