This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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What Treatments Have You Tried?

I have a question for all of you....what MS treatments have you tried and what were your experiences? Now, I know that we all respond different, what works for you may not work for me. In fact the traditional MS meds have not worked for me. When first being diagnosed I did Copaxone. I did not have any real side-effects (the worst of it was site reactions) but it did not really seem to do anything for me. At first I did not get any worse, so maybe that was working, but I did not get any better either. After my first exasperation since the diagnosis, then it did nothing for me. I just progressed and was eventually taken off of it. Then I was put on Avonex which I really did not respond well to. Although I know of people who have done well on the interferons, this was not the case for me. Not only did I experience probably every possible side-effect known for this medication I had 4 exasperations in less than a year while on it. Not to mention I progressed more while on this medication then any other time, to the extent that sometimes I think this particular medication made me more sick than had I taken nothing and just let the MS run its course.


For the last two years I have been taking Mitoxantrone (also known as Novantrone). This medication has been the best thing for my MS. It is only taken once every three months (which is super convenient) and although I had to get blood work and an echo on a regular basis (to monitor any possible side-effects) it gave me my life back. I did better on this medication than any other and for the first time since my diagnosis felt hopeful about my MS. It not only slowed the progression of my MS, but I actually felt better. After two years though I am about at the point where I am not going to be able to take it much longer. I actually think if they allow me to take my scheduled dose on Tuesday, it will be my last one. I have had a total of 10 and you are not allowed more than 12 in your life. Plus, my latest echo shows my ejection fraction dropped from 54% to 45%. Normal is 55-65%. From what I have been told, 45-50% is not anything too scary, but it is a sign of some heart damage, which is the big side-effect with this med (which is why you can't have more than 12).


So, here are my options.......I have been told that I can go back on Copaxone. This is a daily injection (as I am sure most of you know), the side-effects are limited and I can do it at home. The down fall is that I am not sure if it will work since it didn't really work for me before. I am currently having problems with my MS (although still better than before starting the smurf blood) and I am not sure I want to go backwards. I am no longer able to do an interferon and I don't want to. That was just hell for me and considering how it effected my liver, I won't ever have to. I am unable to take Tysabri due to my past history of cancer. The risk for recurrence is just too high, not to mention the very scary idea of PML.


So, what are my options? Well, I have been told I have 3. They are all types of chemo's and they have their own side-effects. The first option (which I am leaning towards) is Cytoxan. It is not a common medication for MS. It was more common before Mitoxantrone came out for MS. This medication has similar side-effects in the respect that it can lower your blood count and immune system, therefore creating a higher possibility of infection. It does not have the risk of cardiac problems however and has been used to treat Lymphoma, which is the most recent type of cancer I had. The advantage would be not only that it can be used for several years in MS (assuming your blood counts don't drop too low) but that my oncologist believes it would help prevent a recurrence of my Lymphoma. The reality is that I may never have a recurrence and so that may not be an issue, but no one really knows one way or the other until it happens. Plus, I have known people who have done the Cytoxan (Lenita for example did it for 4 years) and it gave her her life back. This one is taken once a month, which is not too bad.


Then there is Rituxan. I think I want to stay away from this one. From what I have learned, this one is taken in a couple of ways. For MS typically it is taken in two doses, the second dose being aprox. 3 weeks after the first and then nothing for a while. Problem for me is that there is a risk of PML (like Tysabri) and a risk of pulmonary fibrosis. Considering my current breathing issues I am thinking this would be a last resort med for me.


Last but not least, I have been told I can take Methotrexate. I am familiar with this medication, kind of. I know of people with Rheumatoid Arthritis who takes this and has benefited from it. This one I have mixed feelings with. On one hand it has been shown to help with both MS and severe cases of Asthma. However it is taken once a week, can make you very sick (nausea, vomiting) and there is a risk of pulmonary damage as well as hepatitis. Considering my liver is already damaged from the first chemo I was on 7 years ago, I am not so sure. Plus, even though it has shown to help the inflammation in the lungs with severe asthma, the fact that it can cause other lung problems....not sure that is worth the risk.


So, I am asking all of you. Have you been on any of these meds (especially the 3 chemos)? I am very curious as to how you responded and what your thoughts are. Having said that I am very aware that everyone with MS responds differently to the different meds and just because something worked/did not work for you does not mean that it will/won't for me. I would just like to have as much information about these meds as I can get. So, please comment, email me, or contact me directly (if you know my number and are able). I would appreciate it. :)

A Hospital Stay, Trip to Seattle, and More.....

Fall is finally here. For the most part this tends to be my favorite time of year. In all actuality my favorite time is from October to New Years. I personally am a big fan of the holidays. This time of year typically is great though. The weather is finally cooling off, only it is not yet at the point where it is cold. I can still wear shorts and t-shirts if I wish, but if I want to wear pants I won't get so overheated. I don't need the cooling vest anymore. This is the time of year where I am comfortable. Although I have to admit, I still have a need for my A/C. That is where we are all different, I suppose. I know some of you must be thinking I am nuts for needing my A/C this time of year, but my particular MS makes it so that I actually use the one in my room year round. Yes, even in the winter I will use it from time to time. And, if you know me well, you know I am the type of person that gets so overheated from time to time that I have been known to break a sweat even in 32` weather when everyone else is wearing sweaters, sweatshirts, long pants, and coats. It is quite unusual for me to ever wear a coat. This illness is so strange!

Anyway, so it has been awhile since I have posted. Things are still very up and down in regards to my health. In fact I am having an issue that I am not quite sure what to do about. Of course I am seeing my doctors regularly, but we are not quite sure if my current issues are due to my asthma, allergies, MS or possibly a combination of them all. About 3 weeks ago I had another one of what I have come to call my breathing episodes. About 5 in the morning I woke up because I could not breathe. It came on suddenly and as always my first reaction was to put on the nebulizer and start the meds. It did not take long at all (maybe 30 seconds) to know I was going down hill very fast though and we had to call the EMT. After being rushed to the hospital by ambulance, having several meds pumped in to me, I was then admitted to the ICU where I spent just under a week. As if that was not stressful enough for my family, I was placed in the room next to my grandma who recently spent about 3 weeks in the hospital.

Over the last year I have started having these breathing episodes, and so far there is nothing that is obviously causing it. It has happened in all kinds of different situations....sometimes when awake, sometimes when sleeping, different times of the day and year. Nothing to give us any real idea as to why this is happening or what is causing it. My local doc seems to think that maybe there is something in my home I am allergic to that I could be responding to. However, this last one, I got a cough the day before it happened and we were out of town for a couple days. Then there is the thought that maybe my MS is involved because there seems to be a pattern of severe muscle spasms at the same time. Then there is the thought that it is a combination of me reacting to something in the air which then aggravates my MS causing my MS to flare. At this point I am not really sure. The thing is each one seems to be worse then the previous one and I am just not sure how much my body can take.

Last week I travelled to Seattle to see an Asthma, Allergy, and Immunology specialist. For the first time I was questioned about my vocal abilities and throat. She thinks that possibly I am having a problem that is apparently quite common in people with severe asthma where the vocal cords collapse suddenly. This would make sense to me considering she described it as something common with severe asthma (which I have), the feeling of not being able to breathe because you actually can't due to the vocal cords closing, and considering I have been having a new problem over the last month where I tend to choke or swallow wrong. All of this seems like it would be connected. She is having me return to Seattle to see one of her colleagues who can then do a test to verify the problem and then go from there. She also informed me of things I can do at home to prevent having a reaction to everyday things. Like a specialized mattress pad and pillow cases that prevent things like dust mites, then there are the more expensive things (which no matter the cost sound like a good investment) like de-humidifiers to help reduce any possibility of mold and mildew. She seems to really know her stuff. She also started me on a new nasal spray and is having me do some other things.

Our bodies are quite amazing when you think of it. It sucks that they don't always work the way they were made to, but I am glad that when things like these breathing episodes do happen it is a natural response that I have a spasm which when sleeping wakes me up. Health issues suck!

Well, I hope this finds all of you doing well and enjoying some cooler weather. Take care!


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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