What if you can't decide on treatment

[GracieBH]

I have had some symptoms now after years that may say I am dealing with a relapse? I have been off meds for about 4 years after a bad reaction. Now I need to get an MRI and possibly go back on a medication. I just have now spent weeks researching all the meds and I just don't have the confidence in medications. The side effects, the sites where you can't tell if the people aren't just paid to promote the medication. I guess I just am lost to what is true and what is hype. I'm overthinking, and I know it's up to me but with it or without there is a lot of scary info out there. It has given me a bad case of anxiety and worry, I spend a lot of time now just crying because I have no clue what to do. How did you all decide on meds or even going without meds using more diet or supplements?

[Myoak]

Hi GracieBH!

Please don't feel pressured in choosing a med or in declining one. No one will mind if you take your time deciding which med to take, or none at all. Usually, when I don't know what to do, I just wait. I gather information and wait for circumstances to change or a particular path becomes apparent.

As silly as it may sound to some, there is a scripture which has often helped me making choices. Essentially, it says there are many plans in the mind of man but counsel of the Lord that shall stand. To me, that means one plan is best and the others are second best. The people we meet, the material we read, the testimonies we hear, the doctors we talk to all furnish material which we put into our own personal sifter to keep what makes most sense for us individually.

Age, severity of disease, etc. there are many factors taken into consideration individually. No one size fits all when it comes to MS meds. Each DMT has plus and minus features.

It is possible the newest drug Mavenclad may be a good fit for you... I understand it is given as follows... Take one pill a day for 5 days. Wait two weeks then repeat by taking one pill for five days again. Wait one year and take one pill for 5 days and that is it.

Personally, I would opt for HSCT in a heartbeat if that were possible. Next would be Tysabri. After that, a coin toss or dart board may be as good a way to pick as months of study.

There beneficial things you could try while you are making up your mind about taking an approved DMT.

Alpha Lipoic Acid has medical evidence of having benefit in MS. 300mg twice a day is what many take, including me.

Also, LDN has benefits, also.

Diet, intermittent fasting regenerates stem cells, we know that.

If you have a problem with recurring infections you may want to check out the Wheldon Protocol. I know one lady who used to get infections, often serious infections frequently, and now she is having spectacular success on Wheldon's Protocol.

There are many other things MSers are using. My guess is that alternatives are as hit or miss as the approved DMTs.

By that I mean response is always an individual matter.

Gracie BH, It is perfectly okay to try the alternative things other MSers are using while you take time to make up your mind. Maybe they won't work worth a crap and that knowledge may help spur you toward one that will help.

Or, your body may respond so well that you decide to postpone starting a DMT right now.

If your new MRI shows new lesions or new activity your doctor will rightfully make the case for using DMT in order to tamp that inflammation down before it causes additional clinical problems.

Most MS meds suck. But MS sucks, too, and often worse than the med.

You doctor will have good advice. Tell him/her exactly what you are thinking... doubts, fears, or whatever it may be so he can be right there in your thoughts fulfilling the reason he became you doctor.

If you MRIs are stable you may reasonably want to forgo a immediate DMT and try one or more alternatives mentioned by others.

Please be at peace. Don't expect perfection. Your best is all you need to be doing, not perfection. Relax and smile and let your heart be at peace. You deserve it! May you enjoy peace like a river in your soul.

[Jules A]

It is overwhelming if you are looking at them all without assistance from your physician. I would discuss with them and then further research their top recommendations based on your specific case. I like this site as most of the feedback you will get, although anecdotal, is from people who actually have MS and can provide their experiences with the different medication. Results and tolerability vary but I like hearing from others with first hand experience in addition to the research statistics. Check out the medication section here.

When anxiety is considerable that can make trying a new medication even more difficult because the increased sensitivity both on a physical and emotional level bring awareness and concern to even very minor changes. Try to keep that in mind and consider the overall risks vs benefits.

When I can't decide on one path I believe that indicates either would be a sound option to start with and if not successful I move on to plan B.
Good luck.

[Jennaly16]

It is definitely overwhelming with all the options out there.
Last year I met with my neurologist and my mother (I wanted another opinion, i was just diagnosed and in a huge fog) to go over all the options i had. I did some research before going in to the appointment and i definitely went in thinking i would go one way but after the discussion i left going another.

A year later i had to meet again and chose another path. Keep in mind what you want life, the ability to balance and what you can handle. I chose Tysabri because i heard how great it was. Don't get me wrong, the medication was great but after a year i realized every four weeks going to get an infusion wasn't fitting into my lifestyle with trying to work and raise a family. Plus, my veins didn't appreciate all the needle pokes. So i say it wasn't the medication, it was the process and i couldn't handle it.

Last week i switched to Mayzent. I figured one pill a day may help with the balancing of life, work and family. Plus a huge cut back on going to the doctors. Time will tell if i made the correct decision.

Talk with your neurologist and don't think of just the medication itself but also the process of getting it and can you handle it.
Good luck and hope whatever you chose works for you!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[pennstater]

Hi Gracie,

It can be overwhelming. I guess the first thing I would do is rule out any type of drug that may be related to the one you had a reaction to. After that, I would look at the efficacy of the drug - what has the best rates for preventing relapses? Then look at the benefits/risk and see if it is an acceptable risk tolerance for me. If not, I would look at the next most effective drug and see about the benefit/risk analysis until I am comfortable.

What would I look at for benefit/risks aside from the effectiveness:

1. How convenient is the drug for my lifestyle? Can I see myself adhering to the dosing schedule. It does no good if I don't take it.
2. What are the common side effects?
3. Are there additional medical risks with taking the drug and if so, are there mitigating factors?
4. By taking this drug, does it then preclude me from taking another drug if this one does not seem to be working for me?
5. Is the copay realistic for me? If not, what type of assistance is available?

Use your doctor's office resources to help you answer some of these questions. I have asked doctors if i was your spouse/child, what would you recommend and why?

I hope you feel better soon.

[KoKo]

Hi Gracie

I have had some symptoms now after years that may say I am dealing with a relapse?

If your MS is longstanding, it's also possible that symptoms could be due to SP (Secondary Progressive).

In any case, I would wait to make any decision until after you have the results of your MRI and discuss with your neurologist.

Wishing you peace of mind until then.

Take Care

[MyGirlsMom]

Hi Gracie!

This is such a difficult decision and I am going through the same process. My MRIs have been stable but I have had some flares and progression this past year so I need to get back on something. (Had been on Copaxone for 7 1/2 years but lost injection site locations.).

For me the fear of the progression along with symptoms and pain has become worse than my fear of meds. That is where I am right now. I am getting some second opinions at the end of the month and if they agree, I will start Ocrevus in August. Yes, I am petrified as I am not a drug person (even OTC pain relievers) but I have to try something.

Check out the YouTube videos from Dr Boster in Ohio. His videos were really helpful for me in this process.

Just remember, whatever you decide, you can always change!! Hugs! And keep us posted...I will do so too! MGM