A lot of doubts and fears of ALS

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A lot of doubts and fears of ALS

Postby Felipe on August 9th, 2014, 11:21 am

Hello everyone,

My name is Felipe and I'm from Argentina and I'm 45.This is my story
Last November I started having a feeling of numbness and certain stiffness in my legs while walking. It came and went,sometimes it was in my right leg and sometimes inthe left one. I went to the GP and she prescribed me a mutivitamin supplement. Some weeks later I started having fasciculations, first in my calves, then in different parts of my legs and then in my arms, shoulders,... I was very worried so I went to the neurologist. He did an extensive exam and asked me a lot of questions and told me that apart from the fasciculations I didn't have any other worrying symtomps but he asked for an EMG,a MRI and blood tests. Everething was ok and he prescibed me magnesium and told me to come back in 7 months because he needed to see my evolution after that time to give a diagnosis
Since then, nothing has changed. I still have fasciculations every day, mainly in my legs and feet but also in other parts of my body (arms,shoulders, back buttocks,face ...). Sometimes they are really strong and I can see how they make my thumb or big toe to move. Today my lower lip started twitching. The feeling of numbness in my legs didn't go and now I sometimes feel stiffness in my arms. If I workout, it gets worse. I have been reading about fasciculations and ALs on the internet and I'm really worried.

A second EMG will be necessary to rule out ALS?
Could I have bfs?

Thank you very much
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Re: A lot of doubts and fears of ALS

Postby Felipe on August 9th, 2014, 11:27 am

Six months have passed since my first vist to the Neurologist
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Re: A lot of doubts and fears of ALS

Postby Felipe on August 9th, 2014, 11:47 am

No weakness or atrophy
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Re: A lot of doubts and fears of ALS

Postby Yuliasir on August 9th, 2014, 1:02 pm

then probably no ALS or other MND
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Re: A lot of doubts and fears of ALS

Postby leaflea on August 9th, 2014, 4:21 pm

Felipe, I understand your fear!! Mine started in October, things have changed but not necessarily better, but still no weakness or atrophy so I think I am okay, too. If you do go back for an evaluation please let us know what they say.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: A lot of doubts and fears of ALS

Postby Felipe on August 9th, 2014, 7:48 pm

I will. Thank you very much!!!!
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Re: A lot of doubts and fears of ALS

Postby Felipe on August 9th, 2014, 7:53 pm

Since October! Have you been to a neurologist? What did they tell you?
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Re: A lot of doubts and fears of ALS

Postby leaflea on August 10th, 2014, 8:38 pm

Felipe, I had already had an EMG one month before (on Dec 8th) and saw the neuro on January 8th. I saw a very experienced nueromuscular specialist with very much experience, reasearch, and leadership in ALS and I know I can trust his opinion. He was perplexed by my whole situation, he does not understand it, but he knows it is not ALS. He was not surprised to learn I have great anxiety about it "yes, of course" and some general health anxiety. He gave me a neuro exam and it was normal, I showed him my areas of "atrophy" which I know for certain my wrists and hands have changed in appearance and are much more "skinny" He looked and examined them very closely and said "there is no atrophy there." He knows what to look for. He told me there may be a seizure medication that could help. He called it "fasiculations" but did not call them "benign" and I wish he had. But, he told me to come back to see him only if something changes. Truthfully, many things have changed since then, but I have not gone back mainly because I started seeing a therapist and he has forbidden me to go back for at least one year and I agreed. ALS is not a disease that is better to "catch early" like cancer or something. So I agreed and it has been good or I am sure I would have run back to him many times. I have many changes I could list (see my post at 8 months), but no true weakness and no atrophy! I do get cramps, twitches and all kinds of crazy things, but no weakness and no atrophy. You only need ONE EMG. Read some of the "stickies" on this board. An EMG would show something if you are twitching and it is related to ALS. The only ones when it does not show is if someone has the UPPER neuron signs before twitching. Twitching is a LOWER motor neuron sign, and if it were not benign, the EMG would tell. So, your EMG is good and one and only one EMG is sufficient for anyone on this board who started this whole mess with the dastardly twitching. I was 46 when this started.
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Re: A lot of doubts and fears of ALS

Postby Felipe on August 11th, 2014, 5:39 pm

Thank you very much leaflea for taking the time to respond. Your words really help me and give me a lot of encouragement
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Re: A lot of doubts and fears of ALS

Postby Felipe on August 19th, 2014, 11:42 am

Hello everyone again,

Today I had the results of my second EMG. It says:

'...signs of active/intense (it is 'aguda' in Spanish and I don't know how to translate it)) denervation in the digital common right extender muscle.It is also obseved spontaneous activity at rest in the form of positives and fibrillations in the same muscle...'. The rest of the parameters are normal.

I won't see the neurologist until 8th September and I am really low and worried about denervation and fibrillations
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Re: A lot of doubts and fears of ALS

Postby mwagner on August 19th, 2014, 5:02 pm

Felipe,

I know you're scared, and I'm so sorry you have to wait so long for your results.

But, any chance you could have something like carpal tunnel syndrome?

Mitra
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Re: A lot of doubts and fears of ALS

Postby Felipe on August 19th, 2014, 6:50 pm

mwagner,

Thank you very much for your support. I don't have any symptoms of carpal tunnel syndrome. In fact, fasciculations are the only symtomp I have had. I've never had weakness or atrhophy. After having my first EMG clean seven months ago, I wanted to believe that the second one would be the same.
My only hope today is that devervation and fibrillations appear only in one muscle and the rest of the measures are ok. Do you(or anyone) know if it could be a good sign?

The EMG also shows signs of mild chronic bilateral cervical radiculopathy at C4-C5-C6-C7 but I don't relate it to denervation
Last edited by Felipe on August 19th, 2014, 7:12 pm, edited 1 time in total.
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Re: A lot of doubts and fears of ALS

Postby Felipe on August 19th, 2014, 6:53 pm

I meant that it wasn't related to denervation in the EMG. Sorry for my English
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Re: A lot of doubts and fears of ALS

Postby mwagner on August 19th, 2014, 10:40 pm

Unfortunately, I really don't know, but I believe that carpal tunnel can show the same type of things on an EMG... Try to hang in there, and your neuro should better explain the results. Have you thought about calling him/her to ask?
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Re: A lot of doubts and fears of ALS

Postby mwagner on August 19th, 2014, 10:52 pm

You need to take a look at this: http://www.drcampion.com/denervation.htm

(I use Dr. Google - trying not to do it for myself, but was curious about this).

As this term indicates part or all of a muscle has lost it’s nerve supply. In fact only in severe trauma does total denervation occur, and the more common scenario is the loss of a small percentage of the hundreds of nerve fibers supplying a muscle. (see MOTOR UNITS). This occurs for example when a bulging disc presses on the nerve root – radiculopathy – causing pain from the compression of the sensory fibers and weakness-sometimes imperceptible to the patient – in the limb.

This sounds like you. Especially imperceptible to the patient...

I hope this helps a little not to worry too much.
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Re: A lot of doubts and fears of ALS

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