IssuesInOhio
Member
- Joined
- May 3, 2019
- Messages
- 26
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- OH
- City
- Columbus
Hey Everyone. I will try to make this brief and to the point. I thank everyone in advance for your responses.
I want to preface this by stating I have read the sticky at the top and I have read a lot of the posts.
Here is my situation:
In 2008 I had issues of muscle pain, muscle loss, and cramps and fasics. I was terrified when I looked up what it could be.
It was progressive but it was also not muscle atrophy as much as global wasting. Doctors suspected something was wrong and long story short I ended up at a neuromusclular specialist. Had a total of 4 EMG's done in about 15 months, all came back clear for ALS.
Had a muscle biopsy done. Came back clean.
I was diagnosed with fibromyalgia and BFS in 2010. Since 2010, I have had periods where I am back to 90% and brief periods of flare ups where my muscles hurt, get myalgia, and the twitching never goes away for 10 years.
I know that history does not show ALS, but I though it was important to note that I have been through the process of ruling out ALS. I didn't include some of the details that in the early stages that led them to test me for ALS since its not really relevant.
Fast forward to January of this year. I started to have some new issues.
My right hip started to hurt and I started to notice some muscle loss. Then my right calf started to really hurt and I started to notice muscle atrophy with cramps and twitches. Then within a week my left calf has some cramping along with my right tricep and my right chest muscle. I have cramping and fasics and they are brutal and are non stop day and night all over, even in my face and head.
My right calf was the first thing to really start with these issues and it has progressed. When I walk a typical amount, it gets sore and burns and cramps. My left glut and my right hip are bad as well.
I honestly don't see how I could have ALS because that would mean that I didn't have in in 2010 when I had weird symptoms and 4 clean EMG's and then was unlucky enough to be one of the 500 people in my 40-45 age group to get diagnosed each year and coincedentially was tested and cleared of it 10 years ago? That would seem just astonomically unlikely but my symptoms are scaring me.
Here are my questions:
-Has anyone ever heard of someone having BFS that turned into ALS or PLS?
-Does BFS or Fibro lead to a higher chance of getting ALS?
-Does the weakness come on gradually as burning and painful cramping as the muscle gets worse or is it that one day you just cant use that finger or foot or calf?
-Does it start in one spot and spread out from there or can it be more just hit a bunch of spots all within 3-4 months?
-Is there any type of MND that anyone has seen that you can have for 10 years without steady progression where it waxes and wanes and then it can just change one day to go down hill quickly.
I have a neurologist appt set up for June 3rd and my GP says my calf does look like atrophy. Has anyone ever see someone on these boards get tested for ALS and cleared then 10 years later has it??
I want to preface this by stating I have read the sticky at the top and I have read a lot of the posts.
Here is my situation:
In 2008 I had issues of muscle pain, muscle loss, and cramps and fasics. I was terrified when I looked up what it could be.
It was progressive but it was also not muscle atrophy as much as global wasting. Doctors suspected something was wrong and long story short I ended up at a neuromusclular specialist. Had a total of 4 EMG's done in about 15 months, all came back clear for ALS.
Had a muscle biopsy done. Came back clean.
I was diagnosed with fibromyalgia and BFS in 2010. Since 2010, I have had periods where I am back to 90% and brief periods of flare ups where my muscles hurt, get myalgia, and the twitching never goes away for 10 years.
I know that history does not show ALS, but I though it was important to note that I have been through the process of ruling out ALS. I didn't include some of the details that in the early stages that led them to test me for ALS since its not really relevant.
Fast forward to January of this year. I started to have some new issues.
My right hip started to hurt and I started to notice some muscle loss. Then my right calf started to really hurt and I started to notice muscle atrophy with cramps and twitches. Then within a week my left calf has some cramping along with my right tricep and my right chest muscle. I have cramping and fasics and they are brutal and are non stop day and night all over, even in my face and head.
My right calf was the first thing to really start with these issues and it has progressed. When I walk a typical amount, it gets sore and burns and cramps. My left glut and my right hip are bad as well.
I honestly don't see how I could have ALS because that would mean that I didn't have in in 2010 when I had weird symptoms and 4 clean EMG's and then was unlucky enough to be one of the 500 people in my 40-45 age group to get diagnosed each year and coincedentially was tested and cleared of it 10 years ago? That would seem just astonomically unlikely but my symptoms are scaring me.
Here are my questions:
-Has anyone ever heard of someone having BFS that turned into ALS or PLS?
-Does BFS or Fibro lead to a higher chance of getting ALS?
-Does the weakness come on gradually as burning and painful cramping as the muscle gets worse or is it that one day you just cant use that finger or foot or calf?
-Does it start in one spot and spread out from there or can it be more just hit a bunch of spots all within 3-4 months?
-Is there any type of MND that anyone has seen that you can have for 10 years without steady progression where it waxes and wanes and then it can just change one day to go down hill quickly.
I have a neurologist appt set up for June 3rd and my GP says my calf does look like atrophy. Has anyone ever see someone on these boards get tested for ALS and cleared then 10 years later has it??