Early onset

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Stella27

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Hi, I'm seeking early onset information. I am awaiting tests for ALS and my anxiety level is over the top. I suffered from trigeminal neuralgia in early August. I'm on gabapentin and still waiting on my MRI to find the cause of it. Since then I began with twitching in my calves and back of thighs. It's almost constant unless I'm walking. I have not experienced any muscle weakness to my knowledge. The fact my neurologist decided to rule out ALS threw me for a loop as I was not even going in that direction. Now I think there's no way it isn't this. My anxiety level is over the top. Does it seem like a big jump to test for this or are my symptoms something that people here started out with? Is twitching enough without muscle weakness? Was weakness a part of early unset symptoms for most?
 

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Please read here for our position on twitching. Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

my entire family had weakness as a first symptom If you have a normal neurological exam yes it seems like quite a leap. I suspect they are only being cautious due to your age. I would guess since the neurologist wants to rule out als they are doing an emg? That should tell the tale
 

Stella27

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Yes, I am having an emg. I originally was referred to the neurologist for trigeminal neuralgia which with this jump to eliminating ALS caught me so off guard and has me terrified. I did read before posting and found it very helpful. I was just wanting to know mainly is others early symptoms were only twitching. I do know it could be all anxiety but a medical professional is questioning this so of course I'm scared.
 

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Trigeminal neuralgia is more likely to occur with MS, not ALS. Did they do an MRI of your brain and spine with contrast or are they planning one? They may be trying to do a wide sweep to see if you have anything else going on besides the TN. TN can be extremely painful. I hope the Neurontin is working. I some cases, Neurontin can contribute to anxiety and is dose dependent.
 

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The sticky is our official position so reading it then asking but did others here experience differently is really an oxymoron.
Weakness is the hallmark.
I'm really sorry your doctor has raised ALS as I have a close friend who has battled TN for some years and the pain is horrible. Try and stay calm now and let them do their testing regime. If you can't get your head around it, see if you can get more information from the neurologist as to their thinking. We can't possibly second guess that since it doesn't match up.
All the very best.
 

Stella27

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I appreciate your feedback. It doesn't line up to me either and I'm considering seeing a different neurologist. I was able to have a conversation with the neurologist since my post and asked specifically what about me has triggered the need of ruling out of ALS. I told him my anxiety is over the top. He said it's because of the muscle twitching I stated I have in my calves. He confirmed my neuro exam was absolutely normal with no weakness. I'm at a loss. I think at this point my muscle twitches are because on a anxiety scale of 1 too 100 mines at a million.
 

Nikki J

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You are right that anxiety can make twitching worse. It is very reassuring that your exam is normal. I think at this point I would do the emg to put this to rest. If you no longer trust the neurologist for your care though I might seek another one after for your TN care. I don’t think I would just start over again. If you do and they laugh at the emg idea then you might be left with a tiny doubt of what if. Sorry this is happening to you
 

Stella27

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I think you're right. I need to have the emg to get past any worries and hopefully my muscle twitching will settle down after. If it turns into something by the emg I guess it's best to know now anyway. You wouldn't believe how many times a day I tell myself it's failure not feeling based on all the information here, and I have no failure, but than the anxiety monster returns. I do appreciate your advice.
 

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Completely agree with Nikki, the EMG will give you clarity and then you can decide if you are best changing doctors. You do want a neuro you trust to work through the TN. Let us know after you get the EMG.
 

Stella27

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Hi, I am scheduled for an emg but not for 8 weeks. My MRI is tomorrow. I've tried so hard to stay off the internet. The twitching in both calves is creating so much anxiety. I take care of an elderly woman who is crippled from MS, and I've spent a lot more time with her lately to keep myself busy. She is so sweet and she calms me somehow. My husband and family think I'm a little crazy right now with my worrying. I would like to know if it would be rare that this disease started in both calves at unset. I thank you for your time and I'll do my best to not bother anyone until after all my tests are completed. Just trying to stay sane.
 

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Yes it would be. And calves are the most common area for benign twitching to concentrate. Though it can be anywhere. It is kind of you to spend extra time with your MS client
 

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Very rare, and twitching really means nothing. You are doing this to yourself and you will never get the next 8 weeks back.
Give this time to living, to your family, and to your client as you are making a difference for her.
Please, don't post again until after the EMG. Posting here is not helping your mental state.
 

Stella27

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I received my MRI Report and wonder if this is something seen with anyone else's MRI with a ALS diagnosis. Maybe this is more of an MS direction? I know you are not doctors. I do not know what area of the brain is affected with this disease and having findings like this, without being able to get explanation from my neuro for nearly 2 weeks is really scaring me. The report says "there is mild atrophic changes involving both upper cerebral convexities. There are several nonspecific signal hyperintensities noted within the paraventricular and subcortical white matter of both cerebral hemispheres. Then states most compatible with Ischemic foci of microvascular occlusive diseases and alternate differential considerations include demyelinating plaques, can also be seen in context of patients with migraine headaches.
 

Nikki J

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MRIs are not usually that helpful with ALs diagnoses. Rarely there are suggestive findings but even those are not diagnostic and will require more clinical findings. However nothing on that report falls into the suggestive category. ALS is not a demyelinating disease but anyway that mri is not definite on demyelination. Given you have a normal clinical exam and ypur only symptom is twitching I wouldn’t worry about MS. I am really sorry that your doctor raised ALS and has left you hanging for an emg
 
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