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m'leen

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Learn about ALS
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belgium
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brussels
Hi everyone, I've been reading around for a few days on this forum (read the stickies ;-)) and would like to get some advice on my symptoms: do I need to worry or am I just a hypochondriac?
My symptoms, apart from the exhaustion are all on the left side of my body:
-Shortness of breath after even slight exercice (like a walk or washing my hair). Started last summer.
-Since 10 days ago at night I have to rest my head high because otherwise I feel like I'm choking on mucous. I've never coughed up any mucous but I have woken up twice by the sound of someone emptying a glass with a straw- it turned out to be my mucous causing this sound. I do not snore and always sleep with my mouth shut.
-When I try to frown my nose, only the right side of my face goes up, the left sides stays lower and the muscles under my left eye starts to vibrate. My tongue feels normal.
-I often feel very weak as if the oxygen doesn't get completely into my cells
-very bad recuperation from exercice: if I do for instance seated work in a garden (weeding) for an hour or two, the next day I'm still recuperating
-Clumsiness
-Fasciculations, at first everywhere, one twitch here and the next one there, now more localized on my ankles and calves and several ones succeeding each other quickly on one spot at a time
-the little toe on my left foot feels like slurring, I especially feel it when wearing thongs
-less power in my left pinkie, last summer I had to stop the violin because of that
-bad reflexes on my left foot sole and left knee (which made my endocrinologist send me to the neurologist)
-absent reflex on the left side of my stomache, very strong reflex on the right side
-other symptoms (blurry eyesight, itching on hands and feet, fatty acid test turned out rather alarming: 19 instead of the 5 tot 10 range considered normal)
I know there's probably no relation but I have autoimmune problems (vitiligo and male pattern hairloss treated with rogaine) and my father has been suffering from a progressive neurological disease (Nonne-Marie syndrome) for the last 30 years, he's in a wheel chair now.
The neuro did an EMG but it tested negative, however she only tested the right side of my body where I do not experience problems apart from the mucous. My right wrist took extensive stimulation before the desired curbs appeared on the EMG. The eight of June I'm having an IRM.
Sorry for being so long. I would like to believe all these symptoms are due to depression, and not the other way round, the depression coming from my body feeling something's seriously wrong...
 
Baldness and ALS. Sigh

Clean EMG normally means no ALS. Work with your doctors. Vision issues are not ALS. One sided weakness could mean you had a stroke or could be you obsessing. All we can say is: what did your doctor say is wrong, if anything?
 
M,

May I ask you why you came to us? I don't see ALS in your future, but I fear there is still a bleak one possibly on its way or its here. I'm sorry to be so blunt, but figured you would want honesty over sugar coating. Before I looked up No nne-Ma rie Syn drome, I had already concluded some answers.

Symp tom. Possible Reason

Face. Bells Palsy
Shortness of Breath. Heart Condition
Weakness. Again Heart Condition
Absent Reflexes. Ataxia

I hope those come out with the spacing. These are the few that I knew I could work with. My suggestion was having a complete cardio and pulmonology work up ASAP. I don't want to scare you but I don't understand why the doc tor did not explain the extremely high fatty acid test results with you. I would make an appointment tomorrow to be seen. Some of the symp toms could possibly be the warning signs for a heart attack or stroke.

If you tried to oo gle your fathers inherited syn drome, you would see many of those symp toms I pulled out can be associated with it. There isn't a lot of information, but if you go to Fried reich's A tax ia (its brothers disease), you will see many of the symp toms you are experiencing. This syn drome is umbrella(ed) under the M D A. If your Dad is being followed in a Clinic, I would call your PCP and ask for a referral. Or find another PCP, I'm not thinking to kindly of the one you have. And if your father is being seen outside of a Clinic, I still think you should be seen by one.

I don't mean to alarm you and yes, you may change your undies after my response, but never have I answered a post with such urgency. Please keep us informed of what happens. And I'm truly sorry you got lost in the midst of our lemmings. I thank notme (he was just being thorough) for finding you. By the way, if you oo gle your fathers di sease, your post shows up and brings you here! Just thought you would like that.

Oh, and visual problems can be associated with this di sease also.

Now on a lighter note, how does a toe slur?

Don't forget to let us know,
 
So my post got modded.

Short version: GET TO A DOC TOR, NOW! I'm sorry to sound alarming, but after reading the left sided weakness and breathlessness accompanied by an extremely high fatty acid result, it could be the pre cursor to a stroke or heart attack. And since your PCP didn't seemed to bother explaining this to you, I recommend finding a better one.

My post will show up in a couple of hours. Please check for it.

Good luck and keep us informed,
 
totes...u is a cheeky little minx.....but i likes u.......................................
 
My lover across tthe big pond, I have missed you dear. Say all is well.
 
It would be highly unusual for a stroke to cause issues on the ENTIRE left side--face included. In a stroke, the symptoms 'switch' past the neck. Left sided facial issues--right sided body issues. That's why I mentioned a stroke--but I didn't think it was an urgent issue--as the facial issues were left-sided as well.

The other thing that comes to mind as a possible urgent need is the breathing issues--especially if a sudden onset--which can mean things like heart issues, as Toto said--or even a blood clot.

I think I was more abrupt than usual when I read baldness, vision issues and a slurring toe. I don't know of any disease that has a symptom of male pattern baldness. Anyone know that most baldness is actually inherited from the mother?
 
am well tottoes...on top of the world lookin down on................i reads up on here daily and your there often as not....giving it large an avin a giggle........goodonyerjohnny....
 
Thanks all for answering me. Since my first post I've been feeling worse and worse, tonight it's very hard to breathe. I'll try to stick through the night and go to hospital tomorrow morning.
 
Please please do not wait! go now especially if you are finding it hard to breathe! I know it is the middle of the night but it is still hours until morning!
 
Sounds like you have seen a Doctor already. If you immune issd eues it vould be attributed to that. I will tell you that your biggest problem is you have taken every little thing that you feel in your body and lumped it into a symptom. I have ALS and I probably need reading glasses now but I do not think that is because I have ALS. It is because I am 40. What I am trying to say is do not overthink everything and stop thinking, that every, ache, pain, bump, bruise etc is some type of symptom of something sinister.
 
... or something else?

Something else.
 
Notme,

My son had a stroke during delivery. The doc tors realized it by 8 months, when he first started to walk. He dragged his left side of his body. He also had, what they thought was Bells Pal sy on the left side of his face. When the difference in muscle tone came up, that's when things started falling into place. He still has some tone issues and is a true lefty, but has opted using the right instead. As well as having a permanent smirk on his face. I kind of like his smirk.

What lesson did we learn for the day? Don't let a Family Prac ti tion er deliver your 11 pound baby.
 
Oh, I forgot.....

Ge net icists claim that you look at the Mothers Father for balding. Doesn't work in my 32 year old sons case. He has a deep receeding hairline. My father has a full head of hair as well as the other males down the lineage. My husbands side also has no balding patterns either. Hmm, maybe a D N A test should be ordered. JK
 
Hi everyone, thanks again for your support and good advice (even the sceptic one). I made it through the night by staying up untill half past four so that I was completely knocked out and could sleep a little. Breathing has normalized (just shallow).
Right now I feel my symptoms must mainly be due to extreme anxiety (I'm in the middle of psychotherapie stirring up old issues). On the other hand it's really difficult to accept for me that anxiety can produce such concrete things -mucous, wrong reflexes, fasciculations, breathing difficulties, rapid weight loss (4 kilos in 3 weeks) and alarming AA/EPA ratio :evil:- especially since I've never experienced things like this before, but I'll try to focus on other things and not let panic worsen everything.
The neurologist I see on thursday will probably agree to heart testing as my father has been having heart issues since his childhood. (With Nonne-Marie there is a 50% risk that the children get it too, for people who were going to say that its my father that's ill and not I :mrgreen:, my parents are even more scared than I)
A 'slurring' toe is a new name for a toe that doesn't follow the other toes and lingers on the floor:grin:, sorry for that:mrgreen:
As for the balding, I'm doing fine on rogaine (helps better for women then men). Actually it's my father who's bold, and so was his mother, who i've always known with a wig. Hair is a sensitive issue, even for men it's not fun, although it's more accepted. Fortunately (at least in Europe) the 1mm haircut is fashionable nowadays :) I can already tell you that not one dermatologist can say for sure what type of hairloss a person has, let alone where it comes from, but hopefully they can come up with a good remedy for your son Toto's Dorothy. There are plenty of medications for men, unfortunately with many side effects.
Thanks again for the friendly and caring words that you were able to produce in spite of your own difficulties. I'll be back if anything concrete turns up from the testing.
 
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