I am a semi-retired mother of five, and a proud grandma. I keep myself entertained and mostly out of trouble with reading, birding, photography and listening to music. I also like watching a good movie as often as I can.
I am looking forward to being a part of the MSAA Community. I joined an MS support group in my area, which meets monthly (except during the summer) so I know how affirming it can be to have someone to talk to who understands what you are going through. I thought I would try an online forum as another way to connect and share information.
In December 2010 I was diagnosed with Relapsing Remitting Multiple Sclerosis. My doctor considered me as probably having MS since at least 2005 however, because an MRI done that year for an unrelated issue, revealed lesions typical of MS. I have relatively minor mobility issues for the most part, although I use forearm crutches regularly and a wheelchair occasionally.
I am seeing progression though, so things are changing.
I do yoga, walk when I can, practice meditation and try to eat a balanced, plant based diet. Managing my day-to-day is an ongoing exercise in good self care, which I know needs to be a priority.
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LivWell
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Welcome LivWell! You’ve found a lovely place to MS about. What is the thinking behind your progression? A change in treatment or estimated time until relapses stop entirely? I’m always curious about that grey area between relapsing and secondary.
kdali I am not sure that labels are helpful with MS. In my case, in 2010 when I was finally diagnosed, ALL the tests were positive of MS (oligarchical bands in spinal fluid, multiple active lesions in the brain, inactive lesions in the brain and on the spinal cord); my vision and my gait are permanently impaired. However, my only defined, weeks long exacerbations occurred before diagnosis (1989 and 2008). Diagnosis only occurred, finally, when I self referred to a teaching hospital after I thought I had had a stroke. Though my MS has never matched the descriptions of labeled forms of the disease, it is obvious that the course is progressing, just very very slowly. I understand the limited resources available resulting in the vital need to focus on those whose lives lie before them, those struck down in their prime, those with continually damaging and limiting disease activity, but sometimes I feel that those like me who don't easily fit into a category are overlooked and sometimes dismissed.
kdali Thank you for responding. My response was mostly just grumbling and venting. From my readings and interaction with MS support associations, I know the medical community thinks there is nothing more conventional drug treatment can offer..and I know that most doctors don't have time for conversations with their patients. Fortunately, I am proactive and have a sense of self-agency, but I still cannot help wishing that the neurologists I've seen were able to take time for explanations. With only one exception, to my question, is there anything I can do to slow the progress of my MS, the neurologists I've seen have responded "there's no DMT for people in your age group" and only one has timed my walking speed, or tested my lower extremities for temperature recognition, or referred me to a neuro opthamologist to help with eye damage caused by optic neuritis. On my own, I have explored dietary recommendations, daily exercise, acupuncture, yoga, and Tai Chi; all of which are helpful. But has a neurologist ever suggested these or asked me about them? No. I guess I would like to be treated as a whole person, not merely as a disease.
LivWell Welcome to a supportive community. Like you, I was diagnosed in 2010 with RRMS though almost all my relapses happened prior to diagnosis. I have almost daily MS manifestations (numbness here, a sudden weakness there, intermittent stiffness or spasms almost anywhere) but these are termed pseudo exacerbations (a really offensive term for what impacts my life in very real ways). My odometer will roll over 78 years this month, but despite a long delay in diagnosis, I've had many of these symptoms since my 20s.
With rare exceptions, I am apparently of little interest to doctors whose attitude seems to be, well, what did you expect??? You are an old woman. I was never put on DMTs, but I do notice a decline (a long, slow slide) in all my abilities, limiting me in ways that affect the quality of my life. I try to accept with equanimity what I have been given, grateful that I am still able to walk without assistance though my hiking days are over.
I can relate to the "...well, what did you expect???" sentiment from the medical community. A recent comment from an occupational therapist was, "Do you understand how MS affects the body?" Um..... yeah, I do. Anyway, I am with you on accepting how MS decides to show up and not adding onto my physical suffering with mental gyrations that only make me miserable. I too am grateful for the mobility I have, and the fact that I can do a lot of birding from my back deck.
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