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Originally Posted by Kat 60
Diagnosed in 2007, have had what seems to be exacerbation's: (starts with numb and tingling in leg then hands and strange headaches and confusion, feeling awful)each late spring since. I had an infusion the first year and this time I took the pills, I caught this one early because I had been there last year. Is this what to expect even while on the disease modifying medications once a week? I had read that some people on the meds do not have relapses for years.Should I talk to my Dr. about changing medications? This HOT summer is doing me in. I'm stuck inside with the 101+ temps outside, I had been person who loved the outdoors, now it brings on the above.
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Are you taking Avonex? That's the only 1Xweekly DMD I know of. Everyone with MS is different and experiences their own unique course of the disease. Some folks have flares sporadically....several times a year. Some have them at the same time each year (for me it seemed like October was the "month" for a while). Some have one and then it's years before they have another one or even any sort of symptom.
Your Neuro should be able to look at your medical records and see how often you seem to be having an exacerbation. I doubt he will advise stopping or even changing your DMD if you're having periods of remission.
Some folks respond very well to the DMD's and some don't. It all depends (I believe) on your own body's chemical makeup as to how the DMD's work for you. I tried but could not tolerate any of the conventional DMD's. I take LDN now and it's been a Godsend for me. My body's chemical makeup responds very well to it. It's just a crap shoot.....but once you find what works for you individually I'd stay with it.
P.S. You're definitely not alone with being stuck inside during this heat wave. It's ridiculously hot here and I've been indoors now going on five days! I feel like a hermit! Heat just makes everything worse for me with my MS.