Old 01-10-2017, 07:00 AM #1 (permalink)
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Default I'm almost sure. So sad

Hello

I'm 22 year old girl from Denmark.
In september I started getting tired all day but was blaming my new study life.
At the same time I realised that when i swallowed my spit, it would not go down my throut as easy as it used to do. I forgot it, cause it didn't bordered me.
Then I got costipation (sorry for the details).
In mid oktober I started waking up very early in the morning - even more tired through the day. I was constantly feeling lightheaded as well.
Start november I started waking up 2 times at night. About a week after that I got very dizzy in school, took home and noticed that my left arm started feeling funny. I could do everything with it, it just felt weak. 2 days after this, my right arm began as well and felt a bit numb at the skin on the hands. Same day I noticed that my legs began feeling weak as well. Not weak weak, but like jellow. At night i would sometimes have a deep shooting pain frum my one glute and down the back of my thigh.
My doctor said - It's nothing and since then I've been in contact with about 10 neuros and 3 different hospitals. They all say it might be stress.. So I've been to therapist 2 times a week since. I can't really see the point, I'ts not helping me.
In mid december i realised that my breath was faster (shorter). My muscles twitch ALL over the body, and I've had cramps in my thighs two nights 2 weaks ago.
I have no problem speaking, eating and swallowing (other than my trougt feels weak getting things on the way down).
I paid for an MRI scan in end of december although the neuros said that it would'nt make sence.
It showed two tiny tiny white spots in the front of the brain. They said it could'nt have anything to do with my symptoms.
As I don't have any clinical weakness, they won't do more.. but my arms and legs FEELS weak.
Another thing I've noticed is my right eye pupil is now bigger than the other?
The worst thing is my breath and sometimes I have to take a deep breath (like I'm not getting enough).
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Old 01-10-2017, 07:34 AM #2 (permalink)
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Default Re: I'm almost sure. So sad

No ALS symptoms so take that off your list. Have you seen anyone for anxiety yet?
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Old 01-10-2017, 07:41 AM #3 (permalink)
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Default Re: I'm almost sure. So sad

No symptoms??
I have twitching all over my body (and my tounge), shortness of breath and feel like I have to use my abdominal muscles to breathe, weakness (just not clinical) in all limbs, stiffness...

Yes, I've seen therapists for my anxiety and been on Oxapax and setralin (anxiety pills and antidepressiva) for over a month now even though I don't feel anxious. Just haven't worked
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Old 01-10-2017, 07:53 AM #4 (permalink)
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Default Re: I'm almost sure. So sad

The hallmark is CLINICAL weakness, if you are not clinically weak this is a very good sign. The other symptoms you mention can be caused by so many things that on their own they should not cause worry for ALS. The fact that your symptoms are present in lots of areas at once again points away from ALS. It doesn't start that way. Dizzyness numbness point away from ALS as it is not sensory.

Your symptoms need to be addressed so you should go back to your general doctor and ask what they think it could be as you don't feel the anxiety treatment is working. Don't fixate on ALS be open to other options as what you are describing really doesn't sound like ALS

Good luck
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Old 01-10-2017, 08:50 AM #5 (permalink)
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Default Re: I'm almost sure. So sad

Ya sorry my friend, you don't have the requirements for this exclusive club.
Al
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Old 01-10-2017, 09:35 AM #6 (permalink)
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Default Re: I'm almost sure. So sad

I know clinical weakness is the hallmark... if you are having limb onset - IF I have ALS, I would be respory onset and that could explain the dizziness. I'm not really numb on hands - i can feel cold and warm, the skin just feels different
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Old 01-10-2017, 09:50 AM #7 (permalink)
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Default Re: I'm almost sure. So sad

No, you don't have any symptoms--respiratory or otherwise. I don't know how you got to ALS with your symptoms. You are experience issues, clearly, but they are non-specific and not in any way related to ALS. Twitching means nothing. You need to work with your primary care doc and stay off of google and this site.
Best wishes to you.
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Old 01-10-2017, 10:15 AM #8 (permalink)
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Default Re: I'm almost sure. So sad

Clinical weakness is the hallmark full stop. Respiratory onset has clinical weakness in the respiratory muscles. I am just starting to get symptoms in this area and have just been given Nippy to assist with breathing. Dizziness is not one of my symptoms.

You need to stop now, you seem to be trying to convince yourself that you have this despite the fact that your doctors don't think so and your symptoms don't tie up with normal presentation. It's not healthy for you to be on here as it seems to be convincing you not reassuring you. Work with your doctors to help with your symptoms.

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Old 01-10-2017, 10:36 AM #9 (permalink)
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Default Re: I'm almost sure. So sad

How will they measure clinical weakness of the respiratory muscles?
Isn't clinical weakness when the doctor says "push your legs through my hands" or hold your fingers straight" and then they will push them together? I didn't have any EMG's - only MRI of brain
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Old 01-10-2017, 10:51 AM #10 (permalink)
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Default Re: I'm almost sure. So sad

You can get a "pulmonary function test" to test the strength and capacity of your lungs and the muscles around them. Since you say breathing is your worst problem, you can go to a pulmonologist to have this done. But I agree, you are in the wrong place here.

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Old 01-10-2017, 11:25 AM #11 (permalink)
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Default Re: I'm almost sure. So sad

'thecat' -- If you read the original post carefully, you will see that she has been in contact with 10 neurologists and 3 hospitals, all of which have indicated that they see no cause for concern.

EnToTre --The folks here do not see ALS in your description. The several medical professionals who have examined you do NOT see any clinical evidence of MND or any other neurological concern at this time. You need to move on and continue to try to address your health anxiety.

Best wishes,
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Old 01-10-2017, 11:45 AM #12 (permalink)
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Default Re: I'm almost sure. So sad

Laurie has given you good advice, get your doctor to refer you for a full respiratory evaluation as breathing is a major concern for you. I understand it's difficult having symptoms and not knowing what's wrong, diagnosis with these kinds of symptoms is unfortunately quite lengthy. You have to keep a log of your problems and keep going back to your doctors to explore all possibilities.

I hope your doctors find some answers for you soon

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Old 01-10-2017, 02:09 PM #13 (permalink)
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Default Re: I'm almost sure. So sad

I agree with Laurie. There are many things that can cause twitches, so take that part off the table. If you are having issues with limbs and sensory symptoms, why did they not do MRIs of your spine? I would ask for a pulmonary function test. If that is abnormal, they can isolate why. If it is normal, you will go back to your primary care doctor and go from there.

In the meantime, I would try to deal with anxiety. With or without illnesses, anxiety is a beast of its own and can cause all kinds of symptoms as well as make existing ones much worse.

I'm sure you've given up all caffeine because that can cause twitches.

I don't see anything that resembles ALS in your post but I understand you're stressed and want answers. I just think this forum is the wrong place to come.
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Old 01-16-2017, 07:19 PM #14 (permalink)
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Default Re: I'm almost sure. So sad

A pulmonary function test will assess your breathing ability. With a sniff test your diaphragm movement can be assessed.

Twitching, heaviness, etc. Can be fatigue,stress,anxiety, poor sleep, electrolyte imbalance, dehydration...the list goes on? Ģo see your pulmonologist and get a physical. It is a good place to start.
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