Again, I choose no treatment!

[Auspiciousme]

Hello everyone.  I came here a while ago and asked what made you choose MS treatments.  You were all very kind and gave me your thoughts about MS treatments and meds.  I must say, I was leaning towards MS treatments after reading everyone's posts.  Since last week I am experiencing a mild attack (right leg hurting and all tightened up plus skin pain & dizziness).  On Thursday I saw my doctor for my annual check up.  He did the normal checks, walking on a line and touching this and that...,etc and everything was normal.  He asked me if I was feeling bad enough to get on steriods and I said no.  Then I discussed starting treatments with him and asked him my questions.  He said the meds are pretty much the same and I get to choose which one I want based on the amount of shots I am willing to take.  He said the studies have been only for two years on each person and the meds show reduction in the number of attacks MS patients get but they really haven't pooven that the meds would do anything as far as the course of MS goes.  I told him that since I was diagnosed two years ago, I haven't had any major symptoms and I really don't like taking harsh meds and he said that in that case, I shouldn't!  He said if my symptoms and attacks are not bad enough to interfere with my day to day life, then I shouldn't do the treatments.  I asked about natural treatments and he said there is no proof that natural treatments have been helpful.  That night, I attended a MS Society seminar called MS & Meds which was about MS and available treatments.  The speaker was a retired Nuro and he spoke about MS and it's effect on nerves and then all the available meds.  He didn't really explain, how the medication helps the process of MS.  He did say that it reduces the number of attacks.  He also said that they all have side effects but he really didn't get into it.  When I told him what my doctor had said about not getting treatment, he was surprised and said "he should get his head examined!!!"  He said it is essential for all MS patients to get treatment.  But the funny thing was that every time he said what MS does to you, he siad "well, whether you take meds or not, you will eventually do this or that and you lose this or that".  I think all the people that were there were on different treatments.  & I would say half were using some kind of assistance for walking.  The few that I talked to had major reactions to some meds.  A young man had brought an artical about a MS patient that just had died because of PMI and Tysabri and he said he was getting off all treatments.
So, I came out of the seminar with anxiety and fear.  I was feeling all kinds of things.  What should I do?  Meds or no meds?  I know MS patients that are on treatments and are doing poorly and I know MS patients that are not getting treatment and have altered their eating and excercise habits and are doing wonderfully.  The side effects seem endless when I read about each medication.  After taking years of these meds, what's left of your liver and kidneys and ...?  How do we know that some of the symptoms a lot of MS patients feel after years of using these drugs aren't because of these side effects? When you drink lots of alcohol, you throw up, right?  What does that mean? Doesn't that mean that you have intered "poison" into your body and your body is reacting?  So how come we don't think about how our body reacts when we enter all these chemicals in it?  
I want to say that I am not against meds at all.  I know that sometimes you have to take medications whether you like it or not regardless of what side-effects they have.  & I respect the decision that some of you have made to take meds.  I just feel like meds are not for everyone.  In my case, because I am not feeling so bad, I think I can try to create a healthy invironment in my body so my body can heal itself or at least not get worse.  For now...I am choosing no treatment and I am going to follow Ann Boroch's treatment and see what happens!
I think it's easier to choose medications rather than completely changing our life and that is one of the reasons we choose meds.  Our society prefers "easy" over "natural".  I am one of them...I know!  I much rather take a pill for my depression rather than excercise and avoid certain foods that would help me with depression, so I do!  But I've tried dieting before and I felt great (I am talking about Ann Boroch's MS diet not losing weight diet...(although god only knows how many times I've tried the losing weight one too!))..and it was too hard so I stopped and now I feel more symptoms.  I will try again.  If I get worse, then I will try meds...but somehow, my gut is not comfortable with meds right now...even if the healthy diet doesn't cure MS, at least my body will be healthier and if I have to start meds, I can at least tolerate them better, no?
Is anyone willing to try the diet with me?  Or do you all think I am nuts, in deneil or stupid?  Honestly, do you think eating right, excercising, meditating and taking vitamins could hurt your MS?...Would anyone be my partner to start this diet together?  (I am not asking anyone to stop treatment...at all.  That is something you & your doctor have to decide....I am just saying that could natural treatments work too?)  Anyone with me?
I am sorry, if I talked too much!  I could go and do my own thing and not bother writting here, but I feel like I should tell people about how I feel.  Maybe someone out there is feeling the same and is scared just like me and wants to explore something new?  Again, I respect everyone here and their decision whether to take treatment or not.  I am one of you...and I am afraid of what future will bring for us.  I do wish everyone the best...and I hope whatever treatment you choose really works for you.
I will keep you posted and if I am making a mistake now, I will admit it later, I promise!

[Auspiciousme]

Oh my god!  You are so wonderful!  I think I have a new family!  A family that is there & fully understands what I am going through.  No judgement.  Wow...thank you all soooooooooo much.  You have no idea how much this means to me.  I found out that my Neuro is not board certified last night.  The speaker (doctor) at the MS meeting said that it is very important that I see someone who is board certified and sees lots of MS patients.  So, I am calling for another doctor for 2nd opinion for meds.  (as you recall, my doctor didn't insist at all for me to take meds)...I will see what he recommends...and then I'll get on them.  I am gonna be tough like you all!  Thank you all so so much.  

[GrannyJo6]

Oh, good for you! I am also very sensitive to even over the counter meds, and I have had very little problem with side effects with Avonex. That is the once a week dose, so I only have to take NSSAIDS once a week. I also have had depression and anxiety attacks and there has been no effect from Avonex. However, one of the side effects of the DMDs (at least Avonex) can be depression, so my neuro suggested an antidpressant also.

If you aren't seeing a neurologist who specializes in MS, that would also be my suggestion. I am seeing one of the top docs in this area. His wife has MS so he has quite the vested interest and personal experience with the disease!

This is a huge step in our lives and I can certainly understand the anxiety and fear - been there, done that! Keep us posted about your choice and when you are ready to begin we will be praying for you, cheering for you and sending you hugs galore! Jo

[risnerrose]

As if to drive the point home . . . I posted the above comment, returned to the forum, opened the thread with a DMD poll, and immediately began questioning if I made a mistake in selecting Betaseron :)  Oh well . . . gonna block out my doubts and move forward!  

I'll not sign this time . . . since I signed out twice on the above thread :)

[risnerrose]

Within the past month, there have been several discussion threads on selecting DMDs.  I know that Opie and I are both about to begin meds . . . and I'm sure there are others.  I'll try to bump a few of those threads back to the front page for you, since they have links which might help you decide.  I have similar concerns about the symptoms and the use of tylenol etc.  Copaxone does not list depression, liver issues, or flu-like symptoms; however, my neuro recommended Rebif or Betaseron.  I chose the later.  My dosages will be titrated in the beginning, and the nurse said this worked well to minimize those flu-like symptoms.

I'm "blocking" my fears right now . . . but I do have them . . . along with all of the "What if's?"  (What if I've been misdiagnosed?  What if I never progress - even without meds?  What if I become depressed? What if ????)  Of course, those are followed by "What if I wake up one morning unable to see or walk or both????"  What if my children have to care for me?  These possibilities scare me the most!!!

I just want you to know . . . you're not alone.  I'm scared, full of doubts and questions, and pray I'm making the right decisions.

I'm a few weeks ahead of you in this process . . . so if I can help more just ask or PM me.

Sherry

Sherry

[JennyO63]

YAY!! Fight, fight, fight this horrible disease!!! And if you need encouragement, we are all here for you. "Let it come toward you", my friend's mom used to tell us when we were young and anxoius about something. This same woman was a serious health food person, a dance instructor, and would compete in Dance competitions ballroom style. Despite her lifestyle of good nutrition, exercise, meditation, and well being, she contracted Pancreatic Cancer of which she survived an amazing 18 months with. Imagine the grief of her daughter, my best friend~ how can cancer happen to someone so vital and healthy?

So in the spirit of Mrs. Janice Levit-Ireland, "Let it come toward you". Face your fears head on, we are here to cheer you on!!!!!!!

                                      May God bless you

                                             JennyO63

[Auspiciousme]

Thanks Shell.  I am not sure if you should be proud of me yet!  You have no idea how much I am afraid of these drugs.  I am pretty sensetive to even Asprin!  How the heck am I gonna tolerate flu symptoms and all kinds of other symptoms?  I am not any more special than anyone else here and I know most of you here take the meds and don't complain as much as I have already!  I am just scared.  Which med are you on?  Side effects?  Which one should I start with?.....I already have bad depression and panic attacks, so I need something that doesn't make me worse?
Thank you so much for your note.  I haven't reached peace yet...but I am working on it.