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April2015

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Lost a loved one
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Crazy land
First off let me say this may sound crazy to you but I wanted to try to get the opinions of people who had first-hand experience with this…
I am 33 my symptoms began back in September with alternating tingling and heavy feeling s in my arms. One day it would be my left bothering me then a few days later it wound be my right. This was followed up with mild body wide twitching and constant twitching in legs. My first concern was ALS. My grandmother was diagnosed with bulbar in 2012 and passed in April of 2013. I didn’t really know much about the disease until recently when I started reading about it on Dr. Google. (I know not the best thing to do) My grandmother was an only child and she had three children. My aunt passed from breast cancer in her mid 40’s, my mom is almost 60 and her other sister is almost 50, no ALS issues to date there. I know the family history on my grandmother’s maternal side but the paternal side is kind of incomplete. Her father passed from a heart attack in his late 50’s and he had a sister who lived into her 70’s and not sure of cause of death. My grandmother didn’t speak on them much and they lived in another state.
My PCP ordered an MRI and an EMG three weeks into symptoms the EMG was on both arms where I was having symptoms at the time and it was normal, MRI was normal as well. Symptoms persisted for about 10 weeks and then went away completely, I thought yay I’m cured. Fast forward a month and my symptoms came back. Twitching mainly in legs and tingling through arms and back. I saw a neuro back in October who totally blew me off (and maybe rightfully so) told me to keep taking my Xanax and ordered some bloodwork which has all come back normal. I recently saw another neuro who performed another MRI on the brain because he suspected MS but it was normal. He has done two clinical evals and scheduled another EMG of lower extremities just for my peace of mind but it isn’t until the end of March The neuro I recently saw has over 30 years’ experience and he doesn’t seem concerned. He actually told me at my first apt “you don’t have ALS” and that this is an obsession. When the twitching won’t go away and you have yourself convinced you are weak in the hands it makes it hard to believe. The logical part of my brain tells me that the alternating nature of this followed by the clean EMG after symptoms presented themselves and it’s been 5 months and I still pass clinical neuro exams points away from anything serious. The majority of my symptoms have been on the left side of my body (most of the twitching and “weak” feeling) accompanied with minor aches and pains and some days nothing at all. I do have HSV 2 and I have read that it can cause some of these symptoms. My current presenting symptoms are twitching in legs, feet, and hands occasionally and a sense or feeling of weakness in left hand. It is very hard to describe what it is like.
With regard to FALS I have heard that it usually begins in the lower extremities and usually at a younger age. (My grandma was 75 when diagnosed with bulbar) I am just very concerned that there is something on her paternal side that we don’t know about. My mom and husband both think I am crazy and my mom swears that if there was something that we would have known about it. I have two children and I am extremely anxious about my health. I have been debating on whether to post here or not for some time but just never have. I really fell crazy for doing it actually. I do promise I will go away if someone can please just offer some opinions on my situation, does it sound anything like ALS? If my grandmother did have a genetic form of ALS would it typically show as bulbar in other generations or could it present as limb? I’m not looking for a diagnosis just some opinions and please don’t yell at me. It bothers me that when my grandmother was diagnosed they never looked for a second opinion. I know the she probably did actually have bulbar but they never pursued any further than the one neuro. Again I am sorry to bother you all with the same old stuff you hear all the time…I really hate that this ended up being so long!
 
No does not sound like ALS. You have normal exams and normal EMGs. You have no good reason to suspect FALS with one relative who was 75 at onset. You are feeling not failing ( refer back to sticky please). You are right that HSV2 may be playing into your symptoms. Your neurologist is trying to reassure you by doing the EMG again. I hope that will allow you to move on. He has already told you no ALS will you believe him if your EMG is ok again
 
Thank you for responding. It broke my heart to watch my grandmother fight it. I hate it for the one's like you Nikki that have to battle it through generations. I think my anxiety is on overload about it because I did have a family member with it. It's a very scary disease....
 
April,
Please believe your doctor's that you don't have ALS. But, I do understand your initial concerns about getting it. I had a issue with my shoulder this year and never had any issues before with any limbs or muscles. I almost jumped on the band wagon to thinking I had ALS. I think when we have a loved one who has battled a serious disease that we get worked up about any little changes to our bodies. It's hard not too. But, I truly feel that your fear is unnecessary at this time April. Hope you can get some help with your anxiety about it. You are going to be just fine. Please log off here now because you don't have ALS and please stay away from Dr. Google. Best of luck to you, Kim
 
April, none of your symptoms sound like the onset of ALS. Symptoms don't come and go as yours did, ALS is a progressive disease. Twitching can be anything, especially stress, and if they are all over the place as yours are, that also is not ALS. Your EMG was clean which also means no ALS. And just because your grandmother had it does not mean it is in the family. 90% of all ALS cases are random or sporadic. Think about it.....90% of all the sporadic ALS patients in the world do not have it in their family. Also, you talk about "weak" feelings and tingling...again not ALS. There is no "feeling" in ALS, only "failing". Rest assured, you don't have ALS. No need to seek another neurologist appointment, they would probably blow you off again. Relax and enjoy life! Good luck!
 
The logical part of my brain knows all of this is true and I do ok for a little while then I nitice i i drop things and I find myself asking did you drop that because you are clumsy or did it just fall from your hand. I do all the crazy strength tests and I constantly walk around snapping my fingers to convince myself I'm fine. Anxiety is a very real sickness and it can consume you.
 
Very true. And since you are anxious you need to get help for that. You apparently already have neuro appointments scheduled. Occupy yourself in the meantime by getting help for anxiety. I do not think for an instant that your neuro exams will bring anything but good news but the anxiety will persist if you do not address it. Stop reading about ALS. Preferably leave the computer. You live in Florida you can go outside ( lucky you I live in snowland). If you can't tear yourself away from the computer try a health anxiety forum. But it is unhealthy for you to hang out here. Really. Good luck
 
I hate to be redundant but indulge me for a moment please...I have feel like I have to concentrate on not dropping things from my left hand. I'm not sure if that's how this this works or if it's more of a "you do drop things" I know in the later stages that would be the case but if this was early onset would that be possible to have to concentrate on not failing. I have been feeling like this for months now that I have forgotten what normal felt like so this may actually be normal. Sorry to be such a pain...

Sorry for my long essay in my original post...I have a tendency to be long winded!
 
April, I routinely drop things from my R hand, always have, and I was a CALS. But I used to have classes upstairs from the coffee machine and learned to climb stairs, through concentration, w/o spilling a drop.

HSV can certainly be responsible for sx such as tingling. I would also look at your mattress/pillow/sleeping position and where your hands end up. As others have noted, you haven't presented anything worth pursuing apart from anxiety. So I will give you my patent-pending advice: take a nature walk, get a massage or a swim, bring some cheer to a nursing home where the sick people are and celebrate your health. Sorry about your grandmother.
 
Update!

I just wanted to post an update from a post a few weeks ago

To the ones who were so kind to respond to me I wanted to update you on my condition. I was concerned about ALS because my grandmother passed from it and I was having some concerning symptoms. I had my follow up EMG today and the neuro said no ALS. Not sure of the cause of my symptoms, might not ever know but for now he says I'm fine so I'll go with that. Thank you for being so kind to respond to me. I am doing my best to get my anxiety under control.
 
Thanks for letting us know. Great news!
 
Great news! Thanks for letting us know April!
 
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