Diagnosed today

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Diagnosed today

Postby Giancarlo » Wed Apr 02, 2014 8:01 pm

Hi all,

As per the subject title, I was diagnosed with MS today and have joined the board in order to read others stories, share stories, and enlighten myself on MS and the treatments available.

In 2009, I had woken up one morning and felt that I was going blind. My vision was blurry in both eyes. If I was to use my peripheral vision, or to turn my head to the left, my right eye would lag for several seconds before it followed my other eye. This would also occur with my left eye if I was to turn my head to the right. I had visited an optometrist who advised that I had 6/6/ (20/20) vision and recommended that I go to hospital for a further check up. An MRI, spinal tap and evoked potentials test later, the Neurologist advised that he couldn't see any symptoms of MS and advised that I was free to go and report back to the hospital if I had another relapse. In 2003, I had Testicular Cancer and I'll never forget receiving a phone call from my Neurologist (Whilst I was at the Cinemas) in 2009 (after the MRI / spinal tap results were in) to advise me that they'd found 'a mass' in my brain and wanted to see me urgently. Understandable, I had thought the worst and assumed that Cancer had returned. It wasn't until I got into the hospital that I was advised that it was inflammation - *phew*

Fast forward 5 years, four weeks ago, I had traveled to New York and Hawaii (from Australia) as a good friend of mine was getting married in Hawaii. My fiance and I decided to spend 5 days in New York before meeting everyone in Hawaii for the wedding. This is where I had proposed to her and where my second episode of blurry vision had begun.

I had put up with it for about 10 nights as I wanted to come back home before being treated. Once again, I had visited an optometrist, was given a referral to see the same neurologist, had an MRI test done and the rest is history. As of only a few hours ago, I have been diagnosed with MS.

When comparing the most recent MRI film with that of 2009, the neurologist didn't see much of a difference in terms of inflammation. There was a single spec on the left side of my brain that hadn't been noted in 2009. My Neurologist believes that this could be what's been causing my (latest symptom) sensory issues for the last 5 days. In short, these last 5 days, the right hand side of my body has started to feel numb / tingling; almost as if it's paralysed. It lasts for about 20 seconds and then goes away. It happens at least 20 times a day and causes a little discomfort, but it's by no means painful.

I'll be back in hospital tomorrow (Friday), Monday and Tuesday as I'll be given Methylprednisolone to assist with the symptoms / inflammation. My Neurologist had briefly talked me through various treatments that I can take after the Methylprednisolone (it feels awkward abbreviating that word to 'meth') and has left me with a lot of literature. He had recommended Gilenya (Fingolimod) but advised me to read up on all treatments to see what I feel will be best suited.

In the last few weeks, I've been playing 'Google Doctor' and had diagnosed myself with MS before the Neurologist did - so I was well prepared for the outcome. I've also been lurking on this forum reading many of stories and it's great to see how big the community is and how helpful forum members are.

*Drops suitcases*

I guess I'll be here for a while and I'm looking forward to reading a whole lot more.
Giancarlo
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Re: Diagnosed today

Postby jimmylegs » Thu Apr 03, 2014 3:55 am

welcome to the site g :) here's some reading on one avenue to consider, if you think any of it might be relevant www.thisisms.com/ftopict-2489.html
what part of oz are you from?
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Re: Diagnosed today

Postby Giancarlo » Thu Apr 03, 2014 2:48 pm

jimmylegs wrote:welcome to the site g :) here's some reading on one avenue to consider, if you think any of it might be relevant http://www.thisisms.com/ftopict-2489.html
what part of oz are you from?


Hi Jimmy. I'm from Sydney.

Thanks for the link! I'll go through it while I'm on the drip this afternoon :)
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Re: Diagnosed today

Postby jimmylegs » Thu Apr 03, 2014 2:58 pm

no probs re the link!

i visited friends in sydney a few yrs ago and they took me to royal national park, the three sisters, the basin, bondi, circular quay, the rocks, and the lindt store :) it was great!
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Re: Diagnosed today

Postby bartman » Fri Apr 04, 2014 4:22 pm

are you aware of the biggest controversy in medicine? Lyme disease + Co-infections (bartonella and babesia). Many many people are misdiagnosed with MS and really have these stealth infections. and recently I have read a lot about this controversy brewing in Australia. Please, please, please look into this and if possible hold those steroids up as they may make you feel temporary better but will ultimately make you feel worse as they suppress your immune system and allow the infections to disseminate. educate yourself about these infections immediately and if possible get on minocycline as it treats ms and also lyme. get back to google and start researching this asap.
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Re: Diagnosed today

Postby Giancarlo » Sun Apr 06, 2014 12:59 am

bartman wrote:are you aware of the biggest controversy in medicine? Lyme disease + Co-infections (bartonella and babesia). Many many people are misdiagnosed with MS and really have these stealth infections. and recently I have read a lot about this controversy brewing in Australia. Please, please, please look into this and if possible hold those steroids up as they may make you feel temporary better but will ultimately make you feel worse as they suppress your immune system and allow the infections to disseminate. educate yourself about these infections immediately and if possible get on minocycline as it treats ms and also lyme. get back to google and start researching this asap.


Thanks for the response bartman.

I hadn't even looked into Lyme Disease 'til I had read your post. I did a quick Google search on 'Ms or Lyme Disease' and was rather intrigued at the abundance of information.

When I had visited my Neurologist last week for the outcome /diagnosis, I wasn't entirely sold on it. His words were 'It's probably MS. Although the inflammation doesn't look much different from the MRI film from 2009, we should probably get you started on some treatment.'

For what it's worth, approximately 10 years ago, I was helping a friend out with some landscaping. Several hours into the day, and within minutes, I was covered with ticks - literally. I had taken my clothes off and my friend could not believe how many were on me (private areas too) considering that he did not have a single tick on him. He phoned his Uncle who we were working for at the time who immediately came to us with some form of spray remedy. I sprayed it all over my body and was able to pick out many of the stubborn ticks that wouldn't fall out. To this day, on my ankles, I have these bumps that are visible under direct light. It's some form of scarring that was left there by the ticks. I hadn't even mentioned this to my Neurologist as I wasn't aware of Lyme Disease when I was diagnosed with MS last week.

I'm going back into hospital tomorrow for my second round of Methylprednisolone. In the interim, I'll read up on 'tests for Lyme Disease' and ask my Neurologist about being tested.

jimmylegs wrote:no probs re the link!

i visited friends in sydney a few yrs ago and they took me to royal national park, the three sisters, the basin, bondi, circular quay, the rocks, and the lindt store :) it was great!


Glad you enjoyed it Jimmy :)
Giancarlo
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Re: Diagnosed today

Postby jimmylegs » Sun Apr 06, 2014 4:29 am

WHOA that sounds nuts. i worked on a bush and dune restoration crew in WA and i think i saw one tick the whole time (and not while working, it was on a weekend down margaret river way). i managed to get chomped by a bull ant, those things are massive!
wonder how you ended up getting picked by so many ticks :S i have one buddy with lyme and he has trouble getting the help he needs from his doc - hope you can get some good support investigating!
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Re: Diagnosed today

Postby bartman » Sun Apr 06, 2014 1:34 pm

If the story your telling me is true than you should seriously consider holding off on the methyprednisone. That is a steroid. If your neurologist is wrong and because the testing is inaccurate for Lyme, especially when you suppress your immune system with steroids you will be harming yourself greatly and making it way more difficult to get well. Lyme disease testing looks for antibodies, suppressing your immune system with steroids makes your body unable to produce antibodies. I think you should do some real good research before you do another round of steroids. I'm glad I could assist you in some way but if you don't understand how you are potentially harming yourself further it won't matter. NOW is the time to question the doctor and stop the steroids!!! At the very least you should be on an antibiotic like minocycline if you do the steroids but be warned of a herxheimer reaction.
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