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MLP123

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Sorry to repost the SAME thing..but I am new at posting and someone told me my post belonged here. I am just hoping to get some responses from people who may know alot about ALS or people with similar symptoms....I am praying someone can help me with some advice! Please respond. My symptoms started 5 years ago with a tongue twitch I could feel and scalloped tongue..upon exam I do have what appears to be some atrophy in my hands and ankles. I also had bodywide twitches. My tongue stopped so I just moved on..as 3 docs told me I was okay. So about 2 months ago while 9 months pregnant my tongue started again. I also have really bad teeth marks on my tongue and when I apply pressure to my tongue it spasms EVERYWHERE and I cant feel it. I have VERY brisk reflexes in both legs and a weird crawly sensation in both feel and up one leg at all times. I also have a constant fasiculation I cant feel on my foot that never stops. I get a heavy feeling very often in my left leg and arm. I twitch EVERYWHERE everyday it feels like popcorn under my skin. I also have where they tap your chin and your face twitches..My lips,face,legs,arms you name it its constant...Heres the thing I just had an EMG on both legs,arms,and one under my chin 2 weeks ago and my neuro says despite my symptoms its not ALS? I have been biting my mouth,and it feels like I chew and chew when I eat. PLEASE someone help as I am confused and dont know what to do..I have a six week old baby I have to take care of and my depression over this is taking over any advice would be great!
Again sorry for the post in the wrong spot before!
 

goolia75

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Hi MLP,
I don't have ALS, but I did visit an ALS clinic after being sent there for symptoms and have learned a bit about it.

I can tell you that after 5 years of symptoms, you probably do not have ALS. By now you would be quite disabled if you did have a motor neuron disease. Body twitches are normal. All muscle twitches can be totally normal. I've had a crazy amount of body wide twitches (including the tongue) and muscle weakness in my arms. Twitches can happen for so many reasons and most of the time they are benign reasons. I have literally hundreds of twitches every day, mostly in my arms. I usually always feel one going off somewhere in my body most of the time. I've come to actually kind of enjoy the way they feel now. Please try to just ignore them. Let them come and let them go, don't put much thought into the twitches.

Having a scalloped tongue is completely normal. I've had teeth marks along the side of my tongue for years. It just means your tongue is a bit bigger and pushes against your teeth. It doesn't mean anything is wrong and it doesn't mean you have Bulbar ALS. The doctor at the ALS clinic said I had very brisk reflexes and a one sided positive Hoffman's test in my hand, yet I do NOT have ALS. I've had creepy crawly sensations all over the place, rhythmic buzzing and vibrations in my feet, stomach, and groin, tingling in my fingers and hand, and many other neurological symptoms. I have fatigue and weakness in my arms and have felt it in my legs too.

I've had/have all these symptoms yet the clinic ruled out ALS. I've just come to the conclusion that I probably have BFS. And in my opinion, anxiety makes BFS worse. It sounds like that could be a possibility for you too. Try looking up About B F S . com and read through those posts. It might help you out a bit. I'm sorry you are feeling so stressed, but I really think you should cross ALS off your list off possibilities. Also, you have a 6 week old baby at home, so try to enjoy him/her! Have a great day!
 

MLP123

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Thank you so much! My biggest worry is the muscle wasting in my feet and hands..I have symptoms of uppper and lower motor neurons and have been told that means ALS..I am SO stressed but trying not to worry! Thanks so much for your reply!
 

vickim

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You said you were told by 3 or4 drs it is not als. You are letting these fears take over your life. You have been posting since September and everyone has told you the same thing.

I am not a dr but I agree with goolia that it is most likely bfs, which is what I said yesterday in your posts. Anxiety is only going to make it worse. From what I can see is you have 2 choices, go to the dr for some anxiety meds to help you overcome this fear or keep going to different drs seeking the answer you want. I hate to sound harsh but you have a wonderful baby and that should be your focus. I don't think anyone here can help you find the answers you are seeking. I truly wish you peace.
 

Bliz

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I have bodywide twitching (tongue included) for nearly 7 years.

You said that 3 neuros had told you it was not ALS, yet you say you have UMN and LMN signs - who told you that then?

After 5 years, it would be incredibly rare to have ALS after initial LMN presentation.

Consider other options, from lyme, CIDP to celiac disease which has been proven to cause fasciculations and a wide range of other symptoms even if you have no other signs of it.
 

MLP123

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My regular doctor said that my symptoms would be considered both upper and lower..twitches,atrophy,and very brisk reflexes in the limbs with atrophy..yet I have a clean EMG and NCS but my symptoms continue to worsen. My neuro didnt not look at my tongue,just did an EMG under my chin that did show fasiculations,and all my other twitches showed up too,but no clinical weakness,or nerve damage. Just confused because I KNOW there is something going on,I wouldnt be so worried besides my bulbar issues,I can apply any pressure to my tongue and it wiggles and spasms all up and down,yet I cant feel those,I do however have a constant twitch on the tip I can see and feel. My chewing has slowed down alot,and its very scalloped..VERY which all those symptoms together seem like atrophy,given that I do have unexplained atrophy in my feet and hands...just really scared and very confused!
 

MLP123

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2 reg doctors..1 neuro
 

vickim

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I doubt it is als because this has been going on for 5 years, you would not have just given birth. You would not be eating, walking, talking. I don't doubt you have something going on and only a dr or drs can find out. We are not drs. Several people have given advice and opinions, that is all we can do.
 
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