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HG in Houston

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Learn about ALS
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texas
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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 understand your fears. Suggest you cut and paste your EMG results on Wright visitor page. He's our EMG expert and may have the chance to look at the results and explain them to you in layman terms.

Good luck on the 26. No matter what, we are here for you. Do let us know how it goes for you.
 
Saw the neurologist yesterday and he did a full emg very thorough emg. He found issues primarily in my right leg and only one muscle in my right leg. To complicate matters is that most of my lumbar nerve issues were on the right side so that could be causing some of the issues he found. However he seems to believe it some type of MND because of the twitching and atropy. All other limbs were still strong.

They are going to do a muscle biopsy of my right bicep a week from Friday and everyone pray it is clear which mean for now I am only affected in one area and not 2.

It was a very very emotional office visit. He did prescribe some anxiety medicine.

Next step is to goto Dr. Simpson at Methodist who is the ALS expert and have them repeat to make sure they confirm what he has found.

Prayers to everyone. This is a very difficult experience to go through. I love my wife and mother for the support they have given me.
 
Hey HG

I know you're likely very worried right now. Please keep in mind that severe lumbar issues can be bad enough to cause EMG changes similar to what may be seen in ALS early on. It can also cause foot drop if the right spinal nerves are involved. I'd take comfort that at this point, it appears to only be one muscle affected, if I am reading what you said correctly.

In ALS, the nerves are irrevovokably damaged, thus muscles atrophy. BUT, anything that causes nerves to be damaged, thus, not feeding the muscles, can cause atrophy, including severely pinched nerves. Honest.

All other causes must be ruled out before ALS can be diagnosed. At this point, I think you can still be cautiously optimistic that you have spinal issues causing your problems.

In either case, we will be here if you need us! I believe I would want to be assessed by a neurosurgeon as well. That was my second stop when I presented with severe hand weakness and atrophy, because my cervical spine MRI showed several ruptured discs. It was only AFTER the spine specialist said that it was not my c-spine that I went to a neuromuscular specialist.

We have a saying arounfpd here. Zaphoon said it first, but I adopted it and put it in my signature. IT CAN BE ALS ONLY WHEN IT CAN'T BE ANYTHING ELSE. You're not there yet! It can still be something else!

My hand has severe atrophy and had fascis, too...and they are still NOT sure it's ALS. Keep heart! We will be praying for a positive outcome for you. The neurosurgeon told me he thought I had ALS, too. But, atrophy in one muscle isn't guaranteed ALS.
 
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