Questions for people that have Multiple Sclerosis?
Let’s start from the beginning. I was diagnosed with MS 5 years ago. I do not take any injections because I don’t believe in being a Guinea Pig & I don’t trust the FDA but I do try & take care of myself such as eating & exercising correctly.
When you exercise do you notice that your symptoms get worse? For instance, I just got in to cycling & it took several weeks before I could fell my legs properly.
Are your symptoms worse in the Hot rather in the cold? 100 degree days for me are a killer it makes most of my body tingle (similar to your feet being asleep).
When were you diagnosed & how have your symptoms got worse?
If anything, what drug are u on & what effect has it had on u?
What has your doctor done to gain your trust?
Is there support groups that will support my decision to not trust the FDA & the guidelines they have given doctors? & no the National MS Society encourages u to be on the drugs whether they seem to help or not. Had a counselor their, been their done that.
Wow, lot’s of questions. Be warned this is long. Good luck in your pursuit.
>When you exercise do you notice that your symptoms get
>worse? For instance, I just got in to cycling & it took
>several weeks before I could fell my legs properly.
>Are your symptoms worse in the Hot rather in the cold?
>100 degree days for me are a killer it makes most of my
>body tingle (similar to your feet being asleep).
You are experiencing what is referred to as a psuedoflair. Heat appears to intensify multiple sclerosis symptoms for about 60% of patients. It can also occur if you are running a high fever and hot showers.
>When were you diagnosed & how have your symptoms got worse?
I was diagnosed last year as a fluke (I was having an MRI for another reason). I had over 30 lesions before I was ever diagnosed. The attacks were just in parts of my brain that didn’t cause noticable symptoms.
But in the last few months I have had 2 moderate attacks but they resolved quickly. In February, I lost the function of my left side. In April, I developed double vision.
The following things I’ve had for many years, now I know why:
–Visual changes: can’t get a precise glasses prescription so everything is just a bit off. At 20:30 most people wouldn’t notice, but I used to have 20:15.
–Speech: problem articulating words. The thing I can trace back the farthest. The thing I hate the most. I worry I don’t sound smart, particularly hard on me if I am teaching at work or speaking to someone professionally who doesn’t know MS is the problem and I can’t think of the right words.
–Going right along with the speech problems, is decreased concentration. Probably the thing my husband gets the least.
–Fatigue, which is very sensitive to hormonal changes…maybe I can talk the GYN into a hysterectomy to improve my MS symptoms
>If anything, what drug are u on & what effect has it had on u?
I’m a nurse with MS. I spent a great deal of time talking with my doctor and reviewing the literature to decide which drug was best. Copaxone is a shot everyday but no flu-like symptoms. Because I have two very active children (2 and 4), along with still working part-time, I chose Copaxone so as not to have flu-symptoms. Copaxone is an expensive drug, but my insurance covers it, so I pay $15/mo. There are days I don’t want to "shoot up", and in all honesty I skip a day about once a month, a small reprieve. But I know I will get through it, even if I don’t get used to it.
I was at an MS symposium in March, as far as any oral meds for MS there are a few, but they are still a few years down the line. There are 3 in Phase II Trials (to evaluate the effectiveness of the drug for a particular disease and to determine common short-term side effects and risks). There are 3 in Phase III Trials (to evaluate the overall benefit-risk relationship of the drug and provide a basis for physician labeling).
>What has your doctor done to gain your trust?
He’s open to communication. He gives me all the info, good and bad, then leaves the decision up to me. Then he supports that decision.
>Is there support groups that will support my decision to not
>trust the FDA & the guidelines they have given doctors? &
>no the National MS Society encourages u to be on the
>drugs whether they seem to help or not. Had a counselor
>their, been their done that.
Here is a link for general MS info: http://www.medicinenet.com/multiple_sclerosis/article.htm
Here is a link on alternative therapy for MS:
http://www.medicinenet.com/multiple_sclerosis/article.htm
And some alternative drug info…
Low dose naltrexone (LDN) just finished a Phase III clinical trial for use in MS last Nov. But articles were already coming out 2 mos. before that saying more clinical trials are still needed for use in MS.
There are several clinical trials at various stages studying antibiotic therapy and MS.
Reports published in 2006/2007 showed initial benefits with Sativex (cannabis). However, reports published in April from the latest trials showed Sativex was no more effective in treating MS pain than a placebo given to half the patients. It has been approved for use in Canada and is still development in Europe and the US.
My mom and aunt both have MS and don’t take any meds. A big incentive for me choosing Copaxone was having 2 preschoolers. I don’t want to have a detrimental flair and not be able to care for them.
I feel bad for you and your opinion. I work with people who were diagnosed before treatments were approved. These people are now unable to walk.
My aunt is unable to have her own opinion about the medicine. Her body (due to certain antibodies in her blood) rejects the injections. As a result, her body has been slowly debilitating over the last 6 years. This was not by her choice.
In my opinion, you should probably do some true research and find out the benefits. Go to a support group and hear what people have to say. Don’t ask random people through the internet. Ask people you can see and touch and feel how much it has affected their lives. You might want to remember that this is an illness that is not fatal. If there is something that will keep you as healthy as humanly possible, shouldn’t you take that opportunity?
I am not some healthy happy go-lucky person that thinks everything is going to be ok. I have my fair share of problems (health problems at that). I just don’t think one should dismiss opportunities to live a full life if they are right there in front of them. Medical advancements allow you to live an almost normal life now. I don’t understand why you wouldn’t want to do just that?
Hello, am a 50 yr old F . I have had MS for many years.I am still active and have almost no disabilities.I thank Betaseron for at least part of that.I have been on Betaseron for more than 8 years and had no new symptoms or exacerbation’s in those 8 years.My latest MRI is GREAT! I believe that taking the disease modifying drugs are our best defense.
I also believe that you are doing the right thing by taking good care of yourself.Exercise is great for us and when you find one you love all the better.
Yes I do have some issues in the summer,I think most of us do.I find that in the summer I have to change my exercise slightly.Keeping my core temp lower makes all the difference in the world.Circuit training or yoga are great do an aerobic station or pose,then a resting station or pose.I take frequent water breaks and do my exercising in the cool of the day.Swimming is also a great choice for keeping your core temp cool.
Good luck with your MS.Only you can make the decision ,but Please at least consider the inject ables.
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