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Faith_7

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May I start of by saying how incredible you all are who support & give advice to each other even though you are all going through an extremely challengeable time. I pray that they find a cure sooner than later as ALS is such a devastating disease to have. May you all who have been diagnosed grow stronger mentally by the day.

My name is Faith and I am a 29yr old female from Australia. I was hesitant in joining this forum as I didn't want my anxiety levels to increase as I am quite vulnerable at the moment. I feel as though I had no choice given that my symptoms are swaying towards ALS.

It all began October 2011 when my balance felt a little all over the place, especially a weakness in my left leg. By July 2012 I developed an increase in salivation & felt wet on the corners of my mouth - I also felt that my speech start slurring even though others informed me that I sounded fine. September 2012 my left arm started feeling clumsy & I kept dropping things & couldn't grip properly. Was referred to a neuro in October 2012 - she stated that excess salivation could be from my reflux & that my neuro exam was unremarkable. Had an MRI brain - all normal.

I tried to get on with my life despite my symptoms however I started to notice other issues. My left arm shakes & gets easily tired after holding a kettle or anything where there is weight involved. It feels clumsy & I cant use it like I use to. This arm is much thinner than my right arm - and the neuro agrees. I have pain in my left leg, especially calf & feel exhausted & weak in the legs & arms after doing minor activities. My left calf is also thinner than my right...I believe I have atrophy.

Muscle twitching started Jan 2013 - in my left foot & left calf. Feels like a tickle & looks like worms when you look at it. I also walk a little funny now, feel as though I need to lift my left leg up more when I walk. I seeked a 2nd opinion 2wks ago as advised by my referring doctor. This neuro is a neurophysiologist who also has diagnosed people with ALS. Who told me he can see the muscle twitching & does agree that my left side is a little thinner than my right dominant side. He peformed an EMG & NCS which was negative.

He ordered a heap of bloods & an MRI of my lumbar. So far he states that due to my EMG being normal he doesn't think it's ALS. He thinks I may have neuromyotonia which can show symptoms like ALS.

I'm not asking for a diagnosis on-line but just some advise as to what you think. This has put a stop on my life as these symptoms are terrifying me. I think if I didn't have the atrophy I would be more at peace however that's not the case. Watching my body deteriorate like this is scary. I'm suppose to be getting engaged soon but I'm not sure that's going to happen if my prognoses isn't good.

Your thoughts & advise would be much appreciated.

Thank you.
 
Neuromyotonia is possible, but it may just be BFS, it's little brother disease. ALS shows up on EMG's and doesn't behave in the manner you described. Stop worrying about it and follow through with your doc. In the meantime, learn how to be functional and happy with where you are right now, that'll take you very far in any situation.
 
Why do I have muscle wasting in areas that I am weak in? I know my body quite well and can tell you that my left calf & left arm were always strangely a tad bigger than my dominant and now its the other way around.

Neuromyotonia doesn't cause atrophy. I do understand that something should have shown up in my EMG if it were ALS? Given that I have muscle cramps, twitching, weakness & muscle wasting. I think the neuro was a little surprised that the EMG was normal.

In the mean time I will try and await for the results of my blood test for neuromyotonia, which takes 3wks to get. My neuro doesn't think I have BFS as I have symptoms other than fasics.

Do I need repeated EMG any time soon?

Thank you for your positive words tokahfang - I really appreciate it.

If anyone else has any further advise please share.

Faith
 
Unless I misread your original post, you wrote about "couldn't grip properly" and then "neuro exam was unremarkable". Then you talk about shakes, feeling tired and exhausted in that limb. That reads like perceived weakness, not clinical. (Perceived weakness and fatigue aren't great and fun symptoms to have, they just aren't what we mean when we say weak in MND land.) Am I wrong, did your neuro call out a limb as weak, and did he give you numbers for it's strength?

It matters, because if left arm and leg are still at full clinical strength, then the shrinking of them you are experiencing isn't MND-style atrophy, either.

That said, BFS is a bigger thing than just the fasics. It isn't a very standardized term yet, though, and docs milege does vary! I interact regularly with a large community of BFSers, and they experience a more minor version of just about every neuro symptom I've ever heard of: tremors, fatigue, vision abnormalities, you name it. The difference is that for them these aren't dangerous, and generally get better over time, they aren't signs of underlying damage. They never progress to become very serious.

Let your neuro work it out, but I truly don't think you should waste your time worrying about ALS. If your symptoms continue to worsen, you are going to wish you spent this time on something fun.
 
An example of the weakness that I experience is that I can no longer fill up a kettle and lift it up without shaking and wanting to put it down. When the neuro did his examination (push/pull tug) that is only testing my resistant strength, which I did not feel that I was that strong on the left side during the examination.

I can't stand on my left foot without wanting to fall over, where as I'm fine on my right.

The cramps in my left calf have increased which has made it impossible to sleep properly. Also experiencing more fasics in other muscles now - still contained to my left region.

I don't want to pester you all with questions nor am I on here to cause humiliation. I honestly believe that I have the beginning of a motor neuron disorder.
 
I've been told by my neurologist that I need to wait & see if my symptoms get worse. I was told that my symptoms do mimic the start of MND. I'm in a bit of shock at the moment as my EMG was clean 3wks ago. Could someone give me some advice as to how I should tackle this? I'm quite overwhelmed & afraid as I'm suppose to get engaged soon.

Faith
 
I am not a dr but I think you should listen to him/her. Your anxiety is making the symp toms worse. Stress and fear can make you really sick.

I know when I am stressed my symp toms are 10 times worse. Keep a journal of your symp toms when they start, what you were doing, how long they last so when you go to the dr again you can give him a time line and more detail than trying to recall from memory.

If I were you I would concentrate on my up coming engagement and planning a wedding that is time well spent. I wish you peace.
 
Thank you very much for your advise. Keeping a journal of my symptoms is a good idea until I see the neuro next. I guess I was hoping to hear that I didn't need to go back for a review and that ALS was definitely ruled out due to a clean EMG. But I know that my symptoms are not getting any better & that must account for some illness.

At the age of 29 you don't like hearing these sort of things and find it difficult to accept a possible diagnosis.

Do you think my symptoms mimic ALS?

Hope you are keeping well with yourself Vicki.

Faith
 
You were told it was bfs and more than likely thats what is going on but you are stressing and that will make things worse but if things change then go back to the dr. A clean emg is a good thing and be happy. I wish you peace.
 
Please go to aboutBFS.com Join that forum and ask them these questions. They even have a chat room there
 
Thank you for your replies, however I have not been diagnosed with bfs. My symptoms consist of muscle weakness, left arm & calf are showing signs of muscle wasting, excessive salivation - (making it difficult to speak clearly even though others state that I sound fine), muscle cramps and fasics.
 
Still, go check out the BFS site. They have a lot of symptoms you have, and it may give you peace of mind.
 
Hello

There is some good information around on various disease and syndrome processes. Neuromyotonia does have treatments--though as I understand it there are abnormalities in the EMG normally--which you apparently don't have so I'm not sure why the doctor mentioned it to you as a diagnosis.

Three things fall under the umbrella of hyperactivity such as is seen in neuromyotonia. BFS and benign cramps are the other two.

I think you need to relax and simply wait for a diagnosis. Without EMG changes, I think you'll find that you are fine.

Many things mimic early ALS symptoms--but with a clean EMG I doubt you need to consider ALS at this point. Slurred speech noticed only by you is not clinically significant. In ALS, the slurred speech is normally noted by others--and ALS doesn't cause excess saliva. The excess saliva seen in ALS is caused by the person with the disease being unable to swallow their saliva--not because they produce more.

I'd suggest continuing on with your doctor--and also read the sticky posts here. Really--nothing in your post shouts ALS to me.. Good luck to you.
 
Thank you all for your advise and kind words. I have also read thr sticky posts which are very helpful. Blood test for neuromyotonia came back negative. So now will need to wait and see if my symptoms progress & will need to reviewed again by the neuro and possible 2nd EMG

In regards to the hyper salivation that I'm experiencing - I tend to drool a little on the corner of my mouth and need to remind myself to swallow...could this be due to muscle weakness?
 
Hi all,

Since my last post, my symptoms have somewhat progressed. The fasics are now also in my right calf & foot. I've been trying to ignore them but that tickle feeling keeps reminding me. My left arm clumsiness & weakness is still the same - have noticed that my wrist is getting smaller as my watch is very loose on me now. The cramps in my left calf are very bothersome.

May I ask is stiffening feeling in legs a symptoms of ALS? I find that even small walks or doing chores around the house makes my legs ache! I don't know what else to do...this is terrifying me & my family. My last EMG was Jan 2013 - do I need to repeat this? And should I be going back to my neuro any time soon?

I keep reading all posts on this forum related to ALS symptoms - I feel that I fit the beginning of this disease. I'm only 29yrs old so this has put a stop to my life.

Any advise would be much appreciated.

Faith.
 
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