Long term MS, less than a year with Official Dx
Posted: Tue Jan 02, 2018 5:36 pm
Hello all,
Forums have been a valuable resource, providing loads of information, but have not entirely helped with my conflicted feelings and ambivalence towards having MS.
I was Officially Diagnosed about eight months ago, ultimately by two unaffiliated neurologists. I have "a great many lesions," but have had a (mostly) benign history of symptoms, and have exhibited few signs during neurological exams. This is changing now as I reach my early 60's. I believe I had symptoms of MS as early as a girl of four years - some symptoms have bothered me, coming and going, for as long as I can remember.
Over the years I have presented myself in doctor's offices and have had my concerns brushed away. Usually I'd experience a symptom/s like: numbness, weakness, a paresthesia, a foot drop, bladder issues, nerve pain, double vision, crushing fatigue; and make an appointment. By the time of the appointment, the symptom would vanish, or simply remain invisible.
I have been told a few times that I was having "atypical migraines." Doctors would shrug. Family, as well as doctors, have made little of, or mocked, my description of what I was experiencing. I heard many times that it is all in my head - (it is) - and have been accused of malingering or seeking attention.
I have grown sensitive to these accusations - and had, myself, become skeptical of my own suspicions regarding my physical and cognitive experience of MS. Reading forums, I realized there are a great many people who believe they have MS but have not been diagnosed.
In the early 2000's, I was going through a very stressful time and symptoms became less curious and more troubling. Fairly sure I had MS, I convinced my doubting primary care doctor to give me a reference to see a neurologist. I chose an MS specialist and had a positive MRI. I was told I probably had MS. He then did a lumbar puncture and evoked potential testing, none of which were positive for MS. A subsequent MRI did not show any new disease activity. The neurologist seemed less sure I had MS, or at least that was the way I interpreted the situation. My family and primary doctor still insisted that I could not have MS.
So I stopped thinking about this. I moved and did not discuss MS with new doctors. I mentioned leg weakness several times and was told to exercise. My symptoms continued to come and go, but as I have grown older, some symptoms have grown more intense and troubling. I went to a urologist for help with bladder dysfunction and she asked if I had MS, saying my symptoms sound like MS.
So I went to see another neurologist - again, with a referral from another doubting PCP. The neurologist scoffed at my belief that I have MS, but then my MRI came back covered in lesions typical of MS. He didn't believe treatment was warranted - due to my "advanced age" - saying that the immune system slows down with age and my disease would just go away by itself.
As my symptoms are worse and becoming more limiting, I went to another neurologist (MS specialist) with MRI in hand. After a ton of blood tests, an MRI of my spine, and thorough exams, i am on daily injections of Glatimer acetate. I am coming to terms and banishing my own self-doubts -
- but now have to find a new neurologist as my treating doctor has left her practice. (So frustrating!)
Sorry - too long - but I must thank you all for sharing your experiences, so many of which have been so helpful to me in this journey.
Forums have been a valuable resource, providing loads of information, but have not entirely helped with my conflicted feelings and ambivalence towards having MS.
I was Officially Diagnosed about eight months ago, ultimately by two unaffiliated neurologists. I have "a great many lesions," but have had a (mostly) benign history of symptoms, and have exhibited few signs during neurological exams. This is changing now as I reach my early 60's. I believe I had symptoms of MS as early as a girl of four years - some symptoms have bothered me, coming and going, for as long as I can remember.
Over the years I have presented myself in doctor's offices and have had my concerns brushed away. Usually I'd experience a symptom/s like: numbness, weakness, a paresthesia, a foot drop, bladder issues, nerve pain, double vision, crushing fatigue; and make an appointment. By the time of the appointment, the symptom would vanish, or simply remain invisible.
I have been told a few times that I was having "atypical migraines." Doctors would shrug. Family, as well as doctors, have made little of, or mocked, my description of what I was experiencing. I heard many times that it is all in my head - (it is) - and have been accused of malingering or seeking attention.
I have grown sensitive to these accusations - and had, myself, become skeptical of my own suspicions regarding my physical and cognitive experience of MS. Reading forums, I realized there are a great many people who believe they have MS but have not been diagnosed.
In the early 2000's, I was going through a very stressful time and symptoms became less curious and more troubling. Fairly sure I had MS, I convinced my doubting primary care doctor to give me a reference to see a neurologist. I chose an MS specialist and had a positive MRI. I was told I probably had MS. He then did a lumbar puncture and evoked potential testing, none of which were positive for MS. A subsequent MRI did not show any new disease activity. The neurologist seemed less sure I had MS, or at least that was the way I interpreted the situation. My family and primary doctor still insisted that I could not have MS.
So I stopped thinking about this. I moved and did not discuss MS with new doctors. I mentioned leg weakness several times and was told to exercise. My symptoms continued to come and go, but as I have grown older, some symptoms have grown more intense and troubling. I went to a urologist for help with bladder dysfunction and she asked if I had MS, saying my symptoms sound like MS.
So I went to see another neurologist - again, with a referral from another doubting PCP. The neurologist scoffed at my belief that I have MS, but then my MRI came back covered in lesions typical of MS. He didn't believe treatment was warranted - due to my "advanced age" - saying that the immune system slows down with age and my disease would just go away by itself.
As my symptoms are worse and becoming more limiting, I went to another neurologist (MS specialist) with MRI in hand. After a ton of blood tests, an MRI of my spine, and thorough exams, i am on daily injections of Glatimer acetate. I am coming to terms and banishing my own self-doubts -
- but now have to find a new neurologist as my treating doctor has left her practice. (So frustrating!)
Sorry - too long - but I must thank you all for sharing your experiences, so many of which have been so helpful to me in this journey.