Hi! Currently in the loooong diagnosis process....ish...
Posted: Sun Jul 31, 2011 12:49 am
Hi,
My name is chelsea. Im 22 years old and living in the northwest. I am currently in the PAINFULLY(all pun intended) slow process of trying to figure out whats going on with my body.
Hopefully this wont be too long...nor too boring/annoying. Just needed a place to talk to people who are or have gone through the same/similar process and get some advice and information.
Since early high school Ive suffered from chronic headaches and severe back problems. The headaches vary in severity and were/are for the most part easy to ignore.
The back problems have always been a bit more of an issue. The pain has always been in the thoracic and cervical spine areas (upper back and neck). For years I just thought it was just myofacial syndrome problem....severe chronic muscle knots. My back is always VERY tight and painful. Hurts to move my scapula (shoulder blades). Putting my chin to my chest causes severe shooting pain down my spine and is near impossible to do at this point.
The only other problem I experienced during high school was the falling. In the 4 years of high school I fell only 3...maybe 4...times. Sometimes I could attribute it to being a klutz but at least 2 of the falls were completely out of the blue. One specific time my legs just gave out from under me entirely. I was walking, took another step and the leg just gave. Ended up on the ground with scraped knees and hands and a twisted ankle. I didnt trip and it was even obvious to my mother who watched it happen.
To all of this I dismissed and ignored for years. During junior or senior year I had a two week span where I suffered from EXTREME fatigue. Had a hard time getting out of bed. Walking to the bathroom or down the stairs was a chore.
Went to the doctor....they thought it was my heart or lungs....sent me to a specialist. Nothing.
Well....Back in January/February of this year my back started getting MUCH worse. Im working full time nights at a hotel folding blankets and towels and I was preparing to go into a 6 month intensive course to be state certified to be a personal trainer. At this point I had been a gym rat for over a year and was working out regularly. Working on physical therapy for my back (which WASNT helping) and eating extremely healthy. My back had been getting worse for a few years but it finally reached a point where I begged my parents to send me to a chiropractor. They did....he fixed me up as best as he could but did notice how rigid my muscles were and suggested a massage therapist. I went to the massage therapist who couldnt believe I hadnt been in a severe car accident or something equally as bad because I was so very tight and was spasming.
He worked on me....and it helped a little bit....but not for good. Just for a few days.
None of this helped long term.
School started April 2nd. I was working four days and going to school four days. And getting about 5 hours of sleep during the day between the two. Needless to say I was exhausted and the 2nd week of school I came down with a horrific cold/flu. Was out of school and work for a week. High fever...the works. Week three....I return to both work and class....and about half way through the week...my back started to spasm. Very painfully. Bad enough that it kept me from attending classes.
Over the rest of April things started getting much worse. Severe spasming. Stabbing/electric shock/shooting/aching pains in my back, neck, arms and left leg. My left hip started locking up when walking. Severe headaches and I was very tired ALL the time.
Needless to say I went to my general practitioner to find out WHAT was going on. The first meeting I went right in to get an x-ray to check for spine problems and was given a light painkiller (Advil but stronger) and a light muscle relaxant. Neither worked at all. A week later x-rays came in showing absolutely nothing. Went in to talk to her again....my painkillers were changed to a SLIGHTLY higher dose and I was referred to a Physiatrist.
At this point its about mid May and I wake up one Thursday morning at around 6:30am to the worst pain ive EVER experienced in my neck, my entire right arm, and rib cage. Aching, burning, tingling pain. My arm was tingling and went completely numb by 8:30am when my boyfriend drove me to the ER. My chest and back felt like it was trapped in a vice and was being crushed. I was trembling and had the hardest time even spitting out my birthdate when asked by the ER receptionist. By 11:30am my boyfriend is taking me home with a prescription of vicodin and valium....which I was on for a week.
It helped the pain when I was on it.
My appointment with the physiatrist wasnt until June 28th.
Over that month of waiting my symptoms just got worse. My right hand/forearm and left leg became quite numb. The numb leg causing a limp. Constantly exhausted. The nape of my neck felt like it was set on fire one night and continued to feel raw with a non-existent sunburn for weeks. When I would get up in the morning it felt like I was walking on jagged sharp gravel and the pain would radiate up my shins. Pins and needles and electric shocks in my shoulders and arms. And I developed a tremor. My hands shake, making doing small things like putting pens back in their caps hard. My balance was terrible and I constantly had a feeling like I was drunk. When I closed my eyes sometimes I would nearly fall over.
I feel weak, easily worn out, constantly in pain. I had to take an extra day off work and I had to take a leave of absence from school entirely.
When I went into the physiatrist he took a family history (my grandmother died at age 38 of MS), took my reflexes, and did a few strength and coordination tests.
He decided the best thing to do was to send me to the Neurologist.
During the two weeks between doctors appointments my symptoms started to lighten a bit. I wasnt in as much pain, I was able to get more done at work, I was able to get back to yoga but only twice a week, my numbness in my hand and leg started to leave. I was still exhausted, still trembling, still feeling off balanced (although not as much), still experiencing the 'vice grip' pain in my back and chest, the shooting and burning pains in my neck and arms. But I was a bit better.
She asked my symptoms, I told her about my grandmother, she did a few strength and coordination tests (the same as my physiatrist) and then sent me out for blood work (8 different tests checking for B12, Lupus, muscle deterioration, etc) and scheduled an MRI for the 21st of this month.
Meanwhile....my symptoms are much better. But are still preventing me from doing most of the things I was doing with my life prior to all of this.
Went in for the MRI on my brain and cervical spine.
On the 29th (this last Friday) I went back into the Neurologist. Blood tests clean. MRI scan clean.
Nothing found other then a small nodule on my thyroid....which wouldnt cause any of this.
So now Im sitting here.....and have no idea where to go. My neurologist didnt set up any other tests. Didnt refer me to anyone else who might find out whats going on. She quite literally told me to go see my general doctor again.....even though Im still having neurological issues (that are visible even) and have no idea what they are.
This is affecting my whole life and I need to figure out what it is. But I dont have the money to just keep going in a giant circle over and over again like this. Something is obviously wrong....but so far all the doctors Ive seen havent really done much. And when they get pushed into doing something...and it comes up negative....they give up and send me home.
Any suggestions? Comments? Advice? I'd really love even moral support LoL.
Either way I look forward to reading more about MS and hearing from/about people who have dealt with this disease and how they've dealt with the doctors that comes with it.
Wish all of you health and happiness!
Thanks!
My name is chelsea. Im 22 years old and living in the northwest. I am currently in the PAINFULLY(all pun intended) slow process of trying to figure out whats going on with my body.
Hopefully this wont be too long...nor too boring/annoying. Just needed a place to talk to people who are or have gone through the same/similar process and get some advice and information.
Since early high school Ive suffered from chronic headaches and severe back problems. The headaches vary in severity and were/are for the most part easy to ignore.
The back problems have always been a bit more of an issue. The pain has always been in the thoracic and cervical spine areas (upper back and neck). For years I just thought it was just myofacial syndrome problem....severe chronic muscle knots. My back is always VERY tight and painful. Hurts to move my scapula (shoulder blades). Putting my chin to my chest causes severe shooting pain down my spine and is near impossible to do at this point.
The only other problem I experienced during high school was the falling. In the 4 years of high school I fell only 3...maybe 4...times. Sometimes I could attribute it to being a klutz but at least 2 of the falls were completely out of the blue. One specific time my legs just gave out from under me entirely. I was walking, took another step and the leg just gave. Ended up on the ground with scraped knees and hands and a twisted ankle. I didnt trip and it was even obvious to my mother who watched it happen.
To all of this I dismissed and ignored for years. During junior or senior year I had a two week span where I suffered from EXTREME fatigue. Had a hard time getting out of bed. Walking to the bathroom or down the stairs was a chore.
Went to the doctor....they thought it was my heart or lungs....sent me to a specialist. Nothing.
Well....Back in January/February of this year my back started getting MUCH worse. Im working full time nights at a hotel folding blankets and towels and I was preparing to go into a 6 month intensive course to be state certified to be a personal trainer. At this point I had been a gym rat for over a year and was working out regularly. Working on physical therapy for my back (which WASNT helping) and eating extremely healthy. My back had been getting worse for a few years but it finally reached a point where I begged my parents to send me to a chiropractor. They did....he fixed me up as best as he could but did notice how rigid my muscles were and suggested a massage therapist. I went to the massage therapist who couldnt believe I hadnt been in a severe car accident or something equally as bad because I was so very tight and was spasming.
He worked on me....and it helped a little bit....but not for good. Just for a few days.
None of this helped long term.
School started April 2nd. I was working four days and going to school four days. And getting about 5 hours of sleep during the day between the two. Needless to say I was exhausted and the 2nd week of school I came down with a horrific cold/flu. Was out of school and work for a week. High fever...the works. Week three....I return to both work and class....and about half way through the week...my back started to spasm. Very painfully. Bad enough that it kept me from attending classes.
Over the rest of April things started getting much worse. Severe spasming. Stabbing/electric shock/shooting/aching pains in my back, neck, arms and left leg. My left hip started locking up when walking. Severe headaches and I was very tired ALL the time.
Needless to say I went to my general practitioner to find out WHAT was going on. The first meeting I went right in to get an x-ray to check for spine problems and was given a light painkiller (Advil but stronger) and a light muscle relaxant. Neither worked at all. A week later x-rays came in showing absolutely nothing. Went in to talk to her again....my painkillers were changed to a SLIGHTLY higher dose and I was referred to a Physiatrist.
At this point its about mid May and I wake up one Thursday morning at around 6:30am to the worst pain ive EVER experienced in my neck, my entire right arm, and rib cage. Aching, burning, tingling pain. My arm was tingling and went completely numb by 8:30am when my boyfriend drove me to the ER. My chest and back felt like it was trapped in a vice and was being crushed. I was trembling and had the hardest time even spitting out my birthdate when asked by the ER receptionist. By 11:30am my boyfriend is taking me home with a prescription of vicodin and valium....which I was on for a week.
It helped the pain when I was on it.
My appointment with the physiatrist wasnt until June 28th.
Over that month of waiting my symptoms just got worse. My right hand/forearm and left leg became quite numb. The numb leg causing a limp. Constantly exhausted. The nape of my neck felt like it was set on fire one night and continued to feel raw with a non-existent sunburn for weeks. When I would get up in the morning it felt like I was walking on jagged sharp gravel and the pain would radiate up my shins. Pins and needles and electric shocks in my shoulders and arms. And I developed a tremor. My hands shake, making doing small things like putting pens back in their caps hard. My balance was terrible and I constantly had a feeling like I was drunk. When I closed my eyes sometimes I would nearly fall over.
I feel weak, easily worn out, constantly in pain. I had to take an extra day off work and I had to take a leave of absence from school entirely.
When I went into the physiatrist he took a family history (my grandmother died at age 38 of MS), took my reflexes, and did a few strength and coordination tests.
He decided the best thing to do was to send me to the Neurologist.
During the two weeks between doctors appointments my symptoms started to lighten a bit. I wasnt in as much pain, I was able to get more done at work, I was able to get back to yoga but only twice a week, my numbness in my hand and leg started to leave. I was still exhausted, still trembling, still feeling off balanced (although not as much), still experiencing the 'vice grip' pain in my back and chest, the shooting and burning pains in my neck and arms. But I was a bit better.
She asked my symptoms, I told her about my grandmother, she did a few strength and coordination tests (the same as my physiatrist) and then sent me out for blood work (8 different tests checking for B12, Lupus, muscle deterioration, etc) and scheduled an MRI for the 21st of this month.
Meanwhile....my symptoms are much better. But are still preventing me from doing most of the things I was doing with my life prior to all of this.
Went in for the MRI on my brain and cervical spine.
On the 29th (this last Friday) I went back into the Neurologist. Blood tests clean. MRI scan clean.
Nothing found other then a small nodule on my thyroid....which wouldnt cause any of this.
So now Im sitting here.....and have no idea where to go. My neurologist didnt set up any other tests. Didnt refer me to anyone else who might find out whats going on. She quite literally told me to go see my general doctor again.....even though Im still having neurological issues (that are visible even) and have no idea what they are.
This is affecting my whole life and I need to figure out what it is. But I dont have the money to just keep going in a giant circle over and over again like this. Something is obviously wrong....but so far all the doctors Ive seen havent really done much. And when they get pushed into doing something...and it comes up negative....they give up and send me home.
Any suggestions? Comments? Advice? I'd really love even moral support LoL.
Either way I look forward to reading more about MS and hearing from/about people who have dealt with this disease and how they've dealt with the doctors that comes with it.
Wish all of you health and happiness!
Thanks!