Hi everyone, this is my MS story...

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Hi everyone, this is my MS story...

Postby Apuman » Mon Dec 21, 2009 7:00 pm

I had my first attack in January, 2009. I had just arrived in Peru for the start of a 4 month trip through South America, when about a week into my trip, the tingly numbness began. It started in my right foot, and worked it's way up that side of my body during the course of 2 weeks, and stated in my other foot soon thereafter. Of course, being in Peru, the doctors didn't really have MS on their radar screens and it took 4 different doctors and about 2 weeks of failed treatments before one finally decided to do MRI testing (it seemed like an eternity then, but I now realize that 2 weeks was a relatively short time to receive a diagnosis.) Not to mention, all this was made more difficult by my very basic Spanish being my only means of communication.

When I finally did understand that the doctor suspected MS from my MRI images, naturally I got on the internet and started researching like crazy. I gathered all kinds of info about disease course, treatments, possible causes, ect. The hardest thing for me at that point was to be so far from friends and family, only being able to use internet and international phone calls to communicate.

After more tests, including a spinal MRI and a spinal tap which confirmed all suspicions, I was told by the doctor that I should return to the US ASAP. Probably, if I would have been thinking strictly about my health, that would have been the wisest choice. However, at the same time, I was faced with the possibility of becoming disabled, and possibly never having the chance to travel and experience all of the amazing things I had come there to experience again. My decision was not only to stay, but in the end I ended up adding 4 more months to my stay in South America. No regrets so far :)

My MS receded, quickly at first, with with the residual symptoms slowly tapering off. Going into my final month of the trip, My symptoms had virtually vanished. It was wonderful being back to the point of where MS was no longer the first thing I would think about upon waking up in the morning. Of course, reality had to come back and bite me, when my second attack hit me about 2 weeks before I was scheduled to return home.

Since that time, I've come to stay with my family in Canada while I weigh the different treatment options that I've come across. One of my first steps was to get a second opinion from a neurologist here. As I expected he would, he confirmed the diagnosis, and recommended that I begin a regiment of Avonex or Copaxone. I was also told that without these treatments, I may very well end up in a wheelchair within 5 years. I had already educated myself on the CRABS and had firmly decided that it was not the path that I wished take, regardless of their ability to change the course of my MS.

The reasons for my decision to stay off of CRABS are too many for me to go into right now, so I'll simply describe some of the other options that hold promise for me.

I am very hopeful about the research being done into the theory of CCVIS, and like many, eagerly await the results of further studies. If the theory holds I greatly look forward to the relief that it could bring myself and my fellow sufferers of MS. I am, however, sharply aware that that day won't be tomorrow, and I will need a strategy to deal with my MS in the meantime.

Admittedly, when it comes to diet, I get very confused between all of the shoulds and shouldn'ts from one source conflicting with all of the shoulds and shouldn'ts from another. Rather, I choose to keep a balanced diet, avoiding foods I know to be generally unhealthy. I am also following a regiment of vitamin supplements recommended by my naturopath, as well as receiving acupuncture to relieve some of the symptoms.

The treatment that I'm very anxious to start is call helminthic therapy. Basically, I would infect myself with a small dose of hookworms, which have been shown to have a regulating effect on overactive immune systems, and dramatic positive effects on MS. The thought of living with these parasites inside of one's self might seem a bit repugnant to some, but if it can maintain the quality of my life, I'm more than willing to give it a try!

I'm very happy to have come across this community, and greatly look forward to swapping ideas with you.
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Re: Hi everyone, this is my MS story...

Postby Lyon » Mon Dec 21, 2009 7:26 pm

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Last edited by Lyon on Mon Nov 21, 2011 9:18 pm, edited 1 time in total.
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Postby Apuman » Mon Dec 21, 2009 7:46 pm

Thanks, Lyon, and yes, I've been in contact with Jasper. Appearantly, he's been having troubles with the FDA and can no longer do business in the US, which makes me all the more happy to be in Canada right now. I'm near Vancouver, BC but I'm very glad you told me about the trials in Madason, I have an aunt there who's recently been experiencing symptoms and had MRI results that suggest MS. Thanks for your post :)
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Postby Lyon » Mon Dec 21, 2009 8:04 pm

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Last edited by Lyon on Mon Nov 21, 2011 9:17 pm, edited 1 time in total.
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Postby AndrewKFletcher » Wed Dec 30, 2009 8:24 am

Did your symptoms vanish at high altitude and return back at sea level?
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Postby Apuman » Wed Dec 30, 2009 12:09 pm

Actually, my first attack happened shortly after I had arrived in high altitude, from sea level. The second was the opposite, starting when I arrived at sea level from high altitude. Then again, I had gone up and down at other points in the trip with no noticeable effect on my symptoms.

When I asked the neuro in Peru if he had any idea why my first attack may have been triggered when it was, he told me that he had 3 years of guessing left before retirement. :?
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