SkyFox720
New member
- Joined
- Jul 23, 2022
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- ID
- City
- Twin Falls
Hello all,
A while back I posted a thread (now closed) regarding progressively advancing issues on my left side. I had stumbling and balance problems, burning paresthesias in my left calf and tibial muscles, constant twitching night and day, and my left calf just felt like jello and was visibly smaller than my right.
Problems then developed in my left thumb, starting with fasiculations and painful contractions of my thenar muscle anytime I tripped something. This would pull my thumb inward multiple times and was pretty terrifying. Over time I gradually began having trouble with my other fingers too. Index finger is tight and painful and sometimes I have trouble using it. Ring finger is weak and has a tremor in it. Sometimes I have trouble holding my phone ..and I always have trouble typing with my left hand which wasnt there before (I used to type 80wpm)
Paresthesias exist in my left hand and forearm and the twitching is particularly strong in two forearm muscles..sometimes enough to wake me up at night. I have almost no twitches in the right side of my body however. It's all left arm, left thenar and other hand muscles, and left leg. I get fasiculations in proximal (bicep, tricep, hamstring, thigh) and distal (forearm, hand muscles, thenar, all lower leg muscles, sometimes foot muscle) areas.
I initially was scheduled for an EMG Aug 31, however it got moved up to August 1, so I had my EMG about a month ago.
The results were surprising. It was completely clean. I had some doubts about the outcome...as sometimes I misunderstood the direction the doctor gave and would extend rather than contract a muscle, and the other would have to correct me. He also mentioned he knew I wouldn't have ALS before he did any kind of clinical exam on me or hooked me up to anything. So that worries me a bit. He noted no atrophy. And diagnosed me with Fibromyalgia.
Here's where the problems begin and my questions arise..
After I went back to my primary care physician with my good EMG results and clinical findings by the Neuro, he disagreed with the neurologist. Noting that I very clearly had measurable atrophy and even brought out his tape measure to prove it. He was going to refer me on to an ALS clinic in another state, but ended up getting a second opinion from a different local neurologist who took a look at my EMG report and didn't see anything alarming. He suggested my doctor run a Ferritin and CK panel and see what came of that.
Ferritin was low. CK was low normal. Typically, but not always....these are elevated in ALS. So at that point any plans for a referral out of state came to an end.
Meanwhile more bloodwork was done, and because I also have Hypophosphatasia I have a very elevated serum B6 level which is found in that disease. Saw an endocrinologist who told me that yes B6 causes all sorts of neurological problems but not...on just one side. She ruled out B6 being the cause of my problems. We discussed m clean EMG and she told me something that caused the floor to drop out underneath me....
She said that EMGs take time to show damage. Even if you already have symptoms they may no show. She sees a lot of people with nerve nerve damage from diabetes and it doesn't show up on the EMG until 6 months to a year after their first symptoms of nerve involvement.
This goes against what the stickies says and is very confusing. While my endo sees lots of patients with neuropathy and diabetes related nerve damage, she's not a neurologist. I can't imagine though why a specialist would say that an EMG doesn't show damage until months after your symptoms began.
So now I'm thinking I got m EMG done too early. Even though that contradicts what has been said here.
Meanwhile since my EMG things have only progressed further downhill. I can see the bones and tendons in my left hand now. I'm seeing the beginnings of palmar atrophy. My thumb is stiff and tight and I have trouble hitting the left keys when typing and I have to rely on autocorrect to be intelligible at all in text. I've developed new wrist weakness, my forearm aches and twitches all the time, and I'm still having issues in my left leg. Everything has kind of spread and progressed upwards, and I'm having trouble sleeping. My muscles hurt after the smallest exertion. My thenar and FDI are always super sore. It's like the soreness you get after a workout...but I may have only been using a spoon or opening a drink and I feel that soreness.
So I'm confused. If my EMG was clean...why am I getting worse? Why does my endo think that first you get symptoms then the bad EMG comes later? My issues first began with stuff that lines up with UMN issues like gait problems and stumbling and balance, and I've read you can get a clean EMG in MND if it begins in your upper motor neurons...but by the time I had my EMG I was already having issues that would have lined up with LMN signs.
My reflexes are 2+ bilaterally in the deep tendons. NCS was normal except slight slowing in hr left elbow. Needle EMG was normal and no fasiculations we're recorded during the test window.
Since things are progressing, my doctors are contradicting each other, the muscle twitches are disruptive, the pain and soreness and stiffness are limiting my functionality, bones an tendons re becoming more visible, and this burning sensation keeps coming and going....I think I need a second EMG.
If my doctors could all agree I'd have a lot more faith and hope..but when one doctor gives me hope another one sort of knocks it down. I'm at a loss.
A while back I posted a thread (now closed) regarding progressively advancing issues on my left side. I had stumbling and balance problems, burning paresthesias in my left calf and tibial muscles, constant twitching night and day, and my left calf just felt like jello and was visibly smaller than my right.
Problems then developed in my left thumb, starting with fasiculations and painful contractions of my thenar muscle anytime I tripped something. This would pull my thumb inward multiple times and was pretty terrifying. Over time I gradually began having trouble with my other fingers too. Index finger is tight and painful and sometimes I have trouble using it. Ring finger is weak and has a tremor in it. Sometimes I have trouble holding my phone ..and I always have trouble typing with my left hand which wasnt there before (I used to type 80wpm)
Paresthesias exist in my left hand and forearm and the twitching is particularly strong in two forearm muscles..sometimes enough to wake me up at night. I have almost no twitches in the right side of my body however. It's all left arm, left thenar and other hand muscles, and left leg. I get fasiculations in proximal (bicep, tricep, hamstring, thigh) and distal (forearm, hand muscles, thenar, all lower leg muscles, sometimes foot muscle) areas.
I initially was scheduled for an EMG Aug 31, however it got moved up to August 1, so I had my EMG about a month ago.
The results were surprising. It was completely clean. I had some doubts about the outcome...as sometimes I misunderstood the direction the doctor gave and would extend rather than contract a muscle, and the other would have to correct me. He also mentioned he knew I wouldn't have ALS before he did any kind of clinical exam on me or hooked me up to anything. So that worries me a bit. He noted no atrophy. And diagnosed me with Fibromyalgia.
Here's where the problems begin and my questions arise..
After I went back to my primary care physician with my good EMG results and clinical findings by the Neuro, he disagreed with the neurologist. Noting that I very clearly had measurable atrophy and even brought out his tape measure to prove it. He was going to refer me on to an ALS clinic in another state, but ended up getting a second opinion from a different local neurologist who took a look at my EMG report and didn't see anything alarming. He suggested my doctor run a Ferritin and CK panel and see what came of that.
Ferritin was low. CK was low normal. Typically, but not always....these are elevated in ALS. So at that point any plans for a referral out of state came to an end.
Meanwhile more bloodwork was done, and because I also have Hypophosphatasia I have a very elevated serum B6 level which is found in that disease. Saw an endocrinologist who told me that yes B6 causes all sorts of neurological problems but not...on just one side. She ruled out B6 being the cause of my problems. We discussed m clean EMG and she told me something that caused the floor to drop out underneath me....
She said that EMGs take time to show damage. Even if you already have symptoms they may no show. She sees a lot of people with nerve nerve damage from diabetes and it doesn't show up on the EMG until 6 months to a year after their first symptoms of nerve involvement.
This goes against what the stickies says and is very confusing. While my endo sees lots of patients with neuropathy and diabetes related nerve damage, she's not a neurologist. I can't imagine though why a specialist would say that an EMG doesn't show damage until months after your symptoms began.
So now I'm thinking I got m EMG done too early. Even though that contradicts what has been said here.
Meanwhile since my EMG things have only progressed further downhill. I can see the bones and tendons in my left hand now. I'm seeing the beginnings of palmar atrophy. My thumb is stiff and tight and I have trouble hitting the left keys when typing and I have to rely on autocorrect to be intelligible at all in text. I've developed new wrist weakness, my forearm aches and twitches all the time, and I'm still having issues in my left leg. Everything has kind of spread and progressed upwards, and I'm having trouble sleeping. My muscles hurt after the smallest exertion. My thenar and FDI are always super sore. It's like the soreness you get after a workout...but I may have only been using a spoon or opening a drink and I feel that soreness.
So I'm confused. If my EMG was clean...why am I getting worse? Why does my endo think that first you get symptoms then the bad EMG comes later? My issues first began with stuff that lines up with UMN issues like gait problems and stumbling and balance, and I've read you can get a clean EMG in MND if it begins in your upper motor neurons...but by the time I had my EMG I was already having issues that would have lined up with LMN signs.
My reflexes are 2+ bilaterally in the deep tendons. NCS was normal except slight slowing in hr left elbow. Needle EMG was normal and no fasiculations we're recorded during the test window.
Since things are progressing, my doctors are contradicting each other, the muscle twitches are disruptive, the pain and soreness and stiffness are limiting my functionality, bones an tendons re becoming more visible, and this burning sensation keeps coming and going....I think I need a second EMG.
If my doctors could all agree I'd have a lot more faith and hope..but when one doctor gives me hope another one sort of knocks it down. I'm at a loss.
