About Bonnie

I am married with two grown children and a wonderful grandson, and a sweet dog. I live in a town of about 1000 people in Saskatchewan, Canada.

My first symptoms appeared about 15 years before I was diagnosed, with double vision, muscle weakness, heat percipated symptoms, I had MS-Related fatigue, and Trigeminal Neuralgia in my right cheek, to name but a few.

In the early 90’s I started to experience more strange, disappearing symptoms. These symptoms were well and active at home but hid themselves from my doctor.

In August 1995 I had been trying to ignore the symptoms that came back full force in June and stayed, I suspected that they indicated that I might have MS. I felt that if I ignored them, then I wouldn’t have MS.

I happened to be at my doctor’s for another matter when she had an intern examined me. The intern noticed me experience trigeminal neuralgia and asked me to describe what had just happened to me. She said that she had taken a course on MS symptoms the day before and that when trigeminal neuralgia shows up for the first time in someone my age it was usually because of MS. She did a full MS examination and referred me to a neurologist.

The neurologist did an MRI, which showed few lesions. So he performed a spinal tap, which was conclusive to MS. When he told me that I had MS he walked into his office, slapped my chart down, perched on the edge of the desk, and said, “You have MS!” pause, “If you don’t have $17,000 a year to spend on medication there isn’t anything I can do for you. Do you have that kind of money?” I numbly answered in the negative. He grabbed my chart and walked out the door as he was saying, “Have a good day.”

My strong faith and my family helped get me through the trauma of the diagnosis and the aftermath.

A new neurologist started me on Copaxone in February of 2002. The next summer heat really bothered me, but some of my symptoms were diminished. I was one of the unfortunate people in whom Copaxone took longer to start working. I feel that some of that was my fault. I had site reactions from the injections so every now and again I would take a two or three day break from injecting Copaxone. In February of 2003 I decided that this was not allowing my body to fully utilize the medication or become used to it. So I started injecting myself every day, faithfully.

Since then there has been vast improvement. I have more energy, less symptoms, and heat doesn’t bother me as much. Life has a new meaning for me, I actually have a life.

Responses

  1. Hi Czes,

    Thank you for your thought provoking comment. Yes, you are correct; I may control my MS with the help of medications. I still control my MS, even if I use medications or not. I have made the decision to use Copaxone and my quality of life has improved. We all have to make our own decisions.

    I am always interest to hear of someone who can control their MS via other means than medicine. What diet plan are you using. Please see my series of posts on different diets for MS.

    Bonnie

  2. Hello Bonnie,

    That’s fine you are reasonably well.

    It seems to me that not you, but drugs you are using are in control of your MS.

    I was diagnosed with MS in 1996. Medications worsened my overall situation significantly, so I stopped ALL drugs immediately.

    I managed to tame my MS natural way – mainly with nutrition.

    I am on a permanent MS remission from 1997.

    As you see, there are different ways to improve health, even after MS was diagnosed.

    All best –

  3. I found the above response to your story a bit strange. To make a sweeping statement that not you but the drugs are in control is very self-righteous. That’s great that this person has done well on a nutritional approach. Although, I wonder if he has had any MRI’s to confirm his empirical experiences. A friend of mine who had been doing extremely well on Copaxone decided that he may not need the daily injections. He discontinued Copaxone and began an organic and extremely well thought out nutritional program (he’s an engineer). Long story short, at his next exam and MRI screening (6 months after the switch) he had his first new lesions in a decade. Needless to say he got back on his meds. As for me, until something better comes along I plan to do my daily injections religiously.

  4. Yes, David, you are correct, the comment is rather sweeping.

    About a year ago I was very sick and did not inject for about two weeks. I definetly noticed a difference after that period of non-injections. I had a major relapse. Never again. If I become that ill again I will have someone do my injections.

    Thank you for your comment.

    Bonnie

  5. Who is to say that this guy, even has MS. After-all, anyone who only pushes non-conventional or non-mainstream ideas, has to know “less”, than we all know….. We need one of the available mainstream medications to keep from worsening.
    MS is silently wreaking havoc on and in our minds.
    Contact me to learn more on my thoughts.

  6. Stuart,

    I am of the same opinion that you are. We absolutely must continue our mainstream medications.

    MS is a visible and an invisible disease. Sometime not even the person with MS realizes what is happening within their own body, until the devastation becomes visible.

    Thank you for your comment.

    Bonnie

  7. Hi Bonnie…thanks for sharing your experiences! My partner was diagnosed with MS in February of this year and we decided on Copaxone because aside from it being a daily injection the other side-effects are seem minimal compared to some of the other treatments out there. He’s tollerated the injections really well. He’s had a couple of episodes since starting copaxone, mostly sensory things like tingling and a little burning. My question is: How long did it take for you to see results from the medication? He’s almost at the 6 month mark and we are anxiously awaiting his follow-up MRI in July. We’re trying not to get too excited as we’ve been told it could take up to a year for Copaxone to actually kick in. So in the meantime we’re trying to get a feel for how long it has taken others to see results! Any feedback you might have would be greatly appreciated!

    Thanks,

    Charlie

  8. Hi Charlie,

    Thank you for your comment,

    With Copaxone I, myself, started noticing dramatic changes around six months. My MRI indicated that there were no new lesions. The most noticeable physical changes were that I wasn’t as fatigued and the heat of the summer did not bother me as much.

    I know that the makers of Copaxone, Teva Pharmaceuticals, say that Copaxone only stops symptoms from getting worse. I, myself, have noticed that many of my symptoms have disappeared, or at least lessened in severity. Several people who I talk to have reported the same experience. But, alas, some are not quite so fortunate.

    Even if the MRI is not positive, it doesn’t mean that your partners MS is not improving. If your partner notices an improvement in symptoms, then the Copaxone is working.

    Bonnie

  9. I have ms the dc has put me on copaxone Ive taken it for to days now I am weak very tired how long did it take you to feel a difference

  10. Bonnie, I am so blessed to find your blog! I actually found it when WordPress linked it to mine for similar content. I wrote an article on MS because my Dad has the illness. Your blog is so informative I must tell my readers to look here for great information. Thank you for sharing your resources to inform and assist others.

  11. I am sorry your first doctor was an insensitve jerk! I cannot beleive he would do that.

    I am experiencing fluxuating pulsing tingling that moves around hand to hand, arm to arm, foot to foot.

    Sometimes I get an electical rush from my shoulder blades to my face. I don’t know if you ever expereinced that warm, tingly goose-bump feeling sensaton when you connect with another person, but that is what I am feeling.

    Comments? Go ahead anyone and send to my email address. Thanks!

  12. Some people only take a few months for Copaxone to work its wonderes. But, for me it took about 6 months. I am sure that the reason it took so long for me is because I skipped injecting myself ever now and again.

    Bonnie

  13. thank you

  14. I HAVE HAD MS FOR 15 YRS. I HAVE HAD 4 RELAPSES. THIS LAST ONE BEING THE WORSE. I WAS IN THE HOSPITAL FOR 5 DAYS TAKING STEROID IV’S EVERY 12 HRS. I HAVE ALWAYS ARGUED MEDS. REBRIF HAVS BEEN RECOMEND BY A NEW DR. LOOKS LIKE SIDE EFFECTS ARE WORSE THAN THE DISEASE ITSELF. I AM TRYING TO DECIDE WHETHER I SHOULD CONTINUE DRUG FREE OR START DRUGS. ANY SUGGESTIONS?

  15. Hi Bonnie,
    I am the Multiple Sclerosis case manager at our facility. One of my pts. came in today with an exacerbation. I wanted to provide him with some information related to steroid use and came across your blog which is very thorough. Thank you for blessing others with this knowledge. Would you mind if I print out some of your information as a resource to give to my patients?

  16. By all means print out whatever you need to. Thank you for asking.

    Bonnie

    I have another blog that I have been posting to for the last three years. It has much more information on it. I am sorry but it has become a chore to attempt to post information to both blogs. Therefore, I have decided to quit posting to this blog and post exclusively to my older blog. The URL for my other blog is:
    http://multiplesclerosis.blogharbor.comPlease enter this new blog into your favourites.
    I usually post anywhere between 2 and 7 times a day to this other blog.

    Bonnie

  17. I have another blog that I have been posting to for the last three years. It has much more information on it. I am sorry but it has become a chore to attempt to post information to both blogs. Therefore, I have decided to quit posting to this blog and post exclusively to my older blog. The URL for my other blog is:
    http://multiplesclerosis.blogharbor.comPlease enter this new blog into your favourites.
    I usually post anywhere between 2 and 7 times a day to this other blog.

    You will find more information under Therapies. Where I have listed all of the current therapies and their side-effects and effacy.

    Bonnie
    Bonnie

  18. Thank you for posting all of this Bonnie. It helps to hear someone else’s tale. I just posted on another blog of yours as well. I have been diagnosed for about a year now and have never been a part of any support groups or anything. I think it would be useful but haven’t had the time. Going to school full time, working full time and having a life unfortunately takes over.

    I was told in a clinical way as well, but I am sorry to hear that’s the way your doctor chose to handle it. That’s just not right! I have been taking Betaseron the entire time (I started about a month or so after being diagnosed). I had flu like symptoms every time I took it (every other day). I would wake up in the middle of the night with a fever and chills. I felt like this until about noon the next day. Since I had just started my new job, I wasn’t able to take any time off work. So of course this made it even more difficult. I was also put on Neurontin at first for my nerve pain, but stopped after a few months. It made me gain weight and made me extremely loopy. I currently do not take anything for my nerve pain, but am thinking I might need to. I am a runner and have a pretty active lifestyle now, so I don’t want anything that will affect this. Does anyone have any suggestions?

  19. Bonnie, new blog not active in Aust. I was on Betaferon (3 years) but due to severe skin reactions (golden staph) my nuro took me off it and said same would happen with any other injections. Now only treating symptoms with steriods. Just finished 5 days. Feel horrible. Mouth ulcers yuck! Feel like I should be on something. Still staggering around. Very depressed.

  20. I don’t feel that you would necessarily get staph with all injectable medications for MS. Could you possible get a second opinion for another neurologist?

  21. Does anyone know about fingolimod? I was hoping to get on the pill as soon as it comes out. I was just diagnosed last month and I am so scared I do not know what to do…

    ron

  22. Hi Bonnie,

    I have Multiple Sclerosis diagnosed in 2007 and also suffer from Psoriasis since 2001.
    I read now your article which remembers me again on my question in my mind. Do we really have Multiple Sclerosis ??

    The thing is, if you have the “celiac disease” you also have lesions like in the case of multiple sclerosis. If you have “Crohn’s disease” or “Ulcerative colitis”, again, you also have such lesions on MRI. These diseases are problems with digestion.

    So if they find lesions, like in my or in your case, and they measure the inflammation parameters… What is the guarantee, that I don’t suffer “celiac disease” or Crohn’s disease” or “Ulcerative colitis” ??

    If the don’t really know what’s the problem, what cause multiple sclerosis, every medical statement can be a medical mistake !!
    So maybe, we have “celiac disease”, which would be, if we don’t eat grains, easy to solve.

    My opinion is, we have to check our digestive system and bowel. And if you ask me, my “mystic problem” started with Psoriasis, over the years, the damage in my bowel is so strong, that now it reached my central nerv system. Leaky Gut Syndrom…

  23. I’m impressed, I need to say. Really hardly ever do I encounter a blog that’s both educative and entertaining, and let me tell you, you could have hit the nail on the head. Your concept is excellent; the problem is something that not sufficient persons are talking intelligently about. I am very completely happy that I stumbled throughout this in my search for one thing regarding this.

  24. Spot on with this write-up, I truly think this web site needs far more consideration. I’ll in all probability be once more to read much more, thanks for that info.

  25. very nice put up, i actually love this website, keep on it

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  27. Great read! I want you to follow up on this topic =D

    Warm Regards
    Kaitlin

  28. Aw, this was a really nice post. In idea I would like to put in writing like this additionally – taking time and precise effort to make a very good article… but what can I say… I procrastinate alot and by no means seem to get one thing done.

  29. Possibly the BEST topic that I have read today??

    Federico

  30. Hi,
    Thanks for sharing your stories. This is really helpful considering I was newly diagnosed with MS within the last month. I have been trying to to find out if anyone experineces an on going numbness, tingling and pain in their hands due to the MS. I was presecribed Gabapentin and I will be starting my Rebif shots sometime in the next week.

  31. Hi, I am pleased that my blog has helped you. Yes, several people experience on going numbness, tingling, and pain in their hands due to MS. Give Rebif long enough to work before you decide that it may or may not be for you. There are several injectable medications and they all work slightly differently. If one doesn’t work another will. rebif is very good and in all likelyhood will be excellent for you. It may take as much as to or three months for you notice a real difference. Keep in close touch with your doctor. Gabapentin is a great drug and will help you quite a bit. It helps pain quite well. I have noticed that I have to take the bulk of my Gabapentin in the evening because it makes me too tired.

    Good luck, email again.

    Bonnie

  32. I have had all the symptoms and have been plugging along by blaming ‘lifestyle’…its so clear now my GP was correct. I was admitted to ED Neurology on a Fri arvo – all consultants had gone home and discharged myself te following Sunday morning because I couldn’t stand the patients around me. Nearly a year to the day the symptoms have returned and I am frightened. I know this sounds like me, me and me but I reckon I should get the situation addressed now. Thanks.

  33. I so appreciate you sharing your experiences. I have been fighting MS over 20 years. Thank you again beyond words. Many blessings and smiles.

  34. I have been trying to decide if I should stay on Copaxone…..your blog has given me more food for thought. MS…such a mystery in so many ways.

    Thanks for this place to chat and learn from others.

    Becky

  35. Hi Becky,

    Why are you debating staying on Copaxone? Which other drug are you considering?

    I would like to help you.

    Bonnie

  36. I’m glad that my blog has helped you.

  37. I’m glad that my story about my self has helped you.

  38. Superb post however , I was wanting to know if you could write a litte more on this subject? I’d be very grateful if you could elaborate a little bit more. Thank you!`

    What post are you talking about? What would you like more information on?


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