rhythman
Active member
- Joined
- Oct 22, 2009
- Messages
- 91
- Reason
- Learn about ALS
- Country
- CA
- State
- New Brunswick
- City
- xxxxxxxx
Firstly, thanks to all who have read my posts these past 6 weeks and helped me out. I also want to tell you that I no longer look up anything on Dr. Google, and have only dealt with real doctors recently. That was good advice.
I met again briefly with my neuro yesterday and he said he wasn't ready to definetely say als yet, but it's "something I have to seriously consider now". He said the emg results were "abnormal" and that along with the clean mri's, normal bloodwork and how I've progressed physically has caused him to consider als. I go back in January to see him again. I'm still hoping for another diagnosed, but there are 2 things that are really frustarating. (Actually, there are several things, but there are 2 in particular that I want to 'rant' about. Thanks in advance for 'listening'.)
1. Even though he's looking at als as the culprit, there are some things he said were not really typical. He suggested that my presenting symptom was probably the ear pain when swallowing, that I'd had periodically (but now constantly) since March. He said that would make sense with the bulbar issues I'm having, but "bulbar als doesn't typically present with pain like that...although it can". He also repeated essentially that same sentence when I asked about the limb numbness/pins & needles that wakes me up nightly, the intense pain on the bottom of both feet and the palms of my hands and the rapid progression of weakness in all 4 limbs and the bulbar region. All "Not really typical."
So many things he said were "atypical", but he also said the test results to date still point toward als...sigh!
2. Although this is more widespread and intense 'this time', I've had many of these symptoms seperately before and they've always gone away. They're just not going away this time. Twenty years ago, I had right shoulder fatigue so badly, I could not hold a newspaper up to read it. That lasted months, then went away. I presently get wicked 'exertion headaches' at the base of my neck. Had those off and on for years. They won't go away this time. While sitting at rest (not while moving), one or more limbs just start shaking as they would if I were suffering from hypothermia. This can last up to 15 sec. at a time and is visible to anyone around me...it looks like some kind of seizure. I've had this many, many, many times during the past 30 years. I'll have it daily for weeks/months, then nothing for awhile. It's always come and gone. My tongue has changed shape once before and then gone back to normal ,and I've had weeks of hoarseness which has come and gone. The neuro even pointed out that I have "significant atrophy" at the base of my right thumb (which is why I can't grip things or write well anymore), but I've had several 'episodes'-2 to 3 months each-of intense pain in that exact spot since the mid 90's!
The neuro said that all of this is interesting and suggests a neurological history, but all he can deal with is what he sees now. Sigh again.
I just don't know what to think. So much is so familiar, but it's all come at once this time, brought a few new symptoms too, and isn't going away!
Thanks for 'listening'.
I met again briefly with my neuro yesterday and he said he wasn't ready to definetely say als yet, but it's "something I have to seriously consider now". He said the emg results were "abnormal" and that along with the clean mri's, normal bloodwork and how I've progressed physically has caused him to consider als. I go back in January to see him again. I'm still hoping for another diagnosed, but there are 2 things that are really frustarating. (Actually, there are several things, but there are 2 in particular that I want to 'rant' about. Thanks in advance for 'listening'.)
1. Even though he's looking at als as the culprit, there are some things he said were not really typical. He suggested that my presenting symptom was probably the ear pain when swallowing, that I'd had periodically (but now constantly) since March. He said that would make sense with the bulbar issues I'm having, but "bulbar als doesn't typically present with pain like that...although it can". He also repeated essentially that same sentence when I asked about the limb numbness/pins & needles that wakes me up nightly, the intense pain on the bottom of both feet and the palms of my hands and the rapid progression of weakness in all 4 limbs and the bulbar region. All "Not really typical."
So many things he said were "atypical", but he also said the test results to date still point toward als...sigh!
2. Although this is more widespread and intense 'this time', I've had many of these symptoms seperately before and they've always gone away. They're just not going away this time. Twenty years ago, I had right shoulder fatigue so badly, I could not hold a newspaper up to read it. That lasted months, then went away. I presently get wicked 'exertion headaches' at the base of my neck. Had those off and on for years. They won't go away this time. While sitting at rest (not while moving), one or more limbs just start shaking as they would if I were suffering from hypothermia. This can last up to 15 sec. at a time and is visible to anyone around me...it looks like some kind of seizure. I've had this many, many, many times during the past 30 years. I'll have it daily for weeks/months, then nothing for awhile. It's always come and gone. My tongue has changed shape once before and then gone back to normal ,and I've had weeks of hoarseness which has come and gone. The neuro even pointed out that I have "significant atrophy" at the base of my right thumb (which is why I can't grip things or write well anymore), but I've had several 'episodes'-2 to 3 months each-of intense pain in that exact spot since the mid 90's!
The neuro said that all of this is interesting and suggests a neurological history, but all he can deal with is what he sees now. Sigh again.
I just don't know what to think. So much is so familiar, but it's all come at once this time, brought a few new symptoms too, and isn't going away!
Thanks for 'listening'.