HG in Houston
New member
- Joined
- Mar 22, 2013
- Messages
- 5
- Reason
- Learn about ALS
- Country
- US
- State
- texas
- City
- spring
Before I say anything about me I first want to say I have a great amount of respect and admiration for those of you diagnosed. Frankly I was aware of ALS but never knew what it was and over the past several weeks have read some moving stories about individuals. May God give everyone diagnosed with the strength and wisdom to enjoy every moment of every day.
I wanted to run my story to get the forum's input.
In December of 2011 I began to experience muscle twitches and spasms in my right calf. The muscles twitchs are more like heart beats. I can watch an area go in and out. Does not appear to be wringing like worms. I thought nothing of the twitches and thought it was a pottassium or magnesium deficiency and bought some supplements.
In September 2012 I noticed that I could no longer walk on the heel of my right foot and then I started to limp. I later learned this was foot drop. Now I do not have 100% foot drop meaning that I need to drag my foot around me. On the scale of 1 to 5 I am graded as a low 3. I have some doriflexion that allow me to drive. In November of 2012 I could walk less and less and I notice my right quadricep was substantially smaller than my left as well as my buttocks. I went to an ortho who immediately ordered an mri. I then had an emg and nerve conduction study of my left and right leg which the neurolgist believed was tied spinal compression of the nerves. The NCV finding was that my right peroneal nerve showed no response (thus the drop foot). All all other nerves were normal. EMG said the following:
1. Needle eval of the right antierio tib, right gastroc and right semimembraneous muscles showed increased motor unit amplitude, increased motor unit duration, moderatley increased polyphasic potentials, and dimished recruitment
2. Right vastus medialis, the left semimembranosus and the left gastroc muscles showed moderately increased polyphasic potentials.
3. Right vastus lateralis and the left anterior tibilias muscles showed increased motor unit amplitude and moderately increased polyphasic potentials.
4. The left vastus medialis and the left vastus lateralis muscles showed slight increased polyphasic potentials.
I did explain that I feared something like ALS and she said it was not ALS but did not explain why the procedure did not support it.
The mri showed some spinal stenosis at l5/s1 and everyone thought back surgery was best including the neurologist. Surgery was performed with no issues on 1/24. I started walking after surgery.
After the surgery I could walk 1/2 mile before muscle fatigue forced me to stop. Now I am down to may 1/10 of a mile just 8 weeks later and I have been doing physical theraphy twice a week. I was concerned and went back to the doctor and after giving me full physical honed in that I had hyperreflex in my left knee and that I appeared to have reduced reflexes in my arms. He asked me if I had twitches and I explained that I s twitching all over (especially in both legs) as noted above. I also feel like my forearms and fingers are weaker (anxiety driven)? He also noted that my quad and glute atrophy would not be caused by issues with my l5/s1 nerves. So implied something may be going on.
He referred me back to neurologist who has done a battery of bloodwork and brain and cervical mri. I get results back on Tuesday 3/26.
I know some of the advice is wait the hell until tuesday but I am just so worried. I read the sticky on weakness versus fatigue and I was thinking after reading that I have fatigue but I am losing my ability to walk. However I am unable to walk on my right heel. I have measured my quads and they have not shrunk any since late December. Concerned about the feeling of weakness in my hands but so far I have not dropped anything, etc.
Thanks in advance for any comments.
I wanted to run my story to get the forum's input.
In December of 2011 I began to experience muscle twitches and spasms in my right calf. The muscles twitchs are more like heart beats. I can watch an area go in and out. Does not appear to be wringing like worms. I thought nothing of the twitches and thought it was a pottassium or magnesium deficiency and bought some supplements.
In September 2012 I noticed that I could no longer walk on the heel of my right foot and then I started to limp. I later learned this was foot drop. Now I do not have 100% foot drop meaning that I need to drag my foot around me. On the scale of 1 to 5 I am graded as a low 3. I have some doriflexion that allow me to drive. In November of 2012 I could walk less and less and I notice my right quadricep was substantially smaller than my left as well as my buttocks. I went to an ortho who immediately ordered an mri. I then had an emg and nerve conduction study of my left and right leg which the neurolgist believed was tied spinal compression of the nerves. The NCV finding was that my right peroneal nerve showed no response (thus the drop foot). All all other nerves were normal. EMG said the following:
1. Needle eval of the right antierio tib, right gastroc and right semimembraneous muscles showed increased motor unit amplitude, increased motor unit duration, moderatley increased polyphasic potentials, and dimished recruitment
2. Right vastus medialis, the left semimembranosus and the left gastroc muscles showed moderately increased polyphasic potentials.
3. Right vastus lateralis and the left anterior tibilias muscles showed increased motor unit amplitude and moderately increased polyphasic potentials.
4. The left vastus medialis and the left vastus lateralis muscles showed slight increased polyphasic potentials.
I did explain that I feared something like ALS and she said it was not ALS but did not explain why the procedure did not support it.
The mri showed some spinal stenosis at l5/s1 and everyone thought back surgery was best including the neurologist. Surgery was performed with no issues on 1/24. I started walking after surgery.
After the surgery I could walk 1/2 mile before muscle fatigue forced me to stop. Now I am down to may 1/10 of a mile just 8 weeks later and I have been doing physical theraphy twice a week. I was concerned and went back to the doctor and after giving me full physical honed in that I had hyperreflex in my left knee and that I appeared to have reduced reflexes in my arms. He asked me if I had twitches and I explained that I s twitching all over (especially in both legs) as noted above. I also feel like my forearms and fingers are weaker (anxiety driven)? He also noted that my quad and glute atrophy would not be caused by issues with my l5/s1 nerves. So implied something may be going on.
He referred me back to neurologist who has done a battery of bloodwork and brain and cervical mri. I get results back on Tuesday 3/26.
I know some of the advice is wait the hell until tuesday but I am just so worried. I read the sticky on weakness versus fatigue and I was thinking after reading that I have fatigue but I am losing my ability to walk. However I am unable to walk on my right heel. I have measured my quads and they have not shrunk any since late December. Concerned about the feeling of weakness in my hands but so far I have not dropped anything, etc.
Thanks in advance for any comments.