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Ozgur

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Hi all. I read many threads until decide to open this thread. Oh and sorry about my english.

First of all I went 4 neuros. All was said "you are not als". But i think they are not expert of MND so they were maybe misdiagnosed me.

My history was began 1 month ago with widespread fasciculations. They were all of my body but especially at my right leg. I've spent my time to motor neuron diseases from begining until now. My right hip has some pain and a "thing" which i couldnt explain. Actually my whole leg acting weird. My left leg is okay but I feel something develops at it (not anything noticable yet). I dont know i have a weakness because i can do everything after 1 month. But my walking is weird. I noticed some balance problems when walking. It was appear 1 week ago. My 4th neuro was write her report this: "legs has brisk reflexes". Absent babinski (by 2 different doctors), negative romberg (by me).

My other symptoms:

- increased saliva (no drooling, especially when i concentrate to my mouth)
- wrist pain when i use them too much (both of my leg)
- swallowing diffuculty (come and go)
- burning sensation (2 or 3 times at any location)
- frequent urination (last 1 week)

My brain MRI okay. Cervical MRI report: "cervical lordos is flatten" and some diffuse bulgings.. nothing at spinal cord. My EEG report: "cerebral bioactivity has mild disturbance". My blood work report: "B12 deficiency" it is 166.


I had an EMG about 2 days ago and my doctor said "it is completely normal". Here is my questions.

1. Is a clean EMG means; "fasciculations is not due to ALS or LMN" ?
2. She did not tested me from bulbar area. Is anything appears on EMG if i have bulbar onset? Therewithal she didnt pined to my hips. Is this EMG tottaly right?
2. In MND, Is increasing saliva means a real increasing or its because of swallowing problem? or both? I read many different comments.
3. Is this symptoms familiar for PLS?

Thanks for reading or not :)
 

APL55

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I read on this site that a clean EMG is a good thing,if you think you were not diagnosed right, find a ALS clinic in your area they should be able to help you,your saliva and swallowing could be caused acid reflux,not sure what you mean about burning sensation,I hope you find an answer and some piece of mind.
 

nishant

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you definitely have ALS, definitely your doctor can be wrong but Google can't be and for sure some stranger who just confirmed that you have ALS isn't wrong either.

please trust your doctor more and Google less.
 

BarryG

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Terrible hypochondria
 

Al

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Not being a doctor, I'd agree with the others that it's hypochondria. You've had symptoms 1 month saw 4 Neuro's and they're ALL idiots? I think you need a different doctor.

AL.
 

_Saj_

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Put yourself some limit.

If you decide go and visti a Doc you should make the effort for beliving in whatever he tells you.
I had some big ALS fears adn had a real hard time. But I became aware that I had to draw a line somewhere. You can produce yourself strange sympthoms if you look for them . Specially if you're looking for "sensations".

In your case 4 neuros and a clean EMG seems a good and solid line to me.

- increased saliva (no drooling, especially when i concentrate to my mouth)
so you got more saliva when you "search for it".. that's doesn't sees a solid sympthom

- wrist pain when i use them too much (both of my leg)
mines ached too if I use them too much... I'm not a doctor but it could me a myriad of things.

- swallowing diffuculty (come and go)
Sympthom of anxiety and fear


- burning sensation (2 or 3 times at any location)
you got to become aware that a "sensation" is not a sympthom until it turns into something somehow "measurable"


- frequent urination (last 1 week)
Sympthom of anxiety and fear


Please relax
 
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Ozgur

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emg results

Hi, me again, hypocondriac. Thanks for all your replies. I generate some new symptoms.

Shortness of breathing. I need to take a deep breath often. And excess yawning. I yawned 30 times yesterday.

I had an another EMG today. My neuro first find a denervation on one point at my right leg. Then he pin the needle same area 2 times but this time she didnt saw anything. She called another emg specialist and pins the needle at same point/area. still nothing.

What is that mean? Is this possible to find a denervation first but another tries are not?

Here is the results.



 

SoLiDG

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It's easy imo... go the B12 line.
You need 2injections per week for up until 2 years (that's when neurological things are there).
Might help, but needs some time!
 

TedH5

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Was this Neuro number 5? What did they tell you after the EMG? Did they tell you that you were OK? I hope so. What about the "EMG specialist" you said that came in, what did they tell you about your EMG? It is evident that you are extremely scared. I wish there was an easy way for all of us to convince you that you do not have ALS. What first made you think you potentially had MND? Was it the internet? Remember the internet can not think. It can not make decisions. It just regurgetates info sometimes it connects to the search subject and sometimes it doesn't. If I google my name on the first page their are 10 results. 3 of the 10 results are connected to me. The other 7 are not. Google says that I someone with my name (call it my symptom) is a Dr. Well I know that I am not a Dr so google is wrong. Google says that someone with my name (again call it the symtom) lives in Honolulu Hawaii. Trust me my family would be shocked to know this, so again Google is wrong. Then there is a picture with someone of someone with my symptom (again my name) walking on the Golden gate brige. I have never been to the Golden Gate Bridge. I hope you get the point. Believe me I am not ridiculing you I am trying to reassure you that only a Dr can tell you what is wrong. Not the internet and not me (even though Google said I am a Dr) or anyone else on this forum. I plead with you to trust your Doctors and enjoy your life. You will be much happier! I wish you much health and happiness! Any questions ever please feel free to ask, we will always answer to the best of our abilities.
 

Ozgur

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@SoLiDG

I used injection of B12 5 times and B12 drugs 2 weeks. but never help. you said it must 2 years? hmm..

@Ted

Yes i'm absolutly understand you and all people that tell me "definitely you havent got any MND". And yes she is my 5th neuro. She said "i found a denervation first, but i dont find anything when i look at same area again." She pin the needles 4 times at the same small area but there is nothing found except first one. I want to know that what is the mean of "first there is a denervation but after its dissappeared" sentence!? Is it always appear to monitor if there is a denervation at that area?

She tell me "we want people to come again if we found any abnormality. But your EMG was okay (even your NCS results are perfect) so i dont want any control EMG. Anyway if you'll realise a weakness f.e. you'll have trouble to move your arm/leg. Come again" . My 4th neuro said "your legs has brisk reflexes". 5th neuro said "brisk reflexes but not too much, almost normal". EMG specialist said that "i think there is an atrophy at right ankle area or hypertrophy at left ankle area.." But 5th neuro said "no its not". Funny thing is that "i said this atrophy thing to my third neuro." She declined. Is atrophy came this type? Without actual weakness?

My story was began with widespread fasciculations/twitches and yes i googled "twitches" and found ALS. This was happened about 1.5 month ago. I did many many strength tests. My right leg is being abnormal (i couldnt explain what i feel) after this strenght tests. I very obsessed about ALS. I know that. I tried to throw out als tihnk to my mind but i couldnt. Because i read many many ALS stories and i realize some of their symptoms look like me. For example i read a man who gets 3 clean EMG and 9 neuro. Everyone tells him you are ok but they found he has ALS after 1 year or less. ALS comes my mind again when i read a story like this. And i'm reading a web site;/als/symptoms"]. At symptoms area; i see that i have these some of symptoms. Excessive yawning, cold leg, balance problems, excess saliva (though it passed 4 days ago), fatigue, pain, some times breathing diffuculty etc.. I couldnt understand what is the "clinical weakness" so i cannot say "i have weakness". but i realize i had foot drop at right leg 2 days ago. but not sure.. I think i'm already dorsiflexing my ankle.. I feel my right leg tighten when i walk. Other people cant see anything abnormal to my walking but i feel its weird.

So, my some symptoms came when i read that they are symptoms of ALS. I see that. I have GERD and post-nasal drip.
 
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Al

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Once again, You can't believe everything you read. People lie, exagerate, post wrong information, suffer anxiety and imagine all sorts of symptoms. This is one of the best sites but even here sometimes misinformation slips through. Find a doctor you believe if you can.

AL.
 

Ozgur

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Al, i'm thinking i have only one option to do; waiting. I was tired to go neuros, emg's, MR's. But waiting was more easy if my questions are answered. Everyone said no no no. I was understand but my questions still there.
 

Al

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I don't have an answer to your denervation question but wright probably does. He may see this and answer.

AL.
 

TedH5

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Do you have ny clinical weakness? In my experience weakness showed up before twitching and before all of my muschles showed abnormal on the EMG. I can understand being concerned about a neuro as I learned that my very first was not very competent. However my next 2 have been great. If you have seen 5 I and they have given you consistent answers then I would feel safe.

Also when you have a MND then yes you usually have brisk reflexes. However having brisk reflexes does not mean you have ALS. Heck you could just have brisk reflexes and nothing wrong with you. Please keep this in mind.
 

Ozgur

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No Ted. no one told me that i have clinical weakness. What about yawning? I woke up today and yawn 9 times in 5 minutes.. I read that yawning is a reflex and could related to be a MND..
 
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