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!

[JennyO63]

I am a homecare hospice aide for cancer and Multiple Sclerosis. I can tell you, you must make sure to get a doctor you are 100% comfortable with firstly. Keep a pper list of the supplements you take. I would suggest a small spiral notebook to write down how you feel each day and bring it with to the doctor,

As for your hesitance in using prescription meds, alot of times, the cure is worse than the cause. Remember, you have a disease with no known cure. Yes, Tysabri does have deaths associated with it and I am wary of it. Beta Seron drugs basically prevent you from getting worse as rapidly as you will without meds. My patients both use Beta Seron 1b 0.3mg every other day. The first few months you start it, eat saltines and water to curb fluish side effects. My patient tried quitting his shots and relapsed within two weeks. He started MS drugs at diagnosis in 1983, was in a wheelchair by 1999. A friend of his from the MS Bash party his age was in a wheelchair in two years~ he refused his MS meds. You will see many people call MS "that ******* disease". Read any of Montel Williams books~ the talk show host. He just had to retire from TV due to his MS~ 6 years after his diagnosis. Montel was physically fit, a former Navy seal, and a wonderful man. I bought his book "Mountain, get out of my way" and he signed it for my patient back in MA.

Check out MSAA.org. They can supply you with things you will need as your body numbs out. Areas of numbness moves around your body. Live your life day by day. Remember=SRESS IS PIOSON TO MS patients. It will bring on flareups sometimes!
Bless you with whatever decision you make.

                                             JennyO63

                           MS Society Patiet Advocate

[Quixotic1]

Well, it would appear that you have gotten some education, but are still acting from a standpoint of fear.  There have been less than half a dozen deaths from Tysabri throughout the world, yet the report of "one" instilled fear and anxiety.  Tysabri is not one of the meds you would be choosing now, as it is reserved for those whose MS has taken an aggressive course.  We have people here whose disease seems to have been turned around by this drug.

I believe to really balance this out you should talk to 5 people in nursing homes at a young age from MS and ask them if they had had a chance to slow their disease would they have taken it.  You seem to be focusing on side effects of meds and not on the potential devastation of this disease.  That is certainly your right, but I think you owe it to yourself to expose yourself to the bad side of the disease also.  People at a seminar - even in a wheelchair - are well enough to make it to the seminar.  You have not yet seen the bad side of MS.  

The info that we only have 2 years of experience is false.  We have formal studies now of 4+ years and 16 years of experience with a couple of the meds.

You describe the interferons a "poison."  Nothing could be farther from the truth as interferons are a substance that is naturally produced by the body's immune system to help it do its job!  Choose the course you want to with your life and with your body, but please don't mischaracterize the nature of the meds to make you feel more comfortable with your decision.  I write this for the others that read your statement and could be misled.

I stand down now, as I realize your post was an invitation to diet and exercise along with you.

I wish you luck with your decision and hope you find allies in your quest for health.  And I pray that your MS remains benign.  Certainly a healthy diet and exercise could also augment a person on an MS drug.

Quix, MD

[Engineer75]

Hi,
I'm a 33 year old used to be completely healthy male that about ~2 months ago I suddenly had blurred vision and they diagnosed my with retrobulbar neuritis(A kind of optic neuritis), I also had some involuntary movements that now receded much. All the Neuros that examined me thus far (very famous ones) have stressed that my involuntary movements are not related to MS because it started suddenly and in different limbs.
So basically what they tell me is we don't know and you have to wait and do more tests and even more tests may not be definite so basically you have to wait. I understood that in this forum people like me are called LimboLanders but I think even those that are diagnosed with definite MS are not in a more definite Land than I am because even if one is diagnosed with this horrible disease it can't be said what happens to him/her. He/She  can be on wheelchair in five years from now so I may be. He/She can live with no or minimal symptoms in 10 years from now so I may be.
the problem is even best specialists in this round world can't tell you much about this disease. All they can give you is some vague statistics based on destiny of a few hundreds of people taking different paths.

Now I agree with some parts of your post and I disagree with other parts.
I agree that obviously being optimist and and seeing full half of the glass can have adverse effects on your destiny. My neuro told me in my current life style( I  do not have many risk factors like smoking,...) stress is the worst enemy of mine and it can deteriorate the disease significantly. He said it is a known fact. He couldn't give me some numbers and I couldn't find either. but they say best established drugs can slow this disease by 30% or something near that figure. So it is silly if someone take these drugs that have many side effects and at most can slow this disease by 30% and have so many stresses that speed up disease by let's say 40%.  
I remember once a physician friend of mine told me that there are some illnesses that are called psychosomatic diseases and if amount of stress exerted on someone exceeds a limit most probably he/she develops a psychosomatic disease that could involve heart, kidney,....
There are some fairly safe vitamins and food stuff that are suspected they could improve this disease prognosis. Like vitamin D and B1.
Even I read an article that explained exercise has positive effect on slowing progress of this disease.
All I'm saying is there are things that can be done without side effects and even if they  do not affect MS they can definitely have positive effect on your general health.
In fact my neurologist recommended me to take vitamin D, B1 and also consume withe meat. I'm doing this and I have changed my life style a lot. I plan to restart Karate(my neurologist didn't recommended this but I plan to start it without making myself too tired) and maybe I go to a swimming class(recommended by my neurologist) when whether got warmer(I hate cold water), I have lot of other plans,...
So till now I mostly agree with you,...
now things that I don't agree with you
First I went to the website of this lady who you are using her diet and she is claiming that her diet has cured herself. I was expecting to see an old lady blessed by god and possibly with a ring of holy light over her head but as soon as I saw her picture I thought Ah...oh.. She is too young to claim she has cured herself. maybe she is in remission or with so much ambiguity around this disease who knows if she had MS in the first place. So I personally prefer advice of a neurologist who examined me thoroughly about what should I eat and what I should not, rather than a smiling good looking  young woman that reminds me advertisements about diets.

About medications, I think it is more delicate, about me First of all there is no reason that I think I may have MS even my last neurologist said the odds is about 20-30% in next 10-15 years. I hope I never have but I have been alerted by this visual and movement symptoms that I have experienced. I plan to watch my symptoms very closely and write down every small abnormality in my body and track them over time. I also plan to do MRI tests on a regular basis and be completely ready to take prompt action if heaven forbids things started to go wrong but If (with a little help of god) my next MRI showed that my only two plaques receded significantly or disappeared I certainly hesitate in taking drugs and would consult with many more neurologists before starting drugs.
about you basically I think neither me, neither you  do not know how bad your situation is, the best person who can decide whether you need drug or not is a neurologist. If you have clinically definite MS then I think it is wise to listen to your neurologists about what medications can best help you.
but whatever you do, do not give you destiny to some smiling commercial ads.

Take care
Engineer,

[tiffanyb2017]

Hello, I am in the same boat as you I had ON in march and 2 old lesions that showed on an MRI. about a month after this my neurologists recommended a Lumbar Puncture. I have just come back from the doctor where my LP came back negative however, my neurologist is still recommending I take copaxone 3x a week because of the ON and lesions. about 8 /9 months prior to the ON I was experiencing other symptoms extreme fatigue , numbness and tingling, night sweats, swollen glands, poor balance, brain fog etc I went to my GP and had tests one but everything came back as normal although I truly felt something was wrong. now Im stuck trying to figure out if I should start the treatment or not. I much would have rather gotten a definitive diagnosis. although I don't want to have MS its seem much better than "maybe having MS" and starting the treatment anyway. the number she gave me were something like 60% of ppl with lesion + optic neuritis get MS but I also have had history of high BP which she said could be the cause of the old lesions. she said 10% of people with proven MS have LP that come back as negative for the disease. She was not treating me during the initial issues I was having before the onset of the ON so she can not say if that was an MS episode but she says the symptoms sound like it. im so confused and I really don't know what to do. Have you started treatment even though you were not diagnosed?

[Auspiciousme]

Hello Quix,
Thank you for your note.  You are right!  I am scared to death of meds,MS, my decision and what I am up against!  I think because I am not having bad symptoms, I am more afraid of the drugs than MS!!  When I said that the MS drugs are poison, I meant that all "medications" not just MS drugs.  Even Tylonol has side effects.  I know that.  Due to what you had told me before about the interferons that are natural, I asked my doctor about them and he laughed!  He said...ya..right natural! That's where I got it! (infact, he was the one who told me about the 2 years studies as well.  Wouldn't you believe your doctor?)  But I am sure you know a lot more than I do.  I got the booklets of every single MS med and I am still going to read and research.  But I think my fear of the side effects and lack of symptoms, will continue to win against drugs.  Stupid?  Maybe.., I need to feel comfortable inside me before I can start a treatment.  & believe me, as soon as I feel a new symptom or a harder old one, I will be running to my doctor asking for drugs.  I just don't feel confident that they can do anything for me right now.
I didn't mean in any way, shap or form to tell people that their decision to take drugs is wrong.  NOT AT ALL.  I just said, it's worng for me right now.  I am like everyone esle here, just wanting to talk about my feelings to make myself more comfortable, ease my fear & find information.  I don't have the education to lead or mislead anyone.  I just truly believe that diet and excercise can help anyone.
If you aren't yet completely sick and tired of me, can you please explain to me how the meds work?  How do they help the course of MS?  
Thank you again for your note.  I really do appreciate that you took the time many times to help me out.

[Quixotic1]

I just wrote a post that talks about how interferons naturally work in the body.  If your doctor doesn't know that our own immune systems produce interferons all the time, then he needs to brush up on his immunology.  

Of course we (nor I) are not sick and tired of you.  You are facing the same thoughts and quandries that many, if not all, of us face.

I will have to leave the "how" the meds work for later.  The truth is that we don't know "exactly" how they do what they do.  We know a lot about it, but not every step and certainly not which are the most critical.

What worries me most about the decision you are making, is that there are clear data that the meds work best the earlier they are used in the disease.  Years lost early means that if you decide that you should take one later, you have lost the window of when it would be most effective.  It's something you have to take on faith after listening to as many experts as you can.  What the meds can do for you now is prevent worsening later - and that is not even guaranteed - but, in my view, it is the best game in town.

This is a topic that we need to keep open.  Believe me, you aren't the only one reading with these thoughts and doubts.

Engineer - You make some very good points.  Thank you so much for such a clear and rational discussion.

Quix

[biowham]

Man, what Quix said about interferons. They're our natural viral armament, among other things. Idiot. I'm annoyed with neuro MDs right now, which annoys me more because so many of my good friends are just GREAT doctors. I don't know what assails this specialty in particular. Yes, interferons *are* natural in that we make them ourselves. Lord, these people and their condescension are truly going to make me crazy.

There is a saying among those of us who do research related to medications: The dose makes the poison (from Paracelsus, roughly). That means that ANYTHING, given the right route or dose, can be toxic to you. Water is a great example. We need it to live, but consumed in too much quantity or inhaled, it can kill you. Interferons are not poison, per se, they are physiologically active chemical compounds that can help you, given the appropriate dose. Just as your own release of interferons in response to a viral infection can initially make you feel like **** even as they're helping you, these drugs may also have that initial outcome, in addition to their benefits. Anything has its dose at which its negatives outweigh its positives, and the key is to figure out the right balance. We usually drink the right balance of water to keep it from poisoning us, and we can do the same with interferons.

Anyway, one way you might look at this is from the perspective of cost-benefit. Just do the sheer probabilities. How many people taking Drug A have side-effects (i.e., what is the rate of the side effects that freak you out?). Now...how many people with MS progress without the drugs? Or...how many people with MS progress to Situation B without drugs (whatever disability scenario would be your cutoff for concern). How do the numbers balance out? My guess is that the numbers will register on the side of the benefits of the drugs in stopping progression or relapse outweighing any potential costs (i.e., side effects).

This is what I do, for example, when making decisions about vaccinating my children. What are the probabilities of death or severe injury from vaccines vs. the probabilities of death or severe illness from measles, mumps, rubella, polio, diphtheria, tetanus, pertussis, meningitis, etc. Yes, the side effects and reactions to vaccines can be terrifying to read about. But the potential benefits far outweigh the potential risks. So, with that cold calculation, I outweigh my maternal anxieties over vaccines and have my children vaccinated.

Anyway, it's a cold, numbers-based way to step over emotion and irrational fear (not that your fears are irrational, but the anxiety that can accompany them can make them so).

Bio

[Auspiciousme]

Hello there,
Thank you for your post.  I have seen Ann Boroch myself.  She is in her forties and she got into what she is, because of her own MS.  I have read her book and in her book she explains how awful she was hit with MS at age 24.  She was almost parapeligic but her worst symptom was not being to swallow properly.  She is super nice and super cool!  & although her visits are expensive, she gives you a handout of where to buy her recommended vitamins for less than you could buy from her...so I know she is not just doing this for money.  I actually was supposed the start Avonex, a few months after I was diagnosed.  The night before my appointment I met a lady in my gym that was using her wheelchair to walk in the gym, work out and then she would sit in her wheelchair to leave when she was tired.  I started talking to her and she said she was in wheelchair for two years and she was getting better because she was seeing Ann Boroch and was under her care.  That is how I met Ann.  I must admit that I felt great while I was on her diet.  
I agree with you that we are all in limboland!  I totally feel like I am.  I have no idea what to do and that is why I think maybe now that I don't have horrible symptoms and feel normal, I can start with diet and excercise to begin with.  My doctor agrees with me.  He said that I should wait as well which is shocking to MS community!  I can't get a straight answer from any doctor!  None of the ones I have seen, actually explain MS, explain the drugs, pros and cons.  I have seen three and all of them told "me" to choose my drug.  How?  What education do I have to choose a drug for myself?  This is one the reasons why I am so scared of drugs and choosing treatment...If a doctor would give me a definite answer on how the drugs work and what it can do to help me, maybe I would be more confident in choosing to treat my MS.  They all say every person is different and studies show 30 to 40 percent improvement.  None of them even tell you how you can help your body naturally (in addition to drugs).  Is it even possible that what we eat has nothing to do with our health?  It doesn't make sense to me.  Ann's thing is that our body has the power to heal itself.  If we stay away from what's bad for us and give our body the nutrients it needs, our body can heal.  Of course the power to heal is different depending on what stage of your disease you are in.
I am gonna try it again and see what happens.  If I get worse, then I'll do the drugs.  At least that way I know I tried all my options.
By the way, I think swimming is great.  When I had my 1st attack which led me to my diagnoses, I took up yoga and swimming.  It was great & it really helped me.  Yoga, Thai Chi and Pilaties are great for core training which helps with MS patients.
Either way, I hope you don't have MS and I hope you feel all healthy soon.  God Bless.

[essdipity]

I'm wondering what's so magical about "natural." Snake venom is natural. The law of the jungle--kill or be killed--is natural.

A good diet, regular exercise and generally healthy living are always a good idea. They can only benefit you if you have MS, or even if you don't. But there is absolutely no evidence that your disease will be lessened by following that way of life. There will always be people claiming that their way has produced miracles, and some of these people are very sincere. Others are charlatans looking to grab your money when you are at your most vulnerable. So it's a case of caveat emptor--let the buyer beware.

For my money, I have to go with the odds. I have to consider that no MS med is perfect, and all have side effects, but the "front effects" are the bottom line. By that I mean, how well do they work compared with other methods. The answer is that they have been shown in many scientific studies to be effective. Not perfect, no guarantees, not for everyone, but still on balance they do work. They at least slow disease progression in many instances, and nothing else out there does that. Moreover, the 4 CRAB drugs do not harm the body and are not dangerous.

Adults have the right and the duty to make their own health decisions, and I'm not suggesting that you have to choose the path I choose. I'm speaking more to those who are just becoming familiar with MS for whatever reasons, and are seeking accurate information. Some will be sitting on the fence, unsure, and thus make no decisions. Meanwhile time is passing, and the opportunity to treat their MS early, when the meds are most effective, will slip away. We have had so many posts here by people who either made the wrong decision or didn't even get to make any decision because of lack of diagnosis. I hope that some of these members will add to what I'm saying, and maybe explain how much they feel now about these matters.

For me, I know that few things are 100%, including the MS drugs. So I have to get the best information available, do Avonex with whatever side effects it brings, and hope for the best. Though I rely greatly on science and logic, I'm still open to other paths, but to supplement and not replace the best chance I have for the least disease.

ess

[CareBayer]

Today I was watching Unsolved Mysteries and it had a clip about this man named Edgar Cayce. He was a man who lived in the 1920's. He gave deep indepth hypnosis readings to people with various illnesses. I became intrigued and decieded to look him up. When I did looking on a site dedicated to him and his readings. I looked up MS on there and read what he said about the disease, the cause and treatments. This is the link.

http://www.edgarcayce.org/health/medical_overviews/multiple_sclerosis.asp

[opie74]

You sure have gotten a reaction from your post......

I was recently Dx.  I have 30 lesions in my white matter.  In 2001 I had 19.  The doctors said that they were caused from Migraine.  Now with 30 and the onset of symptoms, my first visit with a new Neuro gave a probable Dx.  The MRI that he ordered showed 30 leisions.  (I had one the previous year, but I had a bad Neuro)

Ok, so the new guy sends me to a specialist for a second opinion.  Weeks befor the blood work was back he spent 45 minutes discussing treatment options.  I knew that I hadit at that point.  He quoted statistics and more statistics (thank God that I am a math teacher).  Basically, as Quix has stated in other threads, lesion load is not directly related to symptom load.  I am living proof of that. (19 lesions for years with almost no symptoms). HOWEVER, lesion load without treatment is definitely linked to the speed of DISIBILITY.  I don't mean light weight stuff, serious disability.  The specialist quoted to me that if you have a significant number of lesions , 19 was significant, and you had significant increase in lesion load, 11 was significant, that he could predict disability on a time line at 5, 10, and 15 years.  

I am not saying all of this to scare you.  I am right there with you.  I bowed out of a clinical trial because I was afraid of the side effects.  I am due to start beta seron within the month.  Am I scared, H@## yes!  Will I do it, H@## yes.  After the specialist speaking my language, cold hard numbers, I can't risk it.  I saw my local Neuro on Friday.  He looked me strait in the eye and said "You do not have time to procrastinate.  We the lesion load that you have, and symptoms beginning to show up, you must act now."  I told him of my fear of the trial and he said "Don't do it."  But start one of the meds ASAP.

I think that the diet is a good idea IF done with treatment.  I don't know you lesion load, but if it is anything like mine, or is increasing as fast as mine, get the to the needle!

Keep thinking!  I am glad that I am not alone in being affraid!

[GrannyJo6]

I'm sorry you are so fearful!  I'm guessing most of us with MS are fearful from time to time about the course of our disease and the unpredictability of it.

I also have "benign" or silent MS. You would never know I have it. Most of my symptoms are pretty lightweight - odd sensations, etc. However, the odds of it progressing or of having a major relapse are more than I want to gamble with.

About a year ago I changed my eating habits and diet to one that is supposed to help with inflammatory disease and lost 25 lbs and feel great! (See journal entries in profile.) I have not decided to abandon the Avonex but see it as an adjunct to the "natural" way I am trying to live. I exercise regularly and I know I am doing all I can to fight this thing. And maybe for me, that is the most important thing - I am being proactive and doing everything I can to keep myself healthy.

I'm concerned about you. Like Quix said, sometimes you just have to step out in faith, believing that your doctors are recommending what they think in is your best interest. Perhaps another opinion would be in order?

At any rate, you must do what you feel you must do, and if you aren't comfortable about taking meds, then nothing we can say here will probably sway you. I hope you see that you are in the minority here, though!  Best wishes for a healthy new year and keep us posted on your progress! Jo

[Lulu54]

this is quite the discussion to read  - I probably have had MS for 20 years, looking back.  It only became bothersome enough this year for me to see a doctor about my symptoms.  I got my dx in Sept, and was told there was no choice for me but to get on a DMD immediately.  If I had started drugs years sooner, who knows where I might be with my symptoms.  Perhaps I could walk a straight line, stay out of the bathroom longer than 60 minutes at a stretch, and not experience the foot drop that I have on exhaustion.  

My hope with taking copaxone - a daily injection - is that these will be all the symptoms I have and nothing more will be added to my list.  This leap of faith is a hard step to take,but I honestly don't believe I have a choice if I want to stay as healthy as possible.

In addition to the DMD, I also have changed lifestyles and include regular exercise into my day.  After three months I feel somewhat better - I can only assume that it is a combination effect of the drug and exercise and diet.

Part of the reaction you are hearing from this community is because so many of these people are desperate to get out of limbo and secure a diagnosis that offers hope to slow their diseases with the inclusion of a DMD.  If they have MS, they will not hesitate at all to pick a drug and stick with it.  

It concerns me that your doctor would feed your concerns and fears with false information about the dmd's, their length of use proven to be effective, and otherwise encourage you to take a roll of the dice and chance your MS stays quiet. You said this was your annual checkup - was this your PCP or a neurologist?

Stay in touch,
Lu

[JennyO63]

Please don't get me wrong. I did not imply that Beta seron is poison. The number one POISON that negatively effects MS patients is STRESS!!!!!  When you are in the first years of MS, please go online, get a list of MS medications and a printer. Print out all the drugs, google their side effects, and along with a doctor you can TRUST, bring what you printed to your next doctor/neurologist appoitment. My patients I care for in their homes have begged me not to let their families "put them away" in nursing homes/assisted living facilities. I see what goes on there, and unfortunately, what does NOT go on there, but SHOULD! So remember, whatever your course of action, you must play the hand life has dealt you to the best of your ability, and NEVER GIVE UP!! Check out (google)the Christopher and Dana Reeve foundation website. It has invaluable information to ANYONE facing disability. They even have a free library that the Reeve children (now grown up) run. If Christopher Reeve didn't give up, why should we?????

                         Respectfully & with caring,

                                JennyO63

[JennyO63]

Please take in consideration that even chiropractic doctors like the one I see and is the dean of my school says there is a place and time for herbal therapy, but when the body's immune cells attack themselves like in MS, you need the best of both holistic healing grouped with prescriptionMS drugs. It is absolutely true that the earlier you start MS modifying drugs, the slower the disease robs your bodys functions. My holistic doctor is: Dr. John Kenny, dean of Northwest Health Careers here in Nevada. The body has tremendous power to heal itself. What I have seen all my life with my grandma, my friend now living in MA, and all members of MS Society Delaware Valley Chapter is exercise, nutrition, supplements, and prescription drug therapy keeps you able to walk up to ten years before being wheelchair and/ or walker bound. That in MS terms is a long time~10 years.

[Auspiciousme]

You guys are wonderful!  Thank you all so much for caring enough to post here and tell me all about your thoughts, experiences and opinions.  I have thought this over and I think you are all right!  I am going to do the diet and excercise and I am going to start meds!  As I had mentioned before in one of my posts, I have had my head in the sand for a while and it's time for me to accept that I have MS and I have to take drugs to help myself regardless of the side effects.  Hopefully modifying my diet and lifestyle will help me tolerate the meds better.  Eitherway, whatever will be, will be and I will do all I can to be able to walk to my son's wedding someday (he is 10 now!!!)...
Fear has stopped me long enough...It's time to face it and go on with my life.  Pitty Party is Over!
Thank you all my friends...I am so glad I came here & I am sure I'll be back with more fears and bad days but hey...that's life.  Some good, some bad...
Okay..now which med should I start with?!!!  I will start a discussion on that soon!

[sllowe]

Making a decision ushers in so much peace.  I wish this for you too.

I, too, was in denial.

Proud of you!
-Shell  

[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.

[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

[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

[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 :)

[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

[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.  

[JennyO63]

Yes, I feel as if we are family as well! See, something good does come out of this dreaded disease!! Would you have had all this support without MS? Maybe~maybe not. Oh, if I could only remember with my Migraine brain the author of one of the best and easiest books I have read on MS! The book is called "LEAN ON ME", written by a multiple sclerosis patient. She stresses, if you don't feel 100% comfortable with your doctor's advice, please seek out a second and third opinion on your question! It's your body!! One of my MS buddies in PA has my copy. She was on Montel Williams talk show (the author of Lean on me).

                          If Christopher Reeve(superman) didn't give up nor lose hope,
                                      neither can any of us!!!!!!!!!!

                           With love & caring feelings sent to you from cyberspace,

                                                 JennyO63

(My worst effected SPMS patient quote" live life day by day "with MS)

[Lulu54]

This discussion has provided a lot of really good material about DMD's and their role in treating MS aggressively.  

Please don't get hung up too much on selecting the "correct" drug - I believe the studies and long term use have shown that the end result of all four are pretty close to the same.  A large part of this selection is also based on personal preference (daily injections, versus further spaced shots), doctor monitoring, and other factors.  There is no one correct drug - if there were we wouldn't be given all these choices.  

I'm gathering from the discussions here that most MS doctors are offering their patients a couple options for drugs and then leaving the final decision to the patient. It is nice to know we have some say in our treatment, right?  

my best to all of you,
Lulu