allie/chase dad
Member
- Joined
- Mar 13, 2012
- Messages
- 20
- Reason
- Learn about ALS
- Country
- US
- State
- ky
- City
- lexington
Warning. Long post.
I last posted in march. A lot has happened since then. To review. I had onset of fasiculations in January. inititally a few and in legs then increased and generalized all over. Majority stilll in legs. Then I noticed partial foot drop on the left and very mild vague weakness in bilateral hands. I freaked out went to primary care who ordered a boat load of blood tests and MRI of head, c,t,l spine all normal. Following week Neuro appointment with EMG/NCS totally normal. Also added CK which was normal. Thank God at this point. Then the doubts started to creep-the neuro took 1-2 seconds per EMG stick. also no sound. I figured this is clearly BFS/anxiety and worked on getting my mind straight.
2-3 weeks later the weakness in my right hand seemed to be getting worse. Ominously I was getting atrophy in ulnar and radial distribution of hand. I know what your thinking. Im nuts.
I should say at this point that I'm a physician. I know nuts. I also know that some people don't know when they are nuts. So I just assumed i had out of the blue developed a mean case of health anxiety. Meanwhile I had the slow progression of hand and forearm weakness worse on right and neck fatigue, stiffness and soreness-worse on right. I also just started to feel significantly more fatigued in general. No more running- i previously ran 20-40 miles a week and 10-12 mile runs were in no way a big deal for me. My symptoms were slow steady and progressive. There were no bad days. There were no good days. THings just kept getting very slowly worse.
Neuro follow up. She agreed something seemed wrong wants a repeat emg/ncv 8 weeks out from original. Im now scared and depressed but this is all you can do. I continue to live my life as best I can. Tuesday was the f/u. I now have bilateral carpal tunnel and cubital tunnel syndrome. He Spent an hour checking and rechecking NCVs. and the final 1-2 minutes on the emg. Again 8-10 sticks and 1-2 seconds per stick. EMG completely normal he says. Tells me he thinks I have HNPP. In summary thats a rare genetic disease that didnt fit my clinical picture. His partner who saw me after the test had nothing new to add. She did say that in no way should I worry about ALS. OK great. Problem was something felt wrong. They in no way could explain the clinical picture. I finally decided enough is enough. No more sneaking around and not telling people because i was afraid i'd be seen as a crazy MD. I consulted a brilliant neurosurgeon i work with and he got me to see a very smart neurologist who repeated my EMG today and it was different. NCVS showed ulnar neuropathy on right. otherwise only mild abnormalities. EMG of my left anterior tibialis (and the other muscle supplied by the peroneal nerve) showed 3+fibs, 2+positive sharp waves. Also Amplitude and recruitement were abnormal but I dont recall the direction. Full EMG report not available right now. Yes this is the muscle that I first noticed weakness in in early March. My right hand is now significantly atrophied (and all of my physicians agree) but EMG of it was normal. Emg was normal elsewhere. New neurologist does not believe it is ALS but doesnt know what it is. It sounded Like he was leaning towards MMN but he didnt specify. He is referring me to someone he trusts in the community. What is going on?
Sorry for the long post. You guys have a tremendous community here and I am blessed to be able to ask questions or simply vent if nothing else. Thanks.
I last posted in march. A lot has happened since then. To review. I had onset of fasiculations in January. inititally a few and in legs then increased and generalized all over. Majority stilll in legs. Then I noticed partial foot drop on the left and very mild vague weakness in bilateral hands. I freaked out went to primary care who ordered a boat load of blood tests and MRI of head, c,t,l spine all normal. Following week Neuro appointment with EMG/NCS totally normal. Also added CK which was normal. Thank God at this point. Then the doubts started to creep-the neuro took 1-2 seconds per EMG stick. also no sound. I figured this is clearly BFS/anxiety and worked on getting my mind straight.
2-3 weeks later the weakness in my right hand seemed to be getting worse. Ominously I was getting atrophy in ulnar and radial distribution of hand. I know what your thinking. Im nuts.
I should say at this point that I'm a physician. I know nuts. I also know that some people don't know when they are nuts. So I just assumed i had out of the blue developed a mean case of health anxiety. Meanwhile I had the slow progression of hand and forearm weakness worse on right and neck fatigue, stiffness and soreness-worse on right. I also just started to feel significantly more fatigued in general. No more running- i previously ran 20-40 miles a week and 10-12 mile runs were in no way a big deal for me. My symptoms were slow steady and progressive. There were no bad days. There were no good days. THings just kept getting very slowly worse.
Neuro follow up. She agreed something seemed wrong wants a repeat emg/ncv 8 weeks out from original. Im now scared and depressed but this is all you can do. I continue to live my life as best I can. Tuesday was the f/u. I now have bilateral carpal tunnel and cubital tunnel syndrome. He Spent an hour checking and rechecking NCVs. and the final 1-2 minutes on the emg. Again 8-10 sticks and 1-2 seconds per stick. EMG completely normal he says. Tells me he thinks I have HNPP. In summary thats a rare genetic disease that didnt fit my clinical picture. His partner who saw me after the test had nothing new to add. She did say that in no way should I worry about ALS. OK great. Problem was something felt wrong. They in no way could explain the clinical picture. I finally decided enough is enough. No more sneaking around and not telling people because i was afraid i'd be seen as a crazy MD. I consulted a brilliant neurosurgeon i work with and he got me to see a very smart neurologist who repeated my EMG today and it was different. NCVS showed ulnar neuropathy on right. otherwise only mild abnormalities. EMG of my left anterior tibialis (and the other muscle supplied by the peroneal nerve) showed 3+fibs, 2+positive sharp waves. Also Amplitude and recruitement were abnormal but I dont recall the direction. Full EMG report not available right now. Yes this is the muscle that I first noticed weakness in in early March. My right hand is now significantly atrophied (and all of my physicians agree) but EMG of it was normal. Emg was normal elsewhere. New neurologist does not believe it is ALS but doesnt know what it is. It sounded Like he was leaning towards MMN but he didnt specify. He is referring me to someone he trusts in the community. What is going on?
Sorry for the long post. You guys have a tremendous community here and I am blessed to be able to ask questions or simply vent if nothing else. Thanks.