Although, due to having SPMS without relapses there is no medication for me at this time.
SPMS= Secondary Progressive Multiple Sclerosis
With relapses there is medication.
Mine just goes steadily downhill with disabilities, but with relapsing for those people with SPMS they still have periods of being better.
So for those people medication happily works, and damn if I am not slightly jealous!
Of course there are also numerous medications RRMS= Relapsing Remitting that most of us are initially diagnosed with, and its course is basically easy to understand by its name. And I was on Copaxone for nearly a decade with RRMS and even in the beginning when first diagnosed with SPMS, since I too was showing slight improvement.
Within a decade more or less many 60% get diagnosed with SPMS, damn again!
Some can have RRMS for their entire lifetime!
And then there is the last and most insidious PPMS= Primary Progressive Multiple Sclerosis, usually men and seniors are diagnosed with this form.
And this one does have medication available in spite of the name of progressing, but oddly enough it does remit slightly, so not all downhill from the onset.
Mine has not shown any improvement or "remits", just the downward turn.
Is you head spinning backwards yet?
Or are extremely bored?
Or are you just saying, "Geez I didn't ask!" Who cares really.
And yes Multiple Sclerosis is still considered an orphan disease with millions worldwide having it, although the exact numbers fluctuate when trying to get stats. Even organization do not have the exact number:http://multiple-sclerosis.emedtv.com/multiple-sclerosis/multiple-sclerosis-statistics.html "
Thanks to:https://www.nationalmssociety.org/What-is-MS/MS-FAQ-s#question-How-many-people-have-MS
NORD, not the Santa one this acronym stands for National Organization for Rare Diseases paid for my Copaxone that is an injectable and costs nearly six thousand dollars a month, not a year A MONTH! Even the co-pay was $450 a month, but different non-profits took care of that! Fortunately, I never had to pay a penny.
After a couple of years, another my paid for insurance covered it, and still the non-profits covered the co-pay.
I went off as per doctor last April, since I was getting worse even with it... fast forward to this fall, and hope since it appeared the I had a relapsed more so with the newest symptoms of an essential tremor and Nystagmus, jumpy eyes, quite significant.
The tremor so much so the MRI brain tech guy thought I could control it and asked me to stop?
We waited, when he realized it was beyond my control.
Scary!
Dancing eyes are one thing.
After seeing my doctor after being put on half dosage of IV Solumedrol for three days and found that did not help.
I was pronounced in SPMS without remitting or improvement.
I was told my lesions that are causing the tremors and Nystagmus are in my cerebellum.
That last IV steroids sent me to the hospital for the IV for my pseudo diabetic reaction going too high as well as my CKD going down too low to 32. Now glucose 82, and CKD gone with my number now being 70 for the eGFR!
So not even IV Solumedrol for ever again!
Even though the neuro did see more graying in my eyes.
Nystagmus prisms glasses, and deep brain stimulation for tremors.
Who knows....
Happy good night all!
Count your blessings and we will too!
And next time please be here or be square, ya hear!
*A couple of nights ago I miswrote, " And next time please be there or be square, ya hear!"
I left it when I went back to reedit after published. It actually makes more sense somehow, for you are there not here, true?
But reading this you would have to be here to do that!
Huh? LOL!
SPMS= Secondary Progressive Multiple Sclerosis
With relapses there is medication.
Mine just goes steadily downhill with disabilities, but with relapsing for those people with SPMS they still have periods of being better.
So for those people medication happily works, and damn if I am not slightly jealous!
Of course there are also numerous medications RRMS= Relapsing Remitting that most of us are initially diagnosed with, and its course is basically easy to understand by its name. And I was on Copaxone for nearly a decade with RRMS and even in the beginning when first diagnosed with SPMS, since I too was showing slight improvement.
Within a decade more or less many 60% get diagnosed with SPMS, damn again!
Some can have RRMS for their entire lifetime!
And then there is the last and most insidious PPMS= Primary Progressive Multiple Sclerosis, usually men and seniors are diagnosed with this form.
And this one does have medication available in spite of the name of progressing, but oddly enough it does remit slightly, so not all downhill from the onset.
Mine has not shown any improvement or "remits", just the downward turn.
Is you head spinning backwards yet?
Or are extremely bored?
Or are you just saying, "Geez I didn't ask!" Who cares really.
And yes Multiple Sclerosis is still considered an orphan disease with millions worldwide having it, although the exact numbers fluctuate when trying to get stats. Even organization do not have the exact number:http://multiple-sclerosis.emedtv.com/multiple-sclerosis/multiple-sclerosis-statistics.html "
Thanks to:https://www.nationalmssociety.org/What-is-MS/MS-FAQ-s#question-How-many-people-have-MS
- Smaller Text
- Larger Tex
- Prin
"How many people have MS?
More than 2.3 million people are affected by MS worldwide. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the prevalence of MS in the U.S. can only be estimated. The Society continues to advocate for the establishment of a national registry that will track the number of people living with MS and has made a commitment to re-evaluate the current prevalence estimate and investigate the process by which an updated estimate can be identified."
After a couple of years, another my paid for insurance covered it, and still the non-profits covered the co-pay.
I went off as per doctor last April, since I was getting worse even with it... fast forward to this fall, and hope since it appeared the I had a relapsed more so with the newest symptoms of an essential tremor and Nystagmus, jumpy eyes, quite significant.
The tremor so much so the MRI brain tech guy thought I could control it and asked me to stop?
We waited, when he realized it was beyond my control.
Scary!
Dancing eyes are one thing.
After seeing my doctor after being put on half dosage of IV Solumedrol for three days and found that did not help.
I was pronounced in SPMS without remitting or improvement.
I was told my lesions that are causing the tremors and Nystagmus are in my cerebellum.
That last IV steroids sent me to the hospital for the IV for my pseudo diabetic reaction going too high as well as my CKD going down too low to 32. Now glucose 82, and CKD gone with my number now being 70 for the eGFR!
So not even IV Solumedrol for ever again!
Even though the neuro did see more graying in my eyes.
Nystagmus prisms glasses, and deep brain stimulation for tremors.
Who knows....
Happy good night all!
Count your blessings and we will too!
And next time please be here or be square, ya hear!
*A couple of nights ago I miswrote, " And next time please be there or be square, ya hear!"
I left it when I went back to reedit after published. It actually makes more sense somehow, for you are there not here, true?
But reading this you would have to be here to do that!
Huh? LOL!
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