At any cost, do not stop taking/using MS medications.
Stopping your MS drugs?: At any cost, do... - My MSAA Community
Stopping your MS drugs?
36 Replies
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Agreed!!! 😊❤🌷
Absolutely agreed, 100%
Agree
Supremo, it is Fancy. Great post Supremo! For once I totally agree with you also! Please please please never get off your DMT. If you don't like the one you're on get your neurologist and get them to put you on a different one until you're happy but don't get off of them all together. To do so is to allow your MS to run amok in your body without any checks to slow it down. The really scary part is once you see your disability increasing it is often too late to stop it or go back and repair it. Your MS is like the tip of an iceberg, you only see the small portion above the water. We cannot see what's going on with the 90% of the diseases disruptions that occur within our central nervous system until we are forced to take MRI to see what's going on. Fancy.
I have always been told by every Neuro I have seen, I think I am on my 6th Neuro now, that there is no dmt that will stop PPMS, and now with my age of nearly 63, if they ever allow the treatment of Ocrevus to us in the U.K., they will offer it to the younger ones, which is only fair in my eyes. 😊
It's a real bummer! You and I both around the same age, suddenly feel like we're on the scrap heap. Let's hope for change!! ☺
The NHS and lack of money, ! 😊
Yes, let's hope there is still money for the absolute minimum in the future. 
I am concerned about the availability of certain drugs. I am only allowed 2 months at a time of the OxyContin and with it be a controlled drug, the chemist orders it in as my prescription allows. I have only been without it once and my body is like a drug addict. Withdrawal symptoms are indescribable so that is always in the back of my mind. 🦋
After I failed my third DMT my neurologist told me we'll just watch and see what happens. At that point I found a different neuro. She immediately said we need to get you on a med!
I agree. I think wanting to quit is fine, and quitting is fine too, but you should at least schedule an appointment with your neuro and have a chat about it before you stop.
in reply to kdali
"I think wanting to quit is fine, and quitting is fine too"..I did not get you,
kdali in reply to
Well, I wanted to quit Copaxone the entire time I was on it, and I’m saying it’s ok to feel that way about your med.
There are plenty of reasons people quit their meds and some issues could be allievated with some MD counseling, before the meds are stopped, of course. Even when we fail a med, it should be taken until the next one is chosen and lined up, unless told otherwise.
Supremo I don't agree, I was on a DMT (Copaxone) for 10 years. My condition had been going down hill for the entire time. I have never had an exacerbation in my life.
The Doctors only offered more pills for this pain or that. My neurologist changed my diagnosis to Secondary Progressive. When I finally realized my Doctors did not have a clue what they were doing. I chose to go it alone and stop all medication and after a few weeks or so (it did hurt at times), I start using some of the medications I had been prescribed only as needed. I have stopped all DMTs and cut my pill intake to 6 pills a day (I am still trying to cut back). I now can sleep all night (6 hours straight). My stomach and bladder began to work again (a little improvement at a time). I am almost back to the point I was 6 years ago except my legs have atrophied because lack of use. I work full time so the physical therapies I have been offered would not fit my schedule. I hope to begin some type of exercise this summer to test if I can regain some strength. So the point of my tale is, if you have a Doctor how listens to you try to take as little medication as possible with there help.
If no one hears you, do what your body and mind tells you and don't think Doctors know everything.
in reply to normwithms
🤞
Very strange. Odd, I must say.
Weird too. Check with your Neuro if in case you might be taken as a case study sample!
Well said! Doctors do not know everything and they don't call it a "practice" for nothing.
I quit my DMT close to 10 years ago and am doing PDG in spite of it.
in reply to falalalala
😱
My insurance Company has required a PA for the Copaxone I have taken for 16 years. They are not convinced that I have MS, AS IF I just woke up New Years Day completely well and not in need of any medication ever again. I have been without it 3 1/2 weeks already. I was already too afraid of what an MRI might show to go through with it last fall. I don’t want to know how much worse it looks than it did in 2014, when the nurse called and told me that my Dr said that my MRI Results were “really bad”. It was November but she said that I could just keep my March appointment and talk to the Dr then. She told me that my MRI looked a lot worse than the MRI from 2008, with zero compassion. It was as if she was calling to tell me that I was anemic and needed an iron supplement.
The anxiety and fear that comes with the results of an MRI seems to serve no purpose, since NOTHING can be done about new damage. Scary Looking Plaques can appear on a scan, but they still might never cause actual symptoms.
When I was little, if I hurt myself my dad always said “don’t look at it.” Seeing the injury increases the pain you perceive. Your mind says “wow, I am hurt really bad”, and that increases the pain and slows down your ability to recover. If you don’t see the injury, the pain you perceive is FAR LESS INTENSE and debilitating.
Maybe that is why I am too afraid to find out how much more damage has taken place since 2014.
in reply to TracyBelle
But, this is just foolishness.
😱
You are voluntarily staying away from the reality, just because you are scared to hear the facts. Please TracyBelle .
TracyBelle in reply to
I plan to take the Copaxone (if they ever send it). The MRI copay is equal to my entire deductible, which is why I was going to get one at the end of last year. I was diagnosed in 1999, so I don’t really need frequent MRIs. The MS will be there whether I have the scan or not. My 11/2014 MRI showed damage to my brain stem, which was terrifying. But I haven’t had the symptoms that my Dr attributed to those lesions since early 2014.
In what year were you diagnosed?
in reply to TracyBelle
2014 was my year of diagnosis.
All, leave your ignorance and follow scientific breakthroughs. Always.🤐
TracyBelle in reply to
What ignorance are you referring to? Those who refuse medication or think that they are better off without it?
If you are referring to my ignoring the expense of a diagnostic procedure for a disease I already know that I have, then what scientific breakthrough am I not following? I can’t change to another DMT because of my numerous comorbidities. The results of an MRI won’t make other DMTs safe for me personally, so there really is no good reason to freak out about new lesions which may or may not ever even cause symptoms. Especially since there is absolutely nothing that can be done to change the damage once it is there.
I am sorry if I offended you, but you should always expect multiple viewpoints from people in different places along their MS journey. It doesn’t mean that either view is right or wrong because MS is so very specific to each person. Once you get 10 or 15 years in, you will understand that each person has to make these choices of how to cope the best that they can, based on their own unique set of circumstances at that point in time.
I agree wholeheartedly with you Tracy, the docs and neurologist have all said to me, well there’s nothing we can do, so why put yourself through more discomfort by having endless MRIs and tests. Blessings Jimeka 👍
You know if you want to talk to your doctor about your MRI just call him I wouldn’t wait till March it’s your body not the Nurse’s she doesn’t have MS you do speak up for your self.
Back in 2004 I knew something was wrong with me and so I googled numb hands and feet then I looked it up in a medical book it said That I either had lime disease or MS so I went and told my doctor he saw don’t jump to conclusions and I said how do I find out what I have. I was told that I had to have an MRI so I did I have so many white lessons. I dropped that doctor like a Tun of bricks there are only a few doctors who know what is going on and let me tell you that that doctor was an idiot.
If you need and want to talk to your doctor do it
Come to find out my neurologist believed I must have had MS for many years before I was diagnosed.
Good luck to you
That is what happened with my November 2014 MRI results. My Dr. is not available except by appointment. His medical ASS istant is the only way to reach him. She has been the least helpful person I have ever known besides her predecessor. Maybe that first bitch told her to be as cold as possible towards me. I have complained about this to my Dr in a letter that I gave him during an appointment, but he believes that his staff is above reproach. I would change Drs, but this has been my Dr. since 2005. The cost of copying that many years of medical records would be Outrageous, and I would have to get the new Dr to give me the exact same medications and dosages of my 12 prescriptions. It seems like an impossibility, even though he is not “in network” so my crappy Marketplace plan doesn’t pay anything towards the cost of an office visit. There are hundreds of therapists in my zip code and the surrounding areas, but the only “in network” psychologist is 28 miles away in another city.
Life blows!
I've found out many times if you have the office transfer records to another office they won't charge. I do have a disc and reports of all my MRIs and the LP done at diagnosis so if I change I will at least have that. Can you get a 'getting to know you' appt before changing to see if that dr would prescribe the same medications?
That really stinks about your doctor and especially his ASS istant my husband had one like that but he changed doctors but now he can’t stand them. I call to have his asthma medicine renewed and they say I can’t do that. But they won’t do his because they want hito have a physical. My husband has a job that he can’t just leave. It a good thing we have the same asthma medicine so he uses my inhalers
I understand your frustration.
in reply to ssdw1958
Thanks for understanding! 😊
TracyBelle in reply to
I think she was replying to me 😂, since I am the person NOT able to take my DMT because my insurance company says that I don’t need it.
The frustration is knowing that I am getting worse every day without a medication I have taken since 2002. It should really be criminal on the insurance company’s part. Making the Dr office resubmit the same information every year just makes the staff more bitchy and leaves them with zero time for helping people with their medical problems.
Supremo- I understand your frustration with opinions that vary from your own. But that is how life is- people live and die by their own choices. And there are so many people with Progressive MS, whose Drs won’t even prescribe a DMT. Just be aware that blanket statements might not apply to everyone who has MS. You should feel grateful that you have access to and insurance coverage for your DMT. BUT please realize that MS is not the same for everyone, and some people are not even allowed to try a DMT, because their MS is considered beyond the help.
Financial paralysis is a real thing! I am not eligible for social security disability because I didn’t earn enough money in the right time frame.
Silly me, I was in law school and studying for the Texas Bar Exam instead of earning SS credits by working a dead end job.
Life really is a cruel joke 🤯
in reply to TracyBelle
🤔😎👍😊
It certainly can be!
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