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broodjeaapspeciaal

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Hey, im new here and i'd like to respond..

I too have allot of fasciculations lately.

A short history :

Over the past few months during nightshifts, i experienced allot of lightheadedness and headaches between my right eye. Somehow, this jumped to the evening shifts.

2 weeks ago, the lightheadedness started again and got my first panic attack.. i was trembling and shaking like madness with the fear of losing consciousness. The day after, i noticed that i was exhausted and i noticed that i got a 'shaky' or slurred voice.. like your standing outside while its freezing. It forces me to talk a little slowly.. and the more i focus on it, the worse it gets.. i dont seem to have it when i have a good conservation with someone.. or : when the mind is blank.

I examine my body allot for lumps / weird spots, and 1.5 week ago i found a weird lump in my breast.. i immediatly feared that it would be cancer. I went to the doctor straight away and he told me it was a normal infection. Somehow, i did not accepted this and kept an eye on this.. the fear went so worse that i visited him again the day after.

4 days ago, i started to experience allot of fasciculations over my entire body with cramps usually in the legs.. sometimes in the shoulderblades.. this with the 'shaky' voice made me freak out and i started to google allot and came on ALS. I do have muscle weakness or muscle fatigue ( like you overdone yourself with an exersize and your arms / legs feel weak, but you still have full strenght if you force yourself to )

but for the record; i only go to work and fitness maybe once a week.. for the rest i just sit behind my computer playing videogames or lying on my bed because.. well, im not really that social. I have been doing allot of exercises like swimming for the past few days, so this could be the reason for the fatigue. Beign not social and not going out allot doing fun stuff can also be a factor that causes me to look at my own body more then you would normally do

However, 2 days ago, the fear was so intense.. i started to compare my left leg / hand with my right leg and right.. and noticed some muscle differences. I'm right handed myself.. and i had an intense panic attack after i noticed that the muscle between my thumb and the finger next to it did'nt had the size as the muscle on my right hand. I thought this could be a 100% true sign of ALS :(

I dont know what to do.. i'm a little hypochon.. maybe because some people i know have been diagnosed with some serious illness lately.. and i visited the doctor 6 times now in less then 3 weeks. I have done a bloodtest yesterday, and it was all OK.. now im getting an appointment with a neurolist next week because the doctor doesnt think its healthy to give me anti-depressive medicines.. he thinks its all psychological though; since i never fell to the ground yet or dropped some heavy things from my arms, and the panic attacks and intense fear of a serious illness makes it a vicious cycle. He thinks getting a safe conclusion from an expert will make the complaints drop.. but still.. that appointment is probaly a few weeks away, and im sitting here, biting on my nails fearing the worse...

I must say however, that when i take some medicines like codein and oxazepam, my consciousness seem to lower and the fasciculations seems to change into tingeling sensations.. Is this a vicious cycle of fear / anxiety stress and panic attacks.. or is the shaky / slurred voice ( which i only seem to notice on my self.. others dont ) with the fasciculations something worse? :(
 

Al

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You don't have ALS. You may have BFS. You're freaking out is making things worse. Go to a herbal store and get something there if your doc doesn't want to give you something for anxiety.

AL.
 

broodjeaapspeciaal

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You don't have ALS. You may have BFS. You're freaking out is making things worse. Go to a herbal store and get something there if your doc doesn't want to give you something for anxiety.

AL.



How do you know for sure? what are the symptoms that can only be caused by ALS? :oops:
 

broodjeaapspeciaal

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You don't have ALS. You may have BFS. You're freaking out is making things worse. Go to a herbal store and get something there if your doc doesn't want to give you something for anxiety.

AL.


I must say that i also seem to swallow allot lately.. sometimes the fluid seems to be increasing.. sometimes i have a very dry mouth.. chewing also seem to take more energy.. is this because im focusing too much on it?

What are the first symptoms of bulbar ALS?
 

rose

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None of what you describe sounds like ALS. Perhaps if you found a different focus for your attention? Honestly, terms like "bulbar" shouldn't even be in your vocabulary. Trust your doctors, trust your test results and get off of the internet.

Take the time you have been using to inspect yourself ,and search the internet about worse case scenarios, and use it for something else. You said you're not a social person, but there are still avenues you could pursue to get your mind off of it..... One idea is if you like animals, shelters always need dog walkers.... etc.

Good luck to you., I hope you're feeling better soon :)
 

silvermane

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Mis-diagnosis

I thought I would share with you my journey through the past few months after being diagnosed with MND in April of this year. It has been a harrowing time and I can only feel very deep empathy for all those who are going through, or have been through this situation.

About twelve months ago I was referred to a neurologist after having experienced ongoing cramps in my hands and arms for some time leading up until then. The neurologist sent me off to have an EMG at which point it was noted that I had some minor fasiculations in my left shoulder which I was unaware of and could not feel. Over the next three months these fasiculations became more prevalent having extended down my left arm and then to my right. After going back to the Neurologist in March of this year he diagnosed me as probably having MND and referred me to another neurologist for a second opinion. I underwent another series of tests and examinations, including another EMG. This neurologist promptly informed that I definitely had MND and I could look forward to losing the ability to speak and to swallow within 3 to 6 months. I now had fasiculations in my tongue as well as my arms. Naturally I was scared stiff at being given this death sentence and I went home to start putting my affairs in order.

Since that time nothing else has changed and in fact my cramps have all but disappeared and the fasiculations have diminished significantly although they do reappear from time to time in different muscles including my right thigh, abdomen and hands. I still have minor fasics in my tongue. Importantly however is the fact that I have not experienced any muscle weakness whatsoever and in fact I have built up muscle strength in my arms and shoulders as a result of doing light weights every day. Apart from the fasics and occasional cramps in my hands and arms, I have no other symptoms at all.

I have seen my neurologist twice since my diagnosis, the last time was today. The last time I saw him was about three months ago where he still insisted that I had MND even though there wasn't any indication of the disease having progressed and he wanted me to start taking Rilutek from the next time he saw me which was today.

At today's appointment he asked me how things were going and when I advised him that nothing had changed since the last appointment he stated that my symptoms no longer appeared to meet those of someone with MND and that he now felt that I may have BFS. He then did a strength test and was surprised when he realised that I was actually significantly stronger than the last time he tested me.

So fingers crossed, the shadow of MND appears to have been lifted from my shoulders and I can look forward to life with BFS which is just a minor annoying little thing compared to MND.

Having experienced the depths of despair over the past six months and now having come out the other side, the feeling is wonderful. How I pray that no one should suffer any disease such as MND, and for those that are, or have family members in this situation, my thoughts are with you all. This forum is such a wonderful place full of wonderful people whose support and humour is a credit to you all.

I wish you all well as this will hopefully be my last post - at least as someone with MND.
 

KANSASTOM

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Both of your doctors are very careless and insensitive, they should be sued.
 

wright

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I'm curious to know what the EMG showed and what other tests they ran.
 

CindyM

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I had a similar experience. Three local doctors kept talking to me about ALS. One even called my home and, upon being told I was away on vacation, told my husband that I should be very careful and reserve my energy, as I was a "very sick woman." Another used that exact same phrase to me in an office visit.

But I wanted proof. I wanted tests, charts, blood work, anything that said ALS. (This was back before I knew how the DX process works.) So they sent me to an ALS clinic and after lumbar punctures, EMG's, and the whole nine yards the clinic said they were not sure what I had.

For 2 years I have been wondering whom to believe- the 3 docs with lots of "life" experience but little MND, or the young guy at the clinic who sees lots of cases? And one thing the clinic doctor said before he ran the tests is, "I promise you this is MS or Lupus." When the tests he ran came back negative for those diseases, I really started to wonder whom to believe.

One thing the ALS doc said is that everybody, even local neurologists, see weakness and twitches and think "ALS." It is a common mistake.

But my local neuros are now saying "Maybe we missed something. Maybe you are going to be fine." And my pulmonologists are saying, "Maybe it is MG."

I have taken flack on these boards for not pursuing a DX with more energy. But all of the PALS I have met here do not define themselves by their illness, and I refuse to let a lack of DX, or fear of one, rule my life.
(End of rant. :-D)
Cindy
 

Al

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I'm just glad that silvermane doesn't have MND. I'm not sure if they are sue happy down under.

AL.
 

broodjeaapspeciaal

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The cramps, fasciculations and the resulting panic attacks make me freak out...

i really think its ALS and i cant seem to stop those thoughts.. :cry:
 

Al

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I've moved this to it's own spot because it sort of hijacked darlav's original post about false alarms.

AL.
 
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