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newbie

Posted: Mon Jul 09, 2012 12:35 pm
by lcrigsby4
Hello Everyone,

I wanted to introduce myself. I am a 34 year old male that was recently diagnosed with MS after many years of fighting a silent battle. I have always had a hard time opening up and/or downplaying what is going on.

I have over 9 years battled with just issues that I have had a hard time explaining such as a terrible fog in my head some days that makes me feel very dizzy (I always wrote it off as sinus trouble) , and my vision gets very blurry and things seems to have a gray tint to them. My right leg is very tight and burns very bad where I can barely sit on it some days. I would get these weird headaches that felt like an electric shock going down the left side of my head to my upper back, and I get severe back pain and the list seems to go on and on and has gotten bigger and longer with age.

About 9 years ago I had terrible fatigue, and I went to the doctor who tested my hormones. They put me on testosterone, and it has not helped in 9 years and have not been able to tell me why my levels were low after 9 years of testing. My father is a doctor, and I had felt embarrassed to talk to him etc.. I finally did about 3 years ago, but I did not tell him everything going on. He told me to go to a Neurologist, who never looked at my MRI or completed a physical examination. Instead she asked to see my phone, so she could call my wife. She asked my wife if I snored. My wife said sometimes, and the doctor said she thinks I had sleep apnea and left. I was like WTF…..

A year later in the summer, I had bad issues and went to another Neurologist who did another MRI and LP. Both came back negative, and he said there is no need to diagnosis MS because it was just a label on paper until I was basically disable. He said he would treat me like he was currently treating me by just testosterone, but I never really told him the severity of my symptoms. I kind of feel like I am my worst enemy, because I do not want to feel like I am complaining or bothering people.

This year we went to my family reunion in June which was very hot. I got home and was not feeling well. I was feeling week and just down. I went to the gym with my oldest son, because this usually helps my spirits. I did a set of arm curls, and I went to grab the cable pull down which did not happen. I could not lift my arm. I thought maybe I lifted more than I thought or something. I tried to get on the treadmill for a slow jog, and I had to hit the emergency stop after 30 seconds. My legs felt so heavy and week. the next day I went to work, which seemed to be one of the worse days of my life, since then until now, I can barely stand up.

It had gotten so bad; my kids noticed from the tremors and legs going crazy when I try to stand. I went to my GP and let everything out. He looked at my MRI and apologized for not seeing it earlier, and he sent me to a new Nero who sat with my wife and I and diagnosis MS. It may sound sick, but I think my wife and I were both relived, because we know what we are dealing with. They are going to start me on Copaxone, and I am waiting on the nurse to come show me how to use it.

I just hope what is going on with me now physically will go away or lessen. I just need to find away to be more open to people about what is going on with me in my life instead of trying to hide what is happening.

Sorry for the long story

Re: newbie

Posted: Mon Jul 09, 2012 4:36 pm
by lyndacarol
Welcome to our community,lcrigsby4; we invite you to open up, ask questions, even rant if necessary. In general, we are a friendly group and share information and our unique ideas – please join in.

You seem to have a good relationship now with your GP; you need a physician who enjoys being a "detective" and who will work with you. Many people here, like you, have gone through a long process before arriving at diagnosis – they have expressed the same feeling of relief when finally diagnosed.

Some of us have found it helpful to keep a diary or list of symptoms as they appear (and they do change!). This habit may work for you too – it is easier to hand the doctor a list of changes at your appointment rather than take time to enumerate them.

I think that diet is tremendously important; I encourage you to keep a food journal, too – please check out the Diet forum here; and even the story of Dr. Terry Wahls and her dramatic improvement (http://www.TerryWahls.com)