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.
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.
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