rhythman
Active member
- Joined
- Oct 22, 2009
- Messages
- 91
- Reason
- Learn about ALS
- Country
- CA
- State
- New Brunswick
- City
- xxxxxxxx
Hi All
I only posted a few times on this wonderful forum, but I promised a few weeks ago that I would not post about my situation again until I saw neuro and had tests. Here's an update.
All bloodwork and mri were normal, but now my neuro will be off work for awhile (illness), so I have to get referred to another. All this could take a bit of time.
History: The neuro asked if there were any symptoms of any kind before late August (which is when I told him things started). I told him that I did have 2 bouts of swallowing and ear pain which was quite intense. In both cases (March and June), the doctors at the local clinic suggested eustachian tube dysfunction. I asked the neuro if those could have been early bulbar symptoms. He said "Possibly-especially since you are having speech/swallowing problems-but not really common."
The symptoms and their progression as of late has me confused. The only reason I even consider als at all is because of all the bulbar symptoms. I appreciate that they can come and go, so the coming and going of slurred speech, chewing problems, nasal voice, swallowing problems, excess saliva and choking episodes (dry foods) that I've had for 3 months suggests als based on all that I read.
I know that there seem to be an infinite number of onset patterns and progression rates and patterns, but I'm trying to convince myself that some of my symptoms might point away from als. Specifically:
1. Progression rate of limb issues. Seven weeks ago, I could run 40 min. and drum for a 90 min set with my band. Now, I can not run for even 5 min. without cramping, knees hurting, and so much leg fatigue that I literally stop...whether I want to our not. I can't drum for more than 5-10 min. and arms and legs simply won't work...they stop too.
2. Symmetry/Bilateral. All limbs are losing strength and coordination at the same rate. I went to the gym yesterday, and could only do one third the number of reps per set (4 instead of the 12) that I was doing just a few weeks ago. Same weight...fewer reps. Both hands are equally clumsy.
3. Numbness/Pins & needles/Limbs 'asleep'. I have read that, despite conventional wisdom, these issues can be present with als. I have awakened nearly every night for 4 weeks now with at least 2, and sometimes all 4, limbs 'asleep'. I wake up on my back and am immediately aware that my forearms, hands, calves and feet are 'asleep'. I have to move them to get feeling back. When I wake up in the morning, I repeat the process.
4. My tongue completely changed appearance in a few weeks. Today I am speaking really clearly, but my tongue doesn't even look like the same appendage it did a few weeks back. It was thick and always went 'pointy' when I stuck it out; now it looks like someone flattened it, made it really wide and it folds into a 'U' shape when I stick it out. I remember a post by BethU to another person where she suggested that speech problems should preceed obvious tongue changes. My speech issues come and go, but my tongue has changed big time.
5. Pain. Not severe, but calves, arms cramp, knees, elbows and wrists hurt. Knees are worst. Climbing and decending stairs hurts so much, it's ridiculous.
Thoughts?
Thanks for listening. I didn't want to bother everyone again, but with worsening symtoms and a neuro who'll be out, I might be in limbo for awhile and would appreciate even very brief feedback. Thank you.
I only posted a few times on this wonderful forum, but I promised a few weeks ago that I would not post about my situation again until I saw neuro and had tests. Here's an update.
All bloodwork and mri were normal, but now my neuro will be off work for awhile (illness), so I have to get referred to another. All this could take a bit of time.
History: The neuro asked if there were any symptoms of any kind before late August (which is when I told him things started). I told him that I did have 2 bouts of swallowing and ear pain which was quite intense. In both cases (March and June), the doctors at the local clinic suggested eustachian tube dysfunction. I asked the neuro if those could have been early bulbar symptoms. He said "Possibly-especially since you are having speech/swallowing problems-but not really common."
The symptoms and their progression as of late has me confused. The only reason I even consider als at all is because of all the bulbar symptoms. I appreciate that they can come and go, so the coming and going of slurred speech, chewing problems, nasal voice, swallowing problems, excess saliva and choking episodes (dry foods) that I've had for 3 months suggests als based on all that I read.
I know that there seem to be an infinite number of onset patterns and progression rates and patterns, but I'm trying to convince myself that some of my symptoms might point away from als. Specifically:
1. Progression rate of limb issues. Seven weeks ago, I could run 40 min. and drum for a 90 min set with my band. Now, I can not run for even 5 min. without cramping, knees hurting, and so much leg fatigue that I literally stop...whether I want to our not. I can't drum for more than 5-10 min. and arms and legs simply won't work...they stop too.
2. Symmetry/Bilateral. All limbs are losing strength and coordination at the same rate. I went to the gym yesterday, and could only do one third the number of reps per set (4 instead of the 12) that I was doing just a few weeks ago. Same weight...fewer reps. Both hands are equally clumsy.
3. Numbness/Pins & needles/Limbs 'asleep'. I have read that, despite conventional wisdom, these issues can be present with als. I have awakened nearly every night for 4 weeks now with at least 2, and sometimes all 4, limbs 'asleep'. I wake up on my back and am immediately aware that my forearms, hands, calves and feet are 'asleep'. I have to move them to get feeling back. When I wake up in the morning, I repeat the process.
4. My tongue completely changed appearance in a few weeks. Today I am speaking really clearly, but my tongue doesn't even look like the same appendage it did a few weeks back. It was thick and always went 'pointy' when I stuck it out; now it looks like someone flattened it, made it really wide and it folds into a 'U' shape when I stick it out. I remember a post by BethU to another person where she suggested that speech problems should preceed obvious tongue changes. My speech issues come and go, but my tongue has changed big time.
5. Pain. Not severe, but calves, arms cramp, knees, elbows and wrists hurt. Knees are worst. Climbing and decending stairs hurts so much, it's ridiculous.
Thoughts?
Thanks for listening. I didn't want to bother everyone again, but with worsening symtoms and a neuro who'll be out, I might be in limbo for awhile and would appreciate even very brief feedback. Thank you.