Aa
Alternative treatments
I heard aromatherapy, accupuncture, massage therapy and marijuana are alternative treatments. Anyone out there tried these? I'm going to my neuro Tuesday for my LP results. I think I'm gonna mention these. I am not big about sticking all the "typical" drugs for MS in my system. No, I'm not a naturalist, i smoke (cigarettes) and drink and eat crap not healthy for me. But, if I'm gonna have this messed up disease the rest of my life......can't I have SOME enjoyment in trying to treat it??? I want a neuro doctor with MS to treat me., So, when i say "i feel like ***!!!", he knows exactly what i mean. I feel bad enough, i do not need nor want side effects from Rebif, or betaseron or Solu-Medrol, or any of the other drugs out there, making me feel bad. I am doing that all by myself!!!! So, if a little massage or pot helps........WHY NOT???? Just asking?
Tiffany,
I can't comment about the alternative therapies. Right now I'm just fighting to get regular MS medicines.
I do want to say that I completely understand about the steroids making you cranky. It is tough and I felt like such a beast when I was on them. I kept apologizing to my husband for my behavior and he kept assuring me I was acting just fine. Which I would have believed him, except my 3-year-old told his sister "Get out of my face!" and I realized he had picked that up from hearing me. Not my proudest parenting moment. I just tried to get through it the best I could, and eventually everything was normal again. When I started on my second round of steroids (pretty much less than 2 weeks after the first round ended!) I stopped at the store and bought a cake and had them write "I apologize in advance!". I knew it was going to be tough to go through that all again so soon.
I also wanted to say, that the MS of 20 years ago is not the MS of today.
~Jess
I can't comment about the alternative therapies. Right now I'm just fighting to get regular MS medicines.
I do want to say that I completely understand about the steroids making you cranky. It is tough and I felt like such a beast when I was on them. I kept apologizing to my husband for my behavior and he kept assuring me I was acting just fine. Which I would have believed him, except my 3-year-old told his sister "Get out of my face!" and I realized he had picked that up from hearing me. Not my proudest parenting moment. I just tried to get through it the best I could, and eventually everything was normal again. When I started on my second round of steroids (pretty much less than 2 weeks after the first round ended!) I stopped at the store and bought a cake and had them write "I apologize in advance!". I knew it was going to be tough to go through that all again so soon.
I also wanted to say, that the MS of 20 years ago is not the MS of today.
~Jess
Hi again, Tiffany. I do understand that you lead a normal life, with a few vices. Me too. Neither of us is way out there on some crusade for the natural. I'm sorry I sounded sort of crabby, which upon re-reading, I did.
It's unlikely you can get any enjoyment out of treating MS, though you certainly can enjoy life otherwise.
Mary makes some very valid and helpful points. I won't restate them, so please take another look. Complementary therapies, not alternatives, do have their place.
One thing I missed in your posts first go-round is the part about the steroids. Some people do get very agitated and irritable from them, but it doesn't last forever. Be good to yourself. This phase will pass, and you'll come to a point of coping with your MS and living your life too. Compromises here and there, but that's life anyway.
ess
It's unlikely you can get any enjoyment out of treating MS, though you certainly can enjoy life otherwise.
Mary makes some very valid and helpful points. I won't restate them, so please take another look. Complementary therapies, not alternatives, do have their place.
One thing I missed in your posts first go-round is the part about the steroids. Some people do get very agitated and irritable from them, but it doesn't last forever. Be good to yourself. This phase will pass, and you'll come to a point of coping with your MS and living your life too. Compromises here and there, but that's life anyway.
ess
Tiffany, maybe it would help if you think of these things as complimentary therapies rather than alternative treatments. They are usually used in addition to drugs rather than instead of them. Many of us here use one or more of these therapies to ease specific symptoms while also using a DMD to try and limit MS relapses.
It kind of sounds like you are still in panic mode about your diagnosis. It's often extra hard to come to terms with a diagnosis when a person has experience within the health care field. Once your roid rage is chilled take a little while to adjust and educate yourself as a patient instead of a care-giver.
I understand the desire to limit drugs. They are all chemicals or toxins that have undesired effects to go along with their benefits. Still, I'm glad to not have to suck on a tree to get my pain relief chemical.
Unfortunately, a bad relapse or an agressive MS disease process can land people in a nursing home, especially if they have no one to help care for them at home. I'm sure your patients would have done anything possible to limit their level of disability and continue to care for themselves (or wish they had). Thank you for helping them when they needed it.
There are many of us here on the forum beyond the ancient age of 50. Quite a few have had MS for many years. Several continue to work. Almost all of us can still wipe our own butts. I hope we can give you a more optimistic mind set about your diagnosis.
At the same time, we do understand your anger and frustration. There is nothing enjoyable about this disease and most of us vent these feelings here, among people who understand us, from time to time.
I believe there ARE good days and good times in your future.
Mary
It kind of sounds like you are still in panic mode about your diagnosis. It's often extra hard to come to terms with a diagnosis when a person has experience within the health care field. Once your roid rage is chilled take a little while to adjust and educate yourself as a patient instead of a care-giver.
I understand the desire to limit drugs. They are all chemicals or toxins that have undesired effects to go along with their benefits. Still, I'm glad to not have to suck on a tree to get my pain relief chemical.
Unfortunately, a bad relapse or an agressive MS disease process can land people in a nursing home, especially if they have no one to help care for them at home. I'm sure your patients would have done anything possible to limit their level of disability and continue to care for themselves (or wish they had). Thank you for helping them when they needed it.
There are many of us here on the forum beyond the ancient age of 50. Quite a few have had MS for many years. Several continue to work. Almost all of us can still wipe our own butts. I hope we can give you a more optimistic mind set about your diagnosis.
At the same time, we do understand your anger and frustration. There is nothing enjoyable about this disease and most of us vent these feelings here, among people who understand us, from time to time.
I believe there ARE good days and good times in your future.
Mary
K, thx MS and my screwed up eyes.... I noticed grammatical errors!! People chewed willow bark...... Any " dint"'s are " don't"
Thx for the reply. I'm not saying I'm a junk food junkie, or alcoholic! I'm actually a nurse! I just meant I lived a normal life.. Beer on weekends, BBQ's, hanging out with friends. My first solu- medrol tx has left me agitated, aggravated, unhappy, moody..... And just would like to leave my kids and husband and get my own place!! I dint want anyone talking to me right now cuz I have enough voices in my head! I talk to myself enough! I had 2 residents in the nursing home I worked at with MS. Neither can wipe thier own butt, and both are >50!!! I'm just saying, I already feel like crap, the meds for MS have side effects! If alternative tx would help, why not try! AND.... Many doctors do NOT endorse alternative tx cuz they are ignorant to it! Back in the day, people would chew the bark of Willie trees for pain...... That's where we get aspirin from. Many other drugs, like digoxin, come from plants! Thx again for the reply!
Well, nobody will stop you, but if you want info as to whether these fight MS, the answer is a solid NO.
Some of these may be comforting, and that's always good. However, the only treatments scienfically shown to be effective in fighting disease progression are the CRAB drugs--Copaxone, Rebif, Avonex and Betaseron. There are ways to lessen, and virtually eliminate, for most patients, the CRAB side effects.
I am not castigating you for drinking alcohol, smoking cigarettes or eating junk food. We are only human, after all. But if you do these things, which are far more harmful than the MS drugs, I urge you to consider a good MS treatment as well.
Read up on all the facts, and make your decisions. I hope you have a good MS doctor. A good one doesn't have to 'have' MS to understand its effects.
ess
Some of these may be comforting, and that's always good. However, the only treatments scienfically shown to be effective in fighting disease progression are the CRAB drugs--Copaxone, Rebif, Avonex and Betaseron. There are ways to lessen, and virtually eliminate, for most patients, the CRAB side effects.
I am not castigating you for drinking alcohol, smoking cigarettes or eating junk food. We are only human, after all. But if you do these things, which are far more harmful than the MS drugs, I urge you to consider a good MS treatment as well.
Read up on all the facts, and make your decisions. I hope you have a good MS doctor. A good one doesn't have to 'have' MS to understand its effects.
ess
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