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Sun Apr 22, 2018, 11:50 AM

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This message was self-deleted by its author (CountAllVotes) on Tue May 1, 2018, 06:47 PM. When the original post in a discussion thread is self-deleted, the entire discussion thread is automatically locked so new replies cannot be posted.

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Reply This message was self-deleted by its author (Original post)
CountAllVotes Apr 2018 OP
c-rational Apr 2018 #1
elleng Apr 2018 #2
CountAllVotes Apr 2018 #3
CountAllVotes Apr 2018 #15
Eliot Rosewater Apr 2018 #4
CountAllVotes Apr 2018 #5
Eliot Rosewater Apr 2018 #6
elleng Apr 2018 #7
safeinOhio Apr 2018 #8
CountAllVotes Apr 2018 #9
marybourg Apr 2018 #10
CountAllVotes Apr 2018 #11
marybourg Apr 2018 #13
CountAllVotes Apr 2018 #14
marybourg Apr 2018 #16
CountAllVotes Apr 2018 #17
CountAllVotes Apr 2018 #12

Response to CountAllVotes (Original post)

Sun Apr 22, 2018, 12:09 PM

1. CountAllVotes...I can't help with the med question but I would say regarding depression and being

at wits end, take three deep breaths and focus on positive thoughts. Challenge any negative views. Also, watch happy programs and nature shows if you cannot get outside. I don't take meds but 0.5 mg does appear to be a small dosage. Did you have any ill effects with the Valium? If not I would question why the nurse recommended the change. We are all fed so much false information. Also ask your pharmacist, especially if you know that person for a long time. Be well and stay in the present, i.e. don't let the mind run off into what ifs. Also ask your neurologist if you can and turn some love on yourself...the last person we as human beings do this for. Best.

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Response to c-rational (Reply #1)

Sun Apr 22, 2018, 12:15 PM

2. I agree,

' 0.5 mg does appear to be a small dosage. Did you have any ill effects with the Valium? If not I would question why the nurse recommended the change.'

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Response to elleng (Reply #2)

Sun Apr 22, 2018, 12:30 PM

3. No ill effects ever

I don't even notice an effect from it until I get hit with the spasms. I take one and it works very quickly and that is pretty much the end of it.

Its all about the War on Drugs. Why now after taking something that helps for OVER 25 years? War on Drugs is why They could seriously give a fuck abt. me and I know it. Good riddance when I am dead and gone and I know it! Drain on the system = people w/MS (cash cows for the pharmaceutical industry is what we all are).

Again, afraid to take this stuff as I tend to be highly allergic to many substances and I told the nurse this. The claim is that I might develop dementia from it as there is a study out there that says this could happen (could). I don't really care to be honest w/you! Might be a blessing in disguise because I won't know WTF is going on anymore ...

There are two neuros where I live. They refuse to see me because I am not on one of the DMDs (Disease Modifying Drugs) that cost up to $15K a month and some have DEADLY side effects.

If I wanted some of this crap, they'd see me. If not, I'm stuck with a 25 year old nurse that is not a doctor that doesn't seem to enjoy her job very much. If I say I want to see an M.D., it is a negative on my record as it makes the nurse look bad so you better not do that because you'll get nothing but grief if you do!

I did ask the pharmacist about this and told him that I am fairly stable right now (had 11 serious infections last year; none at all this year so far and NO, I am not demented!). He felt it was misdirected and that I am not abusing anything and that it is wrong wrong wrong and that they should leave me alone being I am fairly stable.

I am still afraid to take one of these pills. If I fall, I have no real help, that is for sure!



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Response to c-rational (Reply #1)

Mon Apr 23, 2018, 09:09 AM

15. Why thank you

I have never had any negative effects from the Valium.

I did ask the pharmacist about this and he was sickened by my situation.

I am a victim of the War on Drugs as some people abuse this class of drugs. However, I do not and never have. It has been very helpful for me.

I took one of those Zanaflex pills yesterday. I was so doped up I passed out again at 8:00 PM and I am afraid to take more of it. I fear I will take a fall which is something that happens to me occasionally due to the MS.

Thank you for your positive vibes. I do appreciate them very much.

I walk a difficult path in life and this whole scenario is doing me no good at all.

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Response to CountAllVotes (Original post)

Sun Apr 22, 2018, 12:30 PM

4. I defer to any medical professionals here who will respond.

Valium is a very strong Benzodiazepine, very addictive and your body will have a reaction when you stop taking it, your mental health so to speak will also have a reaction, so make sure they wean you off very slowly over a long period of time if necessary.

Some can get off quicker than others.

Zanaflex is a different family of drugs from what I can tell, if it is anything like Soma which is mentioned in the research I have done, it will be helpful but yes can you make you a bit goofy, dizzy.

Based on what you have told me you are FAR better off getting off the Valium and onto this other drug, just do it carefully.

Again, I defer to any healthcare professionals.

Have you in the past year gone 7 days or longer without ANY Valium or other drugs like it? Alcohol also? Pot?

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Response to Eliot Rosewater (Reply #4)

Sun Apr 22, 2018, 12:35 PM

5. Have you in the past year gone 7 days or longer without ANY Valium or other drugs like it?

No I have not.

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Response to CountAllVotes (Reply #5)

Sun Apr 22, 2018, 12:39 PM

6. OK, so you need to be prepared for the inevitable withdrawal from the Valium.

Many healthcare folks dont know or just ignore this problem, sadly, so you will have to be proactive.


If you are told to just stop valium and take the other, try it but go hour by hour and if you feel the withdrawal kicking in and becoming too much get back to the dr. as quickly as possible. It would be nice if they would just KNOW this is gonna happen and handle it accordingly.

Often people are given klonopin as a withdrawal agent.

If they are saying just stop the valium after daily use for 25 years, then you need to know that might be a problem. If they are not preparing for that problem, then I suggest find someone else if possible.

Or just be persistent and in their face.

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Response to Eliot Rosewater (Reply #4)

Sun Apr 22, 2018, 12:49 PM

7. Valium is very commonly used, and it's strength is based on the DOSAGE.

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Response to CountAllVotes (Original post)

Sun Apr 22, 2018, 01:12 PM

8. I like second opinions.

I'd start by asking her Supervising Doctor. Make your concerns clear to him or her.

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Response to safeinOhio (Reply #8)

Sun Apr 22, 2018, 01:23 PM

9. If I say the word DOCTOR she'll get angry w/me

That could be a very bad thing for ME.

There is a doctor shortage where I live. I'm lucky to have this "nurse" I am told.

My insurance cost is very high however - like about $25,000 yr. for two persons.

I think I deserve more than a nurse.

Thanks for the advice. I'll do just that. Falling and breaking something at my age could be the end of me. They know it and so do I.

I told the nurse that the MEDICATION was RX'd to me by a very well known neurologist that recently retired but that doesn't matter to this nurse. I signed their War on Drugs agreement(s) as well.

I am so sick of this.

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Response to CountAllVotes (Original post)

Sun Apr 22, 2018, 02:48 PM

10. I think someone with MS should be

regularly (say once a year if stable) seeing a neurologist. Is it possible for you to go to the nearest university or major medical center once a year? It sounds like you have sufficient insurance.

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Response to marybourg (Reply #10)

Sun Apr 22, 2018, 07:55 PM

11. I tried to do this

Last edited Sun Apr 22, 2018, 08:31 PM - Edit history (1)

Even bought a $700 ticket to get there and they cancelled the appt. & tried to dump me off some assist. prof.

It took me over year to pay that off!

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Response to CountAllVotes (Reply #11)

Mon Apr 23, 2018, 01:52 AM

13. I'm sorry you're getting such poor treatment.

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Response to marybourg (Reply #13)

Mon Apr 23, 2018, 08:20 AM

14. Welcome to the world of a disabled person

Being there is no cure nor real hope for me, you find that doctors, etc. don't want much to do with you unless you are willing to go the experimental drug/guinea pig route. There isn't much $ in it for them.

That plus the lack of doctors where I live makes it a double whammy so to speak. It is quite sickening to think that such a huge amount of $ is being put out for this type of treatment, that is what I happen to think.



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Response to CountAllVotes (Reply #14)

Mon Apr 23, 2018, 09:28 AM

16. I participate in this Group because I too have

a serious chronic disease which disables me in many ways. But my doctor allows me to reject his Rx suggestions without barring me from his practice. And since I retired TO my current home, I chose one near good medical care. Perhaps ypu could eventually do that too.

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Response to marybourg (Reply #16)

Mon Apr 23, 2018, 10:34 AM

17. I don't have any real choices

I've lived here for many years and there has been a rush of retirees moving here recently. You can buy a decent house for abt. $200K.

You can't do that anywhere else in California, nope.

I own my own home and it is set-up for a disabled person. I just had it painted which about broke me.

I don't have the ABILITY to move as I have no real help.

I feel fortunate to have gotten away from the old doctor that was a real BITCH and that is a kind word for her.

My neighbor is disabled as well. He cannot find a doctor and the clinic I go to has shut their doors to new patients so he has NO ONE to go to. That is my option, NO ONE.

It is disgusting and the powers that be are well aware of the huge problem where I live. If I were to move where would I go? WHO will help me?

Lots of questions with no decent answers.

If I had my way, I'd move to Hawaii as climate has a major effect on my condition. I cannot take the cold nor the heat so I am stuck and have a spouse in their 80s that is almost blind and deaf. He gets NO HELP either and refuses to go to the VA.

The next time I hear someone say, Thank you for your service I think I'll ask for thoughts and prayers instead!

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Response to CountAllVotes (Original post)

Sun Apr 22, 2018, 07:57 PM

12. I just got up

I took 1/2 of one pill and it knocked me out cold.

*yawn* think I'll go back to bed as I am so very tired.

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