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Dreamcatcher

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Aug 9, 2018
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Reason
Learn about ALS
Country
UK
State
Greater London
City
London
Hello everyone,

First of all, i am sorry for all who are newly diagnosed, hold on and don't give up untill your last breath!

I don't know what is happening with me recently but i hope that is not ALS. However i will have EMG test on August 20th and i will know the truth. I am ready for the worst but i hope for the best. I am 25 years old female.

So, everything started on march this year. I started experiencing various symptoms about a month, it sounded like some kind of virus:
Subfebrile temperature
Sore throat
I was very weak and tired that i could hardly walk and talk
Left face side ache and my left leg ache
Night sweats
Chills
Bone aches and tingling
Loss of appetite
Diarhea
Severe hair loss

However i hasn"t recovered till this day, about
four months i am experiencing this and i think it is worsening:
Weakness in my legs and arms especially the right one
Discomfort in my left face side and it twithes on my cheek
Muscle pain and weakness in whole body, that i can hardly do normal day activities
Chills in the evenings but my temperature is normal
I am always tired and weak
Muscle twiches all over the body but not constant
Constant joint pain in my left leg, my right big toe, left wrist
I am slowed down like an old lady
I am clumsy and i can walk very slow and only short distances
Poor coordination
Sometimes tingling in my lower legs and my back of head
And still I have no appetite

I have done a lot of tests: head and spine MRI, blood and urine tests, i have checked for many infections including lyme disease and various autoimmune diseases, i have sèen oncologist, gynecologist and cardiologyst - still we can't find the reason.

Now i am waiting for EMG, if it will be positive, at least i would be happy that i found what's is for me. However this disease is one of the worst and i never hoped that it could be so serious.
If it will be negative i still could hardly believe that is not ALS even in my age because i don" t know other possibilities...i have a question: can emg test be negative at the early stage of ALS and does my condition sound like early or advanced ALS?

Thanks for all who will read this. Any opinion and advice would be appreciated.
 
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Hi Dreamcatcher,

You don't describe ALS or anything like it, but you certainly may have a systemic disease. Have you been screened for heavy metal toxicity, if there is any kind of exposure you have had?

Apart from that, I would see an endocrinologist or a rheumatologist, at an academic medical center, perhaps in Vilnius. I really doubt the EMG will be helpful.

Best,
Laurie
 
DreamCatcher, here is good news for both of us.


First, I'm very excited to find Lithuania on a map. You're the very first person from LT that I've "met."
Second, as Laurie wrote, there is no ALS is ANYTHING you wrote. Not even close. So you can forget about that completely.


Good wishes to you. I hope you are cured and feel better soon.
 
Thank you so much Laurie and Mike for your answers! This is really good news for me!

Even if it is not ALS i am not feeling well these days but i am holding on. The worst part of it is that i don't know what is going on with me. I have done everything, i have seen almost all kinds of specialist in my country and i have done almost every possible tests - still nothing. That's why i began to thing about rare or maybe genetic diseases...

However i won't give up and i will let you know if something become clearer.

Wishing you the best people, don't loose hope!
 
Doesn’t sound remotely like ALS, but you definitely need to work with your doctors to find the cause of your symptoms. Could be autoimmune?
 
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