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Yvme

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Hello dear all! I just want to make an update. It has been a bit more than 3 years since my symptoms started. From the begining i have body widespread twitching, i have weird sensations on moj tongue, it started to apear assymetryc few months ater twitching happend. All my problems from day one are on one side-my dominant side -right calf muscle, small muscles of right foot, thenar muscle in right hand. My reflexes are all normal -bilaterally. I have been to numerous neuromuscular specialists that have done emg on both my hands and legs (4 EMGs till today) NCS are always appearing great, EMGs have found some "unconserning" findings only in my feet muscles :extensor digitorum brevis dex at sin and flexor hallucis brevis dex at sin both have slightly reduced recruitment and big muaps (9 mV) that had not significantly changed those 3 years appart and are to my surprise billatheral from first year till now (yesterday I had new EMG and nothing has changed) and she said that it points out to radiculopathy at L5-S1. She left the needle in muscles for a minute and norhing appearef when muscles were still. neurologist did see my calf muscle and she mesured the difference between right and left about 0.50 cm...she saw other assymetric changes and didnt have a comment on it, since I didnt loose strenght in any muscles mentioned.
What do you all think? The twitching is still making me nuts, and Im still scared that it could be MND...do you think that i could do aything else to try and find the cause of my problems?
P.S. Sorry for my spelling! Its 3 AM in my country!
I am 29 y old female, planning pregnancy and scared it could enhance my symptoms
 

KimT

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Sounds like benign fasiculations. You have been cleared of ALS. Thanks for reporting back.
 

Yvme

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I could only hope it is BFS, because twitching is here 24/7even around my spine!;my right foot, right calf muscles, right forearm muscles, right hand and even that side of my tongue are smaller and continue to shrink. I show mild dysphagia only on my right side. I'm scared thatall of it will eventually become visible even on emg. I have strenght still but my muscles on right side get easily sore from using it. I know my reflexes are all normal,but now i started to panick about PMA..does it progress slower than ALS?

Can enyone answer me: Is it posible to still be fully working with some atrophy 3 years after symptom onset?
Is it common to have problem only on one side of throat and tongue?
It concernes me the most, about EMG, is that if fascis and fibrilation pot. could have been missed? Is it enough to leave needle for onli half minut-minute? I didnt twitch at that muscle at a moment...
What else it can be when the NCS are great, but EMG changes towards nerve problems (since obviously there is no chance to ever blame some kind of neuropathy-my neurologist said my NCS are remarkable.
Sorry for too many questions, bud the fear is still consuming me 3years after it all started!
 

Atsugi

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You have been thoroughly cleared of ALS and MND.

If you cannot stop thinking about ALS/MND then you have a problem with thinking.

Stay away from all MND websites. Stay away from terminal disease websites. Believe your doctors.
 

Yvme

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A few questions for PALS

Dear all,
Sorry for bothering you, I'm in a really messy situation. I've been to my neurologist last week and she said that I don't have ALS. My emg is suggestive of radiculopathy L5-S1. I have normal reflexes.Since starting of symptoms i had widespread twitching, and from the first month I experienced slight atrophy in right tenar muscle, right side of tongue, right calf muscle, and right foot and it seems that iz is progressing reather slowly-it has never stopped!!I need you to anseer me about your experience: if i had only LMN disease, like PMA, would i have significant atrophy by now? Does muscles , once they start to atrophy-atrophy quickly? Did anyone with bulbar problems had atroohy and difficult swalowing only on one side? (I noticed that food is always swallowed with left side of my throat. Please write me your experience, i have all of this for 3 years now, and my life is hell from worrying.
I wish this disease never ever developed in this world. ��
I am constantly accusing myself of provoking this, because teo months before all this symptoms appeared, I took herbal liver cleansening, and epsom salt gut cleansening.... :(

Please don't be mad at me :(
 

ShiftKicker

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Mod note: Merged threads. Yvme, please continue posting on this thread as it makes it easier for forum members to follow your posting history and make more informed answers.
 

Yvme

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Few questions for diagnosed people

Dear all, excuse me for bothering you, i have a fee questions regarding symptoms I am now having for 3 years which have slightly progressed.

For me symptoms started in my right hand, right foot/leg and right side of tongue in almost all at the same time. I noticed bodywide twitching, and atrophy in those places all on the right side.

I have been to 3 neurologist, neuromuscular neurologist eho had examine my body and did emng. They didn't test my bulbar region nor my thoracic muscles, only legs and arms (including muscles i have slight atrophy) neurologist did see what i'm pointing to as atrophy, but after emng dismissed it as normal phisiologic asymmetry. I still have nirmal neuro exam and normal reflexes. My emng suggest that i have L5/S1 radiculopathy frim the begining with only cronic changes, but that doesnt explain my bulbar symptoms.
I can still walk, do everything with my hands, and can eat...

I have a few questions:

1. Did anyone had bulbar and limbs problems from start?
2. Does bulbar problems start as onesided atrophy?
3. How long does needle have to be in relaxed muscle to detect fasciculation/fibrillation?
4. I dont have slurred speech, but recently am noticing problems with swallowing on my right side, did anyone had similar problem?
5. I'm concerned that some people here weren't diagnosed longer than I'm into this symptoms, can you tell my why you think that you wasnt diagnosed earlier?
6. I live in Croatia and we dont have ALS clinic, I'm thinking of going to London or Amsterdam/Utrecht. Do you think according to my symptoms I could finally have some answers?
 

ShiftKicker

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Mod note: Please continue posting on this thread. Please do not open another.
 

Yvme

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Please someone! Answer me, I can't live like this anymore
 

Angiegal

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Yvme
I'm concerned about you. You've been told it'snot ALS. Why won't you listen to your doctor?
At this point, (if it were me) i'd be getting to a doc who works with the mind. 3 years? You said yourself you can walk, talk, eat. Get off the Internet. It's NOT helping you at all.
 

Yvme

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Please, Atsugi, don't be so rude to me. I found here many people that had problems many years before getting diagnosed. I know that 3 years is a lot, but I'm just scared becouse of my problem with swallowing on my right side. (Nobody eve tester my bulbar region, I'm tryning to convince myself that since I have a problem with hand and leg and that was tester, that iteould be the same with chin). On this site there is really some scary stuff about people having clean emg, symptoms for years( like 6-7) before diagnosis...so it makes me really nervous. Sorry for bothering you, I just cant help myself.
 

ShiftKicker

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Yvme-

Please understand that when you post, and then insist that people answer you immediately you are not taking into account that people here have a disease that is terminal that can cause difficulties with scrolling and typing. You must also understand that the members with ALS come here for support and are not "on tap" to help those with concerns about their own health. You are not owed an answer. Nor are you owed instant reply. The people here are experienced with ALS. They are not medical professionals. While it may be difficult to find answers in your own medical system, the people here do not owe you. You have been answered multiple times by volunteers and you have not been satisfied. You must seek proper and in-person medical attention. The people here should not be held responsible for your wellness.
 

Atsugi

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Yvme, I am not being rude. I am seriously advising you.

Both your doctors and the people here with experience are telling you that you don't have ALS/MND.

But your obsession and pleading and "can't live like this" are serious cries for mental health assistance.
 
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