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bala80

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Learn about ALS
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AUS
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Vic
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Melbourne
Hello all,

I'm a first time poster (27y, m) from Melbourne, Aus, and would appreciate any feedback. I am pretty sure I have ALS, but haven't been officially diagnosed yet. My symptoms started mid July, when I noticed a burning feeling in my toes. Over the next month this had spread all over, and I also noticed I had stopped sweating. In mid August I had an NCV, which showed "a mild demyelinating neuropathy", no EMG was done because I had no motor symptoms.
That night laying in bed, my whole body started to twitch, and the twitching has not stopped since. Since then, I haven't had a good night's sleep, I rise every hour or two or can't sleep at all. A month later (mid Sept), I had repeat NCV with EMG, the nerve conductions had returned to normal, and EMG was done on my right quad and ant. tibialis which showed "mild fasciculations with no other abnormalities". My neuro noted that due to the recovery of my NCV, I should start to recover and that the twitching was not dangerous. "It doesn't look like anything sinister" he keeps on saying. He prescibed me 0.5mg clonazepam nightly prior to this for anxiety as he saw it, and said that this would in no way interfere with the EMG. (I've been taking this on and off since to help with insomnia). It's now one month later, and the twitching is unrelenting along with muscle pain, mostly in my legs (calves, thighs, feet), and I am noticing progressive atrophy of my leg muscles (esp calves). I am convinced I have ALS, and an aggressive form of it too.
Yesterday I had an hour&half-long consult with the chief NM specialist at the hospital who performed NCV/EMG on me again. The NCVs improved further, and EMG of several muscles were normal (no fibs or PSWs), normal motor-unit potentials. Needless to say, I was totally surprised with this, and he said "we can rule out MND from this EMG", and diagnosed me with small fiber and autonomic neuropathy due to my sensory symptoms. I asked about a muscle biopsy and he said its not required. Every blood test I've had is normal, no inflammatory markers, normal CK (he has ordered others now, anti-gliadin - he thinks there is a possibility of celiac - I'm clinging onto this as there has been a reported case of celiac resembling ALS) They do not think I have ALS because of the peculiar onset and sensory involvement, and they think I am recovering from a demyelinating episode. Unfortunately I'm going the other way, each week my muscles seem to be losing more bulk, and the twitching never stops. Mind you, the twitching is less in mornings and gets more frequent throughout the day, I had the EMGs done in the morning and the neuros were aware of this and said that if I had ALS then they would see signs of denervation regardless. I mentioned a biopsy and he said it was not necessary, that I do not have ALS.
I walked out confused, not knowing what to make of it. My parents have all their trust in the docs and I can't bear to look at them when they have so much hope and say that everythings gonna be ok. Mentally, I know I'm in massive trouble, and am trying to ride it out. I see my neuro in 2 weeks again. How can I have quickly advancing symptoms like this and a clean EMG? I can't make sense of it all, and I'm guessing most of you nice folk can't either. I'm also guessing you haven't heard of a case like mine either! I have all the hallmarks of ALS clinically but no diagnosed, and I feel I should be being proactive to try to possibly heal this, but then am discouraged because this is going too fast to be stopped. Any advice would be greatly appreciated, thanks for making it through this mammoth posting.

Demis
 

Peg B

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PALS
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Flint
Dear Bali 80,

I am sorry you are so upset and that you are going through this, but it does not sound like ALS. There have been many long discussion on this forum regarding fastitulations or twitches. Please do a search at the top of this page so you can get more information on this. If the tests say no ALs, they are probably right. You say you have fast progression and the docs say no ALs, I would be relieved and as time goes you may want to check out other diseases including the celiac. It makes my friend very ill. You will hear more from this forum but for now I would try hard to calm myself if I were you. Take good Care, Peg
 

bala80

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Vic
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Thank you Peg for your reply. I'm trying to be positive, but I can physically see that my muscles are wasting away with every twitch, and I know that there are cases of ALS that progress rapidly. I think maybe my docs are in denial because they have never seen anything like this and probably never will. I also wonder whether the EMG was normal due to the clonazepam in my system, even though it wasn't a large dosage (0.5 to 1mg) the night before. I have also had frequent awakenings during the night since my symptoms started, and can't sleep for more than 1-2 hours at a time. I'm just afraid that I'll be unable to walk before they take the possibility seriously. Thanks again.
 

Jamiet

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You don't ahve ALS. IF you had that aggressive of a form, it would have shown in the EMG.

Also, ALS does not present with burning, that's sensory and you likely have the neuropathy.

YOu need to try to listen to the docs, only time will really tell.

You don't mention of other things, like, do you have the hoffmans sign, or babinski sign or do you have hyper reflexes?

Do you drop things? Can you walk, can you open a jar, can you button your shirt?
 

brooksea

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You have convinced your self you have ALS. I do not really think that is the case. I've never heard of burning being a symptom.

Fasciculations start on one muscle and work their way around your body, slowly destroying the muscle network. ( i'm no doc) These fasciculations work on the muscles and basically make them(muscles) go away.

Give yourself a break...
 

bala80

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Vic
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Melbourne
Hi there,

I can walk gingerly, can't run, mostly due to the muscle pain. The other day I did some basic squatting exercises and my muscles hurt for the next 3 days. I have significant atrophy especially in my calves, where most of the twitching happens non-stop (and it hurts too). My feet have atrophied too, I can tell because there is excess floppy skin on the soles of my feet. I Don't have any cognitive issues with hand-eye coordination. My reflexes were tested by 3 neuros which did not comment but I wasn't told they were too brisk, and I don't think I have Babinski's sign, I'm sure the neuro would have mentioned it when he tested it on the sole of my foot. I am quite emotional and cry more easily than before, but maybe this just is a sign of fear and helplessness, I'm not sure. Do you think the fact that I have burning sensations as well may suggest some ongoing viral or bacterial or neurotoxic assault on my nervous system? I just can't understand what could be causing all of this out of the blue. It's really scary, and we all know that ALS can present in many guises. I guess I've got to try to forget about it for now until I see my neuro in 2 weeks, I'm guessing I'll probably repeat the EMG again. We don't have an specialist ALS centre here in Melbourne, so I don't really have other options. Thanks again, I am very grateful for you comments.

Demis
 

comfortable with ALS

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mi
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st.clair shores
hey bala

I thought they told you no als! and now you do have it> iam confused also tell me about your floaters i have them to they are horible...jenny
 

IslGrrl

New member
Joined
Dec 17, 2009
Messages
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PALS
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09/2009
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va
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virginia beach
I hope by the time you get this that your symptoms are sorted out and are diagnosed.

Motor neuron disease is difficult to diagnose - and we are only beginning to understand their processes. Even though Charcot identified a cluster of motor neuron disease symptoms as ALS in 1850, there is still no specific test for ALS. Except for the familial variant, we are not even sure that ALS is a single disease! So it will probably be some time before we even figure out what causes ALS, let alone know how to prevent it or to intervene effectively.

Right now, the only tools our doctors have to figure out if ALS is present are their experience and education, clinical observation, and the EMG /NVC, which are very helpful. To add to the confusion, neurologists are often confronted with signs and symptoms of more than one disease state that each could be contributing a couple of signs and symptoms comprising an ALS cluster. Therefore, unless and until those can be identified and eliminated, no one should jump to conclusions.

It is imperative to be accurate so the right plans and protocols can be implemented.
Bala, I hope you were diagnosed with something(s) for which there is cure - or at least effective treatment!
 

ktmj

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That original post is over 2 years old.
 

laurel

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Joined
Jul 19, 2007
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07/2007
Country
CA
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BC
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Vancouver
I remember reading that Bala was diagnosed with ALS and was going to China for stem cell transplant, but that was long ago.
Laurel
 

Marjorie R. Wilcox

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Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
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New York
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Richmondville
I believe if it was ALS you'd be sweating profusely at any least exersion. Lack of same is not a symptom, neither does it begin with a burning feeling, but loss of balance or weakness for instance.

Extra floppy skin on the bottom of your feet? Give me a break.
 
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