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lebelvedere 09-17-2010 09:15 AM

Quote:

Originally Posted by doxiemama (Post 695757)
Hi Tom,

I hope you get a diagnosis soon. I guess I was lucky, it only took 5 months for me to get a diagnosis and I got on MS meds right away. I had a spinal tap too, but again, I was lucky, it didn't hurt either. Neurontin never helped. The only side effect I've had with the Lyrica was in my mouth. I felt like the skin in the inside of my mouth was getting stuck in between my teeth. I always wanted to floss. According to my dental hygienist, it was from the Lyrica, and told me to chew sugarless gum. Orbit Mist (my son found it for me) is wonderful and is especially for dry mouth. My neurologist prescribed the Lyrica, Cymbalta (which is also an anti-depressant) and Elavil (which is also an anti-depressant). My Pain Specialist agreed with my neurologist on my course of treatment. The oxycontin does help a little. But it is a opiate and makes me feel spacy, so I don't like to take it. Nucynta is also an opiate. My comment on the diagnosis of secondary multiple sclerosis is that it really doesn't change my treatment and since I am steadily getting worse and multiple sclerosis is a degenerative disease, having them say it is secondary ms doesn't really make a difference. By the way, a cane and a walker helps the fatigue and the pain. Doesn't make it go away, but every little bit helps. That's why they were invented.

I just lost my second wind, so I'm going to relax and hopefully finish the book I've been reading before I forget what the book is about.

Good night.

Doxie

Hello, Doxie: if only my posts were as informative as yours!

Yes, Lyrica gives me the "dry mouth syndrome" too. The problem is, it does it while I'm asleep, so I can't chew gum. I will keep your suggestion in mind, as things can always change.

This is my 2nd day of only 75 mg of Lyrica (I'm trying 1 pill only per night). I have been feeling absolutely exhausted, head in the clouds, etc., so had to try SOMETHING. However, already I feel "something" in my ankles, where most of the pain was concentrated before. I'll know in a few days, maybe.

2 important questions: (1) you noted the ocycotin (opiate) makes you feel sleepy. What would happen if you took it only at bedtime? Would you not go to sleep easier? I could use something to make me sleep, but not if I feel groggy during the day. Thanks.

(2) Do the anti-depressants give you energy? Do you need BOTH of them?

Frankly, a cane wouldn't bother me. Fred Astaire, and all that. No, Alffe, I haven't forgotten Michigan J. Frog; he has a cane, too, even though he doesn't need one.

SSSSOOOOO sorry your condition, Doxie, is slowly getting worse. Maybe, just maybe, if they can slow it enough, some sort of cure or improved treatment will become available in the meantime.

Bestest, Tom

Addy 09-17-2010 11:30 AM

Quote:

Originally Posted by Alffe (Post 695850)
Life happened to you...and with it came change and growth..not a bad thing but change is always hard!! :hug: Regrets? Sure, some.....

Naw, no regrets...oh, ok...maybe a few... but I can't find them anymore..

... a mental illness made my world crash down around me...
because of that... I'm who I am today :)
........
Same with Tom... except his is a physical illness... which brought him to be who he is today...

I predict that Tom will not regret finding this forum :D

Mark56 09-17-2010 12:44 PM

Prediction Came True..... I Believe
 
Quote:

Originally Posted by Addy (Post 695905)
Naw, no regrets...oh, ok...maybe a few... but I can't find them anymore..

... a mental illness made my world crash down around me...
because of that... I'm who I am today :)
........
Same with Tom... except his is a physical illness... which brought him to be who he is today...

I predict that Tom will not regret finding this forum :D

Hi Addy and Tom- Seems to me the thoroughly informative and thought provocative posts of Tom speak for his feelings about the forum. I am surely glad to have Tom among us here! What a blessing to consider ALL Tom brings before us, n'est ce pas?

Going to visit my Dad for his 79th birthday today. A long trip. Due to the trek, I do not know whether I will be on for a couple of days. Hope Dad remembers me despite his accelerating descent into Alzheimers, that is and my wife and children. In a way we are going wondering if we are saying goodbye while he can still communicate with some clarity......

Blessings on you all,
Mark56 PJ :)

doxiemama 09-17-2010 01:13 PM

Quote:

Originally Posted by lebelvedere (Post 695864)
Hello, Doxie: if only my posts were as informative as yours!

Yes, Lyrica gives me the "dry mouth syndrome" too. The problem is, it does it while I'm asleep, so I can't chew gum. I will keep your suggestion in mind, as things can always change.

This is my 2nd day of only 75 mg of Lyrica (I'm trying 1 pill only per night). I have been feeling absolutely exhausted, head in the clouds, etc., so had to try SOMETHING. However, already I feel "something" in my ankles, where most of the pain was concentrated before. I'll know in a few days, maybe.

2 important questions: (1) you noted the ocycotin (opiate) makes you feel sleepy. What would happen if you took it only at bedtime? Would you not go to sleep easier? I could use something to make me sleep, but not if I feel groggy during the day. Thanks.

(2) Do the anti-depressants give you energy? Do you need BOTH of them?

Frankly, a cane wouldn't bother me. Fred Astaire, and all that. No, Alffe, I haven't forgotten Michigan J. Frog; he has a cane, too, even though he doesn't need one.

SSSSOOOOO sorry your condition, Doxie' is slowly getting worse. Maybe, just maybe, if they can slow it enough, some sort of cure or improved treatment will become available in the meantime.

Bestest, Tom

Hi Tom,

Oxycodone only masks the pain when all else fails. It puts it farther back in my consciousness so that I can try to read, watch tv or a movie or have a conversation with someone and my focus is not on the pain. I usually only take it in the late afternoon and evening when all else fails. I try meditation focusing on my breath first. It doesn't always work. Sometimes I have to write down when I can take it again. Because I have chronic fatigue, a common symptom for ms, I take provigil (there is also nuvigil and some use ritilin). It doesn't make me energentic, far from it, but at least I feel more functional. None of my meds make make me sleepy. I have to take something for that. Even though I feel like a walking pharmacy and a guinea pig, I am constantly talking to my doctors trying to downsize my never ending list of drugs.

I lost over 20 lbs. I'll never be the weight I was in my 30's, but my cholesterol is under control for the first time in my life. I try to be the healthiest person I can with ms. I try to exercise at least every other day. I try to pace myself. I have tried to develop a good support system of family, friends and doctors. I try to be as independent as possible. I try to pace myself. Don't get me wrong, my life is not perfect. I have my share of down days, negative feelings and at times feel my support system can be better, but then I try to get a better perspective and change the things I can. I adjust and adapt. I still have a life. I definitely can't do what I used to, but I try not dwell on it.

Thanks for your concern and support.

Doxie

lebelvedere 09-17-2010 01:34 PM

Quote:

Originally Posted by Alffe (Post 695850)
Life happened to you...and with it came change and growth..not a bad thing but change is always hard!! :hug: Regrets? Sure, some.....

Alffe, change is inevitable except when it comes from a vending machine.

Tom

doxiemama 09-17-2010 01:37 PM

Quote:

Originally Posted by lebelvedere (Post 695864)
Hello, Doxie: if only my posts were as informative as yours!

Yes, Lyrica gives me the "dry mouth syndrome" too. The problem is, it does it while I'm asleep, so I can't chew gum. I will keep your suggestion in mind, as things can always change.

This is my 2nd day of only 75 mg of Lyrica (I'm trying 1 pill only per night). I have been feeling absolutely exhausted, head in the clouds, etc., so had to try SOMETHING. However, already I feel "something" in my ankles, where most of the pain was concentrated before. I'll know in a few days, maybe.

2 important questions: (1) you noted the ocycotin (opiate) makes you feel sleepy. What would happen if you took it only at bedtime? Would you not go to sleep easier? I could use something to make me sleep, but not if I feel groggy during the day. Thanks.

(2) Do the anti-depressants give you energy? Do you need BOTH of them?

Frankly, a cane wouldn't bother me. Fred Astaire, and all that. No, Alffe, I haven't forgotten Michigan J. Frog; he has a cane, too, even though he doesn't need one.

SSSSOOOOO sorry your condition, Doxie' is slowly getting worse. Maybe, just maybe, if they can slow it enough, some sort of cure or improved treatment will become available in the meantime.

Bestest, Tom

I just realized that I didn't answer all your questions. Both anti-depressants are also used for pain, which is why I use them and yes I use both of them because each one alone was not enough. I started on lower doses and reached the maximum dosage slowly after the lower doses were ineffective. I used the term opiate, not meaning making me sleepy, but meaning that they can become addictive. The best medication that I found for sleep is edluar. It's a little pricey, but very effective. No, the anti-depressants don't give me energy-I wish.

Hope I didn't forget anything this time.

Doxie

Alffe 09-17-2010 02:13 PM

Quote:

Originally Posted by Mark56 (Post 695928)
Hi Addy and Tom- Seems to me the thoroughly informative and thought provocative posts of Tom speak for his feelings about the forum. I am surely glad to have Tom among us here! What a blessing to consider ALL Tom brings before us, n'est ce pas?

Going to visit my Dad for his 79th birthday today. A long trip. Due to the trek, I do not know whether I will be on for a couple of days. Hope Dad remembers me despite his accelerating descent into Alzheimers, that is and my wife and children. In a way we are going wondering if we are saying goodbye while he can still communicate with some clarity......

Blessings on you all,
Mark56 PJ :)

Have a safe trip Mark and don't overdo! I pray your Dad knows you but remember that you will always have that "heart" connection. We'll miss you. :grouphug:

Alffe 09-17-2010 02:14 PM

Quote:

Originally Posted by lebelvedere (Post 695956)
Alffe, change is inevitable except when it comes from a vending machine.

Tom

Ok, Ok, I get it! You're a frustrated comic! LOLOL! :D

lebelvedere 09-17-2010 02:39 PM

Quote:

Originally Posted by Mark56 (Post 695928)
Hi Addy and Tom- Seems to me the thoroughly informative and thought provocative posts of Tom speak for his feelings about the forum. I am surely glad to have Tom among us here! What a blessing to consider ALL Tom brings before us, n'est ce pas?

Going to visit my Dad for his 79th birthday today. A long trip. Due to the trek, I do not know whether I will be on for a couple of days. Hope Dad remembers me despite his accelerating descent into Alzheimers, that is and my wife and children. In a way we are going wondering if we are saying goodbye while he can still communicate with some clarity......

Blessings on you all,
Mark56 PJ :)

Hello, Mark and Addy and ALL the others: if you get one tenth of the pleasure out of my posts that I do out of your company, we will get along fine.

Have a good safe trip, Mark. My mother died at age 79 in a nursing home. Sometimes she recognized me, sometimes she didn't. OR SO IT SEEMED! During 4 years of her "incarceration," I came away many times with the thought: Who knows what they know? Who sees what they see? Just when I was about to give up in frustration, my mother would say or do something remarkable. Remarkable...isn't it!?

Bestest to you and your family, Tom

MelodyL 09-17-2010 03:11 PM

Tom:

Have you ever tried BIOTENE? It's for dry mouth syndrome.

Melody


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