What if I don't want to take meds?

[missj]

Every person is unique.

My first symptoms started soon before betaseron was approved. At the time it was possible/probable dx. I remember the internist telling me that even it was MS that there was nothing he could do for me anyway. Like all of the MS patients that came before me, I would be powerless and simply wish for a treatment

The def dx came after AB and C were approved. So with the def dx came options.

The experience of having no options to changing to then having options was a big factor in my choice.

And to clarify, the bigger question for me is - Am I doing all I can to address this illness? To maximize my chances to be walking in the future?

For me I do more than just the injections. I am grateful for them but realize that they are not the magic wand to a cure.

good luck with your choices!!!

[ANNagain]

Shadiyah,

Before taking AR&C, my MS was not stable. I had lots of exacerbations. My neuro put me on a gram of IV steroids once a month. I asked to come off of that after about 8 months. She said that if I could make it through the summer w/o needing steroids, she'd put me on a DMD.

I am grateful that things were stable enough (and I was determined not to take more steroids).

Maybe if your neuro could work w you and get you stable, then the meds would make sense. It would still be a choice.
ANN

[Shadiyah]

Originally Posted by ANNagain

Shadiyah,

Before taking AR&C, my MS was not stable. I had lots of exacerbations. My neuro put me on a gram of IV steroids once a month. I asked to come off of that after about 8 months. She said that if I could make it through the summer w/o needing steroids, she'd put me on a DMD.

I am grateful that things were stable enough (and I was determined not to take more steroids).

Maybe if your neuro could work w you and get you stable, then the meds would make sense. It would still be a choice.
ANN

Ann that sounds good. I didn't even think it was a chance of getting it stable. Really thank you for that little hope. I will ask.

[Mariel]

Some will be irritated with me for pushing the Swank diet, but I HAD to go on Swank because I knew I could not try any of the MS meds. I'd already failed to be able to take Baclofen or Zanaflex, and my neuro put me on magnesium for spasticity, and that worked. Later I was dx'd with Porphyria, and now we know why I could not take a majority of meds (I can take some meds, such as the "Safe" ones on the Norwegian Porphyria Society list).

when I got another disease, Polycythemia Vera, I tried to take the meds for that, one of which was Interferon Alpha. But I could not do it without totally disabling side effects. So I quit, and I deal with this disease primarily with good diet and other healthy living rules....but I did finally take radioactive phosphorus to lower my platelets--the radiocative phosphorus (p32) does NOT affect me like the meds, but of course it has other dangers.

I recommend everyone try the Swank diet (low saturated fat) and also read labels to avoid MSG and other harmful additives, artificial sweeteners, etc.
Use your creativity to find things that taste good and don't hurt you!

Originally Posted by Shadiyah

I have injected myself before and I know some can't do that. and I really do not want to stop walking but for me it just seem to be a waste of time and money. my symptoms never go away and just seem to increase.

so I am just trying to be realistic about my situation but get some feed back from some of you that have been doing this for a long time. oh and I forgot to add that I am 51yrs old all my kids are grown and I am a grandmother to 4 I just want to be realistic.

[Shadiyah]

Originally Posted by Mariel

Some will be irritated with me for pushing the Swank diet, but I HAD to go on Swank because I knew I could not try any of the MS meds. I'd already failed to be able to take Baclofen or Zanaflex, and my neuro put me on magnesium for spasticity, and that worked. Later I was dx'd with Porphyria, and now we know why I could not take a majority of meds (I can take some meds, such as the "Safe" ones on the Norwegian Porphyria Society list).

when I got another disease, Polycythemia Vera, I tried to take the meds for that, one of which was Interferon Alpha. But I could not do it without totally disabling side effects. So I quit, and I deal with this disease primarily with good diet and other healthy living rules....but I did finally take radioactive phosphorus to lower my platelets--the radiocative phosphorus (p32) does NOT affect me like the meds, but of course it has other dangers.

I recommend everyone try the Swank diet (low saturated fat) and also read labels to avoid MSG and other harmful additives, artificial sweeteners, etc.
Use your creativity to find things that taste good and don't hurt you!

why would some be irritated with you about the diet? This is all new to me.

[Dejibo]

The swank diet has done great things for a lot of folks! its a great idea. We really need to watch what we eat. We are a nation of obese folks who are so mal nourished because there is such little nutrition in the foods we eat. Just fat, and sugar everywhere you look. Your brain doesnt like that.

My disease progress changed dramatically when I stopped the junky food. My DD is celiac so while she was living at home, every morsel was carefully prepared. When she left for college, we went hog wild! it was then that I started having some Sx. I wonder how long it kept it at bay? Anyway, we cleaned up our diet, and the raging sx are much better. I can eat home made breads, or if I want mac and cheese, we make it, we dont dump it from a box. I am pretty close to the "makers diet" which advocates eating clean, foods that come from the earth, and making your own. We eat extreme little processed foods, and maybe once every 3 or 4 years we see mcburgers. usually its because we are traveling and nothing else is out there. A normal weight watcher meal is 8 or 9 points for a full dinner. a happy meal is 13 and thats a baby box of stuff. can you imagine a quarter pounder?

[jprinz99]

Shadiyah-

Ony you can decide what you feel is the best course for you. I suggest talking to your doctor (neuro) and asking him to explain (in simple English)what (and how) the proposed medications he want to give you will work.

From all I have learned: In general, it is thought that the CRABs might delay progression in some patients with RRMS (and perhaps other forms of MS- who knows). Since we all progress differently they have yet to figure out to tell if someone progression or disability (or lack of) is just that person's unique disease process, or if it due to the medication's effect, or a bit of both IMO

YOU need to decide what you feel is right. I suggest learning more and asking pointed questions of trusted medical advisors. It is your body and your life after all. Either way, we will be fine with it

[Shadiyah]

Originally Posted by jprinz99

Shadiyah-

Ony you can decide what you feel is the best course for you. I suggest talking to your doctor (neuro) and asking him to explain (in simple English)what (and how) the proposed medications he want to give you will work.

From all I have learned: In general, it is thought that the CRABs might delay progression in some patients with RRMS (and perhaps other forms of MS- who knows). Since we all progress differently they have yet to figure out to tell if someone progression or disability (or lack of) is just that person's unique disease process, or if it due to the medication's effect, or a bit of both IMO

YOU need to decide what you feel is right. I suggest learning more and asking pointed questions of trusted medical advisors. It is your body and your life after all. Either way, we will be fine with it

I went for my appointment this morning after being in the hospital all night to find out I have a kidney stone and that they will not brake it up because it is only 4cmm.
Well anyway I get the the office and the front desk tell me that the doctor said there was no need to see me anymore???? Since you will be going to Jefferson's MS clinic you don't need to see her anymore.

Ok she is leaving the office this month so my primary wanted to get me in with Jefferson and so they said they will not give me an appointment until they get my records and my appointment may not be until July or August. I told the front desk why didn't she wait to talk with me anyway to see what I was doing? They said well she said she can see you on Wednesday if you want to come back??? No I don't want to come back since you told me what she said....

Who does that??? She is leaving and she didn't tell me that my primary did and he told me to ask her about it and when she was leaving. and I don't want to be past off to who ever is coming in the office. I have not had any sleep and now I have to wait until I calm down to get to sleep.

[Mariel]

I'm sorry you've had rude treatment. You may need to talk to whoever comes to that present clinic, even if it's unpleasant, since the appt. at the new place isn't until July or August. Swallow pride.
My comment that some people might not want to hear about Swank again is that some people feel Swank does not help--they say they have tried it and it does not help. The "not help" may be due to them having a different form of MS than those of us who have received help from the diet. Or it may be that they did not follow the diet "perfectly." Swank says one must follow it perfectly at least the first year, then can make small exceptions. Over the years I followed it almost perfectly but finally did make small modifications, such as eating more eggs than Swank advises, which is the principle modification I made. Also I added other concepts to the Swank basic concept, such as avoiding "additives" such as MSG, artificial sweeteners, and other things you can see listed as Ingredients on boxes and cans. It is hard to eat out if you are on Swank unless you keep eating at the same restaurants where you are sure of their ingredients. It does take work, but it does not deny you eating good-tasting meals!

[jprinz99]

What you are going through sounds very frustrating and I sympathize with you. Try not to let any of this nonsense affect your health or your spirit.

If anything, once you finally are at your first MS clinic appointment (after all the normal tell me this, answer that type of exam & questioning) perhaps you should gently but firmly convey that you "feel you have been handed around with no clear communication from any doctors to you - the actual patient." Stress sweetly(but firmly) that you are "sure that this won't ever happen here at the MS clinic"

This tends to get the point across that you are confused, a bit scared and desiring to be a true part of the team, if not the team leader, in how best to treat your case. I find this works well - Sort of a fresh start approach if you know what I mean. It also has the added effect of making you seem like you have been treated poorly by others in their profession - and thus they will want to make up for it. Sort of makes you human and not just another number.

Hang in there my friend!!