I'm sure this is the same old story. Something not right. Doctor blowing you off and acting like it's age, lifestyle, or in your head. In retrospect, I believe I've been suffering from PPMS going back 10+ years, but wasn't diagnosed until December. I'm 50 now. This was only after I insisted on being seen by a neurologist. At that point my former doctor pulled out the reflex hammer and had me walk a short bit and concluded there was something neurological going on.
My sister was diagnosed with RRMS the previous year. This was also passed on to my doctor who dismissed my symptoms as non-MS and stated that it's mainly a female disease. He did the same when I explained i had symptoms similar to my mother's fibro-M. I was tested for RA, Lyme, and spent a summer going through every test. I was sent for carpal tunnel release surgery because that was what it was, and not MS. You can imagine the results. No change.
Being diagnosed with PPMS has been an interesting experience. I wasn't prepared for how it would dump my belief system on its head. The realignment of priorities and values, etc. To be honest, that portion has been very cool and not something everyone gets to experience. Making you stand naked and see who you really are.
I'm sure my frustrations are shared by many. Not knowing what will work from one minute to the next. Episodes that are severe, and offer a glimpse of what's to come. Not knowing what your progression pattern means in terms of longevity and quality of life.
I played soccer for almost 30 years. I love riding horses and playing cowboy. I would hike long distances over tough terrain. I went from riding horses in October to having a cane and walker around, not knowing which I'll need. Periods of not needing either for short trips. Taking the cane "just in case", not knowing if I can make it 100yds without it. The stability of the walker and it providing a sense of "normalicy". Finding that if I have so much as a cold, a hot shower will drop me to my knees.
So little information available to gauge your progression. No clue if you have a year or 20. Prior to any mention of MS, having an internal feeling that you have about 18 months to live with no clue where it's coming from. Not the usual depression and thoughts of a foreshortened life. Repeatedly reading that they will watch you for years before rendering any sort of decision regarding prognosis, yet not knowing if you'll be around that long. The intensity of symptoms constantly increasing. Moments where it takes 4 hours to remove your shirt. Friends asking if they should call 911 because you became unresponsive and your pulse drops to 30 and weak. Knowing you need a nap, but knowing that afterwards it will take an hour for your body to become functional.
Lesions on the brain (24), t-spine (6), brain stem, polycythemia vera, and partial collapses in the lungs. Throw in normal wear and tear and it becomes a mess to sort out and determine what is MS and what is unrelated. Questions about whether to be treated for one thing knowing it will prolong life so you can lie in filth and drool unable to move.
Throw in sorting out whether the condition(s) drive thoughts and feelings. Victims of abuse often have feelings that generate their memories. "I feel this way so this is what must have happened." Are the symptoms driving the same type of thought process? The MS Hug and such mimicking anxiety so your brain and body respond as if it's an anxious moment?
Ya, it's an ugly situation to be in. It's not without positive aspects. I hope I hit a plateau at some point where I can breath without a curve being thrown to take my mind back to what I'm dealing with. Almost six months of rapid deterioration and it gets old. Between managing life and making sure you don't develop somatic based symptoms, and each day can be tricky.
My sister was diagnosed with RRMS the previous year. This was also passed on to my doctor who dismissed my symptoms as non-MS and stated that it's mainly a female disease. He did the same when I explained i had symptoms similar to my mother's fibro-M. I was tested for RA, Lyme, and spent a summer going through every test. I was sent for carpal tunnel release surgery because that was what it was, and not MS. You can imagine the results. No change.
Being diagnosed with PPMS has been an interesting experience. I wasn't prepared for how it would dump my belief system on its head. The realignment of priorities and values, etc. To be honest, that portion has been very cool and not something everyone gets to experience. Making you stand naked and see who you really are.
I'm sure my frustrations are shared by many. Not knowing what will work from one minute to the next. Episodes that are severe, and offer a glimpse of what's to come. Not knowing what your progression pattern means in terms of longevity and quality of life.
I played soccer for almost 30 years. I love riding horses and playing cowboy. I would hike long distances over tough terrain. I went from riding horses in October to having a cane and walker around, not knowing which I'll need. Periods of not needing either for short trips. Taking the cane "just in case", not knowing if I can make it 100yds without it. The stability of the walker and it providing a sense of "normalicy". Finding that if I have so much as a cold, a hot shower will drop me to my knees.
So little information available to gauge your progression. No clue if you have a year or 20. Prior to any mention of MS, having an internal feeling that you have about 18 months to live with no clue where it's coming from. Not the usual depression and thoughts of a foreshortened life. Repeatedly reading that they will watch you for years before rendering any sort of decision regarding prognosis, yet not knowing if you'll be around that long. The intensity of symptoms constantly increasing. Moments where it takes 4 hours to remove your shirt. Friends asking if they should call 911 because you became unresponsive and your pulse drops to 30 and weak. Knowing you need a nap, but knowing that afterwards it will take an hour for your body to become functional.
Lesions on the brain (24), t-spine (6), brain stem, polycythemia vera, and partial collapses in the lungs. Throw in normal wear and tear and it becomes a mess to sort out and determine what is MS and what is unrelated. Questions about whether to be treated for one thing knowing it will prolong life so you can lie in filth and drool unable to move.
Throw in sorting out whether the condition(s) drive thoughts and feelings. Victims of abuse often have feelings that generate their memories. "I feel this way so this is what must have happened." Are the symptoms driving the same type of thought process? The MS Hug and such mimicking anxiety so your brain and body respond as if it's an anxious moment?
Ya, it's an ugly situation to be in. It's not without positive aspects. I hope I hit a plateau at some point where I can breath without a curve being thrown to take my mind back to what I'm dealing with. Almost six months of rapid deterioration and it gets old. Between managing life and making sure you don't develop somatic based symptoms, and each day can be tricky.
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