Hi,
This is my first time posting on this forum after a year of reading posts. First I want to thank everone on this site for the wealth of information provided. I see the courage of people dealing with incredibly difficult situations and I'm grateful for you. You're truly amazing, wonderful, caring people.
Im looking for a little guidance as to what I have experienced...not a Diagnosis, just ideas as to what I should pursue next. I've been on quite an emotional rollercoaster. It's my first post sorry...somewhat lengthy. I'll try to keep this short-
I'm a 32 year old male and have been very active into weight lifting for about 7 years. I haven't worked out much at all in the last year.
In February of 2008 I started experiencing fasciculations. I've had them in virtually every muscle of my body from head to toe. They were constant in the first few months and have since slowed down a little. I still get them in random spots multiple times a week. They don't start in one muscle and stay. They "hop" around. I also get a feeling in my legs on occasion where they feel like I worked out with them the day before when I did not. They feel weak, tight, tired, and slightly sore. This comes and goes it's not every day or every week for that matter. There have been days when my legs felt downright wobbly almost as if they wanted to give out (they never quite have though). I also get a fatigued feeling in my neck and shoulders on occasion, this comes and goes as well. It's the same feeling as in my legs. I have also had excersise intolerance for a few months now. It's odd, after I workout, which is not often any more, my muscles are no more sore than they used to be...but I'll take a break for two weeks and wake up one day and boom my legs feel very weak. My jaw muscles even get tired from chewing food sometimes.
About 5 months after the fascicualtions started I went to see a Neuro who specializes in NMD. He examined me and declared me healthy. No atrophy and no clinical weakness...said to call him for follow up if something changes. My Fascis got worse so I went back. He scheduled a blood workup, Nerve conduction study, and an EMG (he performed the NCS and EMG himself). Everything came back perfectly normal. This was nearly 6 months after onset of Symptoms. He then had me do an MRI of the Brain as well as MRI's of the Cervical, Thoracic, and Lumbar Spine. Once again everything came back perfectly normal.
3 weeks ago I went in and had my blood taken for CPK levels. I had the test repeated last week. Both test came back with slightly elevated CPK. Sorry I don't know what the level was Neuro just said "slightly" elevated.
Throughout all of this my Neuro has stated that I do not have ALS.
I have a follow up with him to discuss next steps on March 23rd.
Based on my symptoms is there anything else that I should be checking for that might have similar symptoms to ALS.
I don't think my symptoms are typical of ALS but I know there is no such thing as a typical case of ALS. Should I still be concerned about this?
Are there any other tests I should ask about?
I really aprecaite anyone who might be able to take the time and reply.
Thanks,
Shim
This is my first time posting on this forum after a year of reading posts. First I want to thank everone on this site for the wealth of information provided. I see the courage of people dealing with incredibly difficult situations and I'm grateful for you. You're truly amazing, wonderful, caring people.
Im looking for a little guidance as to what I have experienced...not a Diagnosis, just ideas as to what I should pursue next. I've been on quite an emotional rollercoaster. It's my first post sorry...somewhat lengthy. I'll try to keep this short-
I'm a 32 year old male and have been very active into weight lifting for about 7 years. I haven't worked out much at all in the last year.
In February of 2008 I started experiencing fasciculations. I've had them in virtually every muscle of my body from head to toe. They were constant in the first few months and have since slowed down a little. I still get them in random spots multiple times a week. They don't start in one muscle and stay. They "hop" around. I also get a feeling in my legs on occasion where they feel like I worked out with them the day before when I did not. They feel weak, tight, tired, and slightly sore. This comes and goes it's not every day or every week for that matter. There have been days when my legs felt downright wobbly almost as if they wanted to give out (they never quite have though). I also get a fatigued feeling in my neck and shoulders on occasion, this comes and goes as well. It's the same feeling as in my legs. I have also had excersise intolerance for a few months now. It's odd, after I workout, which is not often any more, my muscles are no more sore than they used to be...but I'll take a break for two weeks and wake up one day and boom my legs feel very weak. My jaw muscles even get tired from chewing food sometimes.
About 5 months after the fascicualtions started I went to see a Neuro who specializes in NMD. He examined me and declared me healthy. No atrophy and no clinical weakness...said to call him for follow up if something changes. My Fascis got worse so I went back. He scheduled a blood workup, Nerve conduction study, and an EMG (he performed the NCS and EMG himself). Everything came back perfectly normal. This was nearly 6 months after onset of Symptoms. He then had me do an MRI of the Brain as well as MRI's of the Cervical, Thoracic, and Lumbar Spine. Once again everything came back perfectly normal.
3 weeks ago I went in and had my blood taken for CPK levels. I had the test repeated last week. Both test came back with slightly elevated CPK. Sorry I don't know what the level was Neuro just said "slightly" elevated.
Throughout all of this my Neuro has stated that I do not have ALS.
I have a follow up with him to discuss next steps on March 23rd.
Based on my symptoms is there anything else that I should be checking for that might have similar symptoms to ALS.
I don't think my symptoms are typical of ALS but I know there is no such thing as a typical case of ALS. Should I still be concerned about this?
Are there any other tests I should ask about?
I really aprecaite anyone who might be able to take the time and reply.
Thanks,
Shim