Hi all. I am 43, new to WA. I have had (self daignosed) tic douloureaux since my 20's. I have also had what I thought was poor circulation most of my adult life and recently discovered it was Raynauds.
I developed numness and tingling in my hands and feet which occurred at random times having nothing to do with circulation nor cold that had me worried. I also had progressively weakening of my right arm along with spasms and electrical "zingers" all over my head.
This brought me to the ER where an MRI was done and I was told I had 2 small lesions deep in the left hemisphere but they could not possibly be causing my symptoms. The ER Dr. said I had radiculopathy and a bulging disc at c5-6. After a week of decadron, my symptoms exploded, occuring on both sides but randomly and intermittently over the past 4 years.
I have lost my balance, fell down stairs 3 times, constantly cough and choke on my own secretions, have off/on blurry and double vision, huge muscle spasms, deep muscle aches, tons of vibrating sensations, creepy crawly feelings, ice cold stabbing pains, poking or being touched when nobody is there, bending of the neck causing vibrating sensations in my sacral area, extreme fatigue, and occasional urinary feelings like I cant go or it just dribbles slowly like an old lady!
I have had about 6 brain MRIs, VEP, EMG, LPs. The only thing that has shown up is the original 2 small lesions. Everything else is negative. I feel like I am going crazy and have since stopped going to the Dr. for every little thing since nobody is diagnosing me with anything and I think they think I am a hypochondriac.
To make matters worse, I am a neurology RN so one Dr actually thinks I have a psyche disorder where I think I have everything I come across! It is so infuriating. I am just documenting everything now so when I finally get bad I can say I TOLD YOU SO!!!
I know something is wrong. I tried to get life insurance the first year this all happened and disability insurance because I thought for sure I had MS. I was denied both soley on the fact of my symptoms and all the tests that had been run. I just want to know what is wrong with me.
For the most part I am very healthy, run triathlons, work out 3-5 days a week, do yoga, and eat right, healthy weight and size, and feel great most of the time. I get bad when I am stressed, which is not much because I am very easy going; maybe a couple of times a year. The worse it gets is so bad I cannot raise my right arm or do my buttons or turn my locker combo, but I find ways to get around the weakness. It is the dropsies that i hate. The other symptoms are just a nuisance that I have learned to live with. I have seen 2 neurologists and 1 MS dr. But noone has diagnosed me.That is my story.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I developed numness and tingling in my hands and feet which occurred at random times having nothing to do with circulation nor cold that had me worried. I also had progressively weakening of my right arm along with spasms and electrical "zingers" all over my head.
This brought me to the ER where an MRI was done and I was told I had 2 small lesions deep in the left hemisphere but they could not possibly be causing my symptoms. The ER Dr. said I had radiculopathy and a bulging disc at c5-6. After a week of decadron, my symptoms exploded, occuring on both sides but randomly and intermittently over the past 4 years.
I have lost my balance, fell down stairs 3 times, constantly cough and choke on my own secretions, have off/on blurry and double vision, huge muscle spasms, deep muscle aches, tons of vibrating sensations, creepy crawly feelings, ice cold stabbing pains, poking or being touched when nobody is there, bending of the neck causing vibrating sensations in my sacral area, extreme fatigue, and occasional urinary feelings like I cant go or it just dribbles slowly like an old lady!
I have had about 6 brain MRIs, VEP, EMG, LPs. The only thing that has shown up is the original 2 small lesions. Everything else is negative. I feel like I am going crazy and have since stopped going to the Dr. for every little thing since nobody is diagnosing me with anything and I think they think I am a hypochondriac.
To make matters worse, I am a neurology RN so one Dr actually thinks I have a psyche disorder where I think I have everything I come across! It is so infuriating. I am just documenting everything now so when I finally get bad I can say I TOLD YOU SO!!!
I know something is wrong. I tried to get life insurance the first year this all happened and disability insurance because I thought for sure I had MS. I was denied both soley on the fact of my symptoms and all the tests that had been run. I just want to know what is wrong with me.
For the most part I am very healthy, run triathlons, work out 3-5 days a week, do yoga, and eat right, healthy weight and size, and feel great most of the time. I get bad when I am stressed, which is not much because I am very easy going; maybe a couple of times a year. The worse it gets is so bad I cannot raise my right arm or do my buttons or turn my locker combo, but I find ways to get around the weakness. It is the dropsies that i hate. The other symptoms are just a nuisance that I have learned to live with. I have seen 2 neurologists and 1 MS dr. But noone has diagnosed me.That is my story.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Comment