Hello. My name is Tricia and I have been on a medical goose chase for the last year, though really longer than that when I think about it.
Fifteen years ago I got an extremely bad case of mono and have never been right since. Over the years I have been diagnosed with Chronic Fatigue Syndome, Interstitial Cystitis, Orthostatic Intolerance, Candiasis, and Irritable Bowel Syndrome. So I've dealt with extreme exhaustian, dizziness, and bladder problems off and on for several years now.
But in the past year, I've been developing new problems that seem to have the doctors stumped. First off, I started getting numb hands and feet and a tingling sensation. I have a history of low blood pressure, so they put me through a multitude of cardiological tests. Everything came back fine and they concluded that my low blood pressure is normal for me and does not get any worse when I have symptoms. Strike one.
Then I started having a weird burning sensation. It feels like someone has rubbed me down with Icy Hot. It's like a chemical burn, not a sunburn and it's very annoying. This time they did all kinds of blood work to check for Lupus and other disorders. No problems there other than excessively high Epstein Barr counts which they say means nothing. Strike 2.
My complete symptom list now includes extreme fatigue, eye pain/strain, dizziness that often causes me to fall, weak legs (when I have a "flare up", I require assistance to walk), numb hands and feet, a tingling sensation, a burning sensation, twitching extremities, hand tremors, and many more I'm probably not thinking of at the moment. I've discovered that stress, heat, and not getting enough sleep definitely affect me and make things worse.
I started doing my own research and think that MS may be my problem so I nagged my doctors until they got me a referral a neurologist. That was back in October and I finally get to see someone this coming Wednesday. I am both hopeful and scared at the same time. I do not want this to be Strike 3. I NEED a diagnosis. I need to know that I am not just crazy. Each time this hits, it hits worse and leaves me more disabled. Then things settle down and I go back to a new level of "normal". I learn to cope with that and then, BOOM!, it hits again.
I have felt so hopeless and utterly alone. I live in a small town and have not felt much support at all. I feel like everyone thinks I'm making this up for attention or something. It's very frustrating. So once I found this forum, I just began to read and cry. I can't tell you what a relief it is to find other people like me. People who share my same frustrations and who "get" what this past year has been like for me. So thank you for that! I really appreciate it!
Fifteen years ago I got an extremely bad case of mono and have never been right since. Over the years I have been diagnosed with Chronic Fatigue Syndome, Interstitial Cystitis, Orthostatic Intolerance, Candiasis, and Irritable Bowel Syndrome. So I've dealt with extreme exhaustian, dizziness, and bladder problems off and on for several years now.
But in the past year, I've been developing new problems that seem to have the doctors stumped. First off, I started getting numb hands and feet and a tingling sensation. I have a history of low blood pressure, so they put me through a multitude of cardiological tests. Everything came back fine and they concluded that my low blood pressure is normal for me and does not get any worse when I have symptoms. Strike one.
Then I started having a weird burning sensation. It feels like someone has rubbed me down with Icy Hot. It's like a chemical burn, not a sunburn and it's very annoying. This time they did all kinds of blood work to check for Lupus and other disorders. No problems there other than excessively high Epstein Barr counts which they say means nothing. Strike 2.
My complete symptom list now includes extreme fatigue, eye pain/strain, dizziness that often causes me to fall, weak legs (when I have a "flare up", I require assistance to walk), numb hands and feet, a tingling sensation, a burning sensation, twitching extremities, hand tremors, and many more I'm probably not thinking of at the moment. I've discovered that stress, heat, and not getting enough sleep definitely affect me and make things worse.
I started doing my own research and think that MS may be my problem so I nagged my doctors until they got me a referral a neurologist. That was back in October and I finally get to see someone this coming Wednesday. I am both hopeful and scared at the same time. I do not want this to be Strike 3. I NEED a diagnosis. I need to know that I am not just crazy. Each time this hits, it hits worse and leaves me more disabled. Then things settle down and I go back to a new level of "normal". I learn to cope with that and then, BOOM!, it hits again.
I have felt so hopeless and utterly alone. I live in a small town and have not felt much support at all. I feel like everyone thinks I'm making this up for attention or something. It's very frustrating. So once I found this forum, I just began to read and cry. I can't tell you what a relief it is to find other people like me. People who share my same frustrations and who "get" what this past year has been like for me. So thank you for that! I really appreciate it!
His nurse made a copy and they kept it in my file.
Comment