Hi! I am a 28 years old woman in Sweden. I have no diagnosis and probably I do not have MS, but am looking for answers.
My body is big mess. It started 7 years ago with weird breathing problems. Lungs are fine, but I am short of breath, have diaphragm dysfunction, air hunger etc 24/7. I went from doing meditation and yoga every day, to not being able to breath normally. The symptoms go up and down, but do never go away. When it's worse I almost can't sleep, eat etc and have to spend most of my time standing. Feels like I have a balloon inside my and the diaphragm moves very weird. I also have like an extreme tight band around the chest and around the abdomen. I have no anxiety or mental problems. All of the abdominal muscles are involved nowadays. My family doctor wants me to do an emg of the diaphragm, but the neuro clinic says they can't do it...no idea why. Maybe I'll have a fluoroscopy/sniff test instead.
Maybe 4 years ago I got numbness in my face. It lasted for a week and then it got better, but after that everything became a big hell. A year earlier I woke up one day and couldn't pee, but it only lasted for some hours.
Some symptoms are here all of the time, some of them flare up. Sometimes they go away again, sometimes they just decrease and sometimes I get something new to deal with everyday.
My symptoms today are constant weird feelings in the face, like paresthesia, numbness and tingling, pain, painful spasms etc. Sometimes it's really hard to deal with....I just want to put my head somewhere else be alone..
I always have tingling in hands and feet. Very weird feeling in my fingertips. I get flares with widespread numbness. Last week it started in a leg and spread to one side of the abdomen, genitals, arm, neck, face etc and then the bladder got numb and and the gut became paralyzed (I am used to extreme gut motitly problems, but not like this..). It lasted for 5 days and started to get better. I have lower degrees of this this all of the time though. I get numb in my legs when I walk and also stiff. I also get more numb in face whe In use the muscles, eat etc.
I have blurry vision, eye pain etc. I have had severe gut problems for a long time and they call it enteric dysmotility. I get spasms and extreme tightness in muscles. Fatigue, of course.
I have cogwheel rigidity, dizziness, head pressure, weakness, swallowing problems and sometimes I can almost not speak because of weakness.
The problem is that my MRI:s are fine. And I had one with contrast 1,5 year ago. I guess, because my symptoms started many years ago....something should have shown up on the mri:s now after all these years if I had MS?
It's just so hard to suffer from all this without having a name for it. I have Ehlers Danlos syndrome, but it doesn't explain all this.... I have no deficiencies (b12, d-vitamin etc), infections etc that can explain the symptoms.
Thank you.
My body is big mess. It started 7 years ago with weird breathing problems. Lungs are fine, but I am short of breath, have diaphragm dysfunction, air hunger etc 24/7. I went from doing meditation and yoga every day, to not being able to breath normally. The symptoms go up and down, but do never go away. When it's worse I almost can't sleep, eat etc and have to spend most of my time standing. Feels like I have a balloon inside my and the diaphragm moves very weird. I also have like an extreme tight band around the chest and around the abdomen. I have no anxiety or mental problems. All of the abdominal muscles are involved nowadays. My family doctor wants me to do an emg of the diaphragm, but the neuro clinic says they can't do it...no idea why. Maybe I'll have a fluoroscopy/sniff test instead.
Maybe 4 years ago I got numbness in my face. It lasted for a week and then it got better, but after that everything became a big hell. A year earlier I woke up one day and couldn't pee, but it only lasted for some hours.
Some symptoms are here all of the time, some of them flare up. Sometimes they go away again, sometimes they just decrease and sometimes I get something new to deal with everyday.
My symptoms today are constant weird feelings in the face, like paresthesia, numbness and tingling, pain, painful spasms etc. Sometimes it's really hard to deal with....I just want to put my head somewhere else be alone..
I always have tingling in hands and feet. Very weird feeling in my fingertips. I get flares with widespread numbness. Last week it started in a leg and spread to one side of the abdomen, genitals, arm, neck, face etc and then the bladder got numb and and the gut became paralyzed (I am used to extreme gut motitly problems, but not like this..). It lasted for 5 days and started to get better. I have lower degrees of this this all of the time though. I get numb in my legs when I walk and also stiff. I also get more numb in face whe In use the muscles, eat etc.
I have blurry vision, eye pain etc. I have had severe gut problems for a long time and they call it enteric dysmotility. I get spasms and extreme tightness in muscles. Fatigue, of course.
I have cogwheel rigidity, dizziness, head pressure, weakness, swallowing problems and sometimes I can almost not speak because of weakness.
The problem is that my MRI:s are fine. And I had one with contrast 1,5 year ago. I guess, because my symptoms started many years ago....something should have shown up on the mri:s now after all these years if I had MS?
It's just so hard to suffer from all this without having a name for it. I have Ehlers Danlos syndrome, but it doesn't explain all this.... I have no deficiencies (b12, d-vitamin etc), infections etc that can explain the symptoms.
Thank you.
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