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Hey,

So this started out innocent enough when I was 23. It August 2010 my right eye was bothering me and I couldn't see bright light. I told my mom and she didn't quite understand. A day or two later I was with her and my brothers at the beach at night and I told he I couldn't see the moon in my right eye. Well I went to the ER, they sent to an eye specialist and he told me I have MS. I thought he was full of it.

Then I started having weird muscle pains and balance problems. This went on for about 2 years. I was a lot of Doctors. Everyone told me the same thing, but no one was willing to put it on paper or order an MRI so I couldn't get treatment. One day I was so dizzy while asleep I threw up every time I rolled over. Again the hospital, again a Doctor who didn't care. It was a teaching hospital and luckily my mom came with me and argued with the guy in charge and finally agreed to order an MRi cause he thought I was making it up (that I had MS) and wanted to prove it to me. Come the day of the MRI, the technician taking it looked at it and told me make an appointment with the hospitals Neurology department and told me a bunch of lesions she could see, but she wasn't a Doctor she couldn't tell me what is was, but that they would tell me its MS. She was the first one in almost 2 years of crap who was doing what she could to help me.

I had to go back to Colorado for a while and it flared up during a flair up. I got to the point where I couldn't move and I was paralyzed in my arms and legs. I went the hospital for the third time in a 2 weeks and they admitted me and transferred me to a different hospital. I was in the hospital for close to a month. The first week I was on Steroids, 1 gram a day, then into physical therapy.

The hospital had a neurologist. The first conversation we had, he told me I would never walk again. Then went on for 10 minutes about why I would never walk again. This was a stupid as it was depressing at the time. I was relearning how to walk when he told me that.

After I left the hospital I was on Rebif, which made me so sick and made me worse. After a week or two of it, I couldn't sit up. I stopped taking and started getting better. About 2 months later I could walk again without problem. I looked totally normal and no one had any idea I had ever been sick or in a wheelchair at all

But about 2 months ago I got a lung infection with 105 degree fever It caused new flair up. I went back to the Neurologist and told and that I needed steroids. He said no. Said I wasn't sick enough and they only work 3 times in a lifetime. I got an appointment with a new Doctor but while waiting I have gotten worse and using the wheelchair because my balance is so bad I am afraid to walk.

I just saw the new Neurologist. He was shocked about the other Doctor and when he heard about my spine MRI, he ordered the Doctors report for it and then immediatelyordered the test for NMO. I haven't got the results back yet, but either way I think his guy is more competent and he wants he to do better. So I feel a lot better about everything

hi em, welcome to the forum

The neurologist probably wouldn't give you steroids because you were misdiagnosed initially. His conscience probably got to him. Are you familiar with Lyme, Bartonella and Babesia? You likely have those infections, educate yourself about the controversy of chronic lyme and co-infections. The lung infection you got was probably when the neurologist realized it and would not give you the steroids knowing that it will make you worse. These infections mimic MS and are very difficult to treat and take using long term treatment with combinations of antibiotics. These infections cause lesions in the brain visible on an mri too.

bartman wrote:The neurologist probably wouldn't give you steroids because you were misdiagnosed initially. His conscience probably got to him. Are you familiar with Lyme, Bartonella and Babesia? You likely have those infections, educate yourself about the controversy of chronic lyme and co-infections. The lung infection you got was probably when the neurologist realized it and would not give you the steroids knowing that it will make you worse. These infections mimic MS and are very difficult to treat and take using long term treatment with combinations of antibiotics. These infections cause lesions in the brain visible on an mri too.

I didn't know any of that, thanks! Lyme is the one that comes from ticks?

I may not have said it right, but its a new Doc that is having the NMO test done. The first guy did MRI only and refused to do anything beyond that. When I told him about the lung thing, he said that there is a flu going around and a lot of people are getting it.

It's shocking that they have not done a lyme test at all yet or have they? But it does not matter, the tests are inaccurate and unreliable, which means you must treat. You need to find a LLMD, which stands for lyme literate doctor and they will help you. Please please please educate yourself on these infections. go to ilads.org to llearn more, read dr. burrascano's guidelines and go to http://tbdalliance.org/ to find a lyme doctor under the treatment section.