brian84
Member
- Joined
- Jan 19, 2013
- Messages
- 23
- Reason
- Learn about ALS
- Country
- ca
- State
- somewhere
- City
- somewhere
Its been some time since I posted here, as I thought I finally had a diagnosis but it seems things have changed again. I'll start by giving the backstory on how this all began. Summer of last year I started to experience muscle twitching, rippling, and weakness. I was seen by a gp who was very dismissive of my complaints and thought it was all in my head or anxiety related. The weakness became worse and I started getting bad cramping around the fall of that year. I was seen at the hospital er several times with no real answers. Eventually they sent me to an internist who tested my for all kinds of diseases and deficiency's but found nothing of relevance. I also had mri's and ct's that didn't show anything they thought would cause this.
Things continued to progress and I was sent to a neurologist. She repeated some of the tests and performed several emgs that she said indicated a motor neuropathy. after seeing me a few months she said I had a motor neuron disease and referred me to a hospital that has a unit that specialises in als. They gave me another emg that was done by a student and was said to be completely normal. I was given a diagnosis of cramp fasciculation syndrome. Shortly after that I was contacted by them to start clinical trials for an als drug. I found this confusing so I called them and was told that I had been rediagnosed with a variant of als and I should come in and talk to the dr. He told me that it was a mistake and I was fine as I had never had a bad emg. I made him aware I had 4 bad ones before I got refered to the clinic. he sent me to another dr for a second opinion.
The new dr looked over my info and said cramp fasciculation was impossible as it wouldn't have caused the damage shown on earlier emgs. He diagnosed me with post infectious neuropathy.
Later I followed up with the original neuro as I started feeling worse. she did another emg and said it was the same or slightly worse then the ones she had done the year before. She still believes I have a mnd. I am so frustrated and have no idea what to do or who to believe. Something is obviously wrong but no one seems to be able to figure it out.
Things continued to progress and I was sent to a neurologist. She repeated some of the tests and performed several emgs that she said indicated a motor neuropathy. after seeing me a few months she said I had a motor neuron disease and referred me to a hospital that has a unit that specialises in als. They gave me another emg that was done by a student and was said to be completely normal. I was given a diagnosis of cramp fasciculation syndrome. Shortly after that I was contacted by them to start clinical trials for an als drug. I found this confusing so I called them and was told that I had been rediagnosed with a variant of als and I should come in and talk to the dr. He told me that it was a mistake and I was fine as I had never had a bad emg. I made him aware I had 4 bad ones before I got refered to the clinic. he sent me to another dr for a second opinion.
The new dr looked over my info and said cramp fasciculation was impossible as it wouldn't have caused the damage shown on earlier emgs. He diagnosed me with post infectious neuropathy.
Later I followed up with the original neuro as I started feeling worse. she did another emg and said it was the same or slightly worse then the ones she had done the year before. She still believes I have a mnd. I am so frustrated and have no idea what to do or who to believe. Something is obviously wrong but no one seems to be able to figure it out.