Newbie : Als symptoms?

[Mark31]

Hello , My name is Mark I am a 31 yr old with 2 lovely daughter ages 6 and 3 and my 3rd baby is on the way.. The story is I went to my doctor last march just to have a physical exam after a week they called me that i have vitamin D defieciency so i started taking 2000 iu of vitamin D , on the 3rd week of april 2013 i noticed i got tingling in my face so i went back to my primary and he told me i got face neuritis and prescribed prednisone so after couple days the tingling disappear but on the 1st week of may I woke up wth two burning sensation on both of my legs calves area my primary doctor ordered emg testing right away and referred me to a neurologist..The first 48 hours the burning symptoms slowly dis appear by the 4th day it changes to leg pain,with mild weakness and pain specially the calves area, on the 5th day it happens that someone cancelled their appointment so i got lucky that the neurologist sees me in the 5th day he did some reflexes testing and ordered mri of spine and ct scan of throat because i am a dhyspagia patient for almost 2 yrs now... after a week every single symptoms that i am havin completely disappear i thought i am cured ...the second week of may 2013 i did all the testing mri cervical spine and ct scan of throat everything came negative..the 3rd week of may i did the emg testing on that same week about 4 days of waiting for the emg testing the doctor called me and told me that the test was inconclusive on NCV, and EMG testing detected a weak signal from my legs but he couldn't explain more and i need to go back to the neurologist so he can explain it to me and do further testing that's was last May 24,2013 ..the next day saturday May 25,2013 i woke up with a muscle twitching on my left arms and on that same day i started to feel the mild weakness and pain the the calves area it feels like the whole Saturday everything changes in just a day, the next morning my twitching started to spread all over my body and the mild weaknes spread to my arms with pain so today is the 31st of may and the symptoms still persist with a new symptoms of upper jaw discomfort just this morning I am completely helpless on whats going on i can still stand up walk fine but every part of my limb hurt and twitch that will last only for 5 sec or less... I do have an appointment this coming Monday on my neurologist.. Thanks for reading

 

[Nikki J]

Hi
I understand why you are scared. To be told you have some kind of problem with a test but not have it explained immediately is awful. I am glad you have an appointment on Monday and sorry you have to wait.

Not a neurologist and am unclear as to what weak signal means but never heard that used in describing ALS. I know that some of patterns in a diagnostic ALS EMG are large waves. Your symptoms do not sound like ALS either. It does not usually have pain, it does not spread so fast, twitches are later in the game...
Was you vit D ever retested? I wonder if the first test was incorrect and you are now overloaded with D? Unlikely but I did have a friend who was vit D toxic and she had tingling and some other neuro symptoms. She stopped it quickly because she was a pharmacist and figured out quickly what was wrong.

Try to enjoy the weekend and your family. Monday will be here soon

Best wishes
Nikki

 

[Nikki J]

Hi
Typed a long answer and it vanished!
Sorry you were left hanging. Doesn't sound like ALS. It is not a sensory illness it doesn't spread all over so fast never heard EMG described as weak signal
Did you have vit d rechecked. If first test was incorrect there is faint chance you are vit d overdosed

Try to enjoy your family and the weekend
Monday will be here soon
Good luck
Nikki

 

[Mark31]

Thank you Nikki for replying, I tried to talk to my GP about having check my blood again and if he can find something because thats the only supplements that i take,and after taking the vitamin d in 3weeks time tingling in my face start and stay for couple of days and another symptoms shows up until every part of my arms and legs starting to feel weird kinda weak and the twitching starts everywhere that only last for 3 to 5 seconds... I ask my Gp if he could evaluate me again but he told me because of the emg being inconclusive he suggest that the neurologist will be doing all the testing that i need for now.. But i will be seing the neurologist this monday and I hope everything will be fine...

 

[Nighthawk]

Hi Mark,

Your symptoms don't sound like ALS to me. I am not a Doctor nor a Neurologist but they don't seem to be symptoms of ALS.

If you were on Prednisone, be mindful that this drug suppresses the immune system and can create long term symptoms that may resemble other diseases, specially if you withdrew too soon from taking it.

Furthermore, ALS is not sensory because it affects the motor functions not the sensory nerves so, what you describe might be caused by something else but not ALS.

Just let your Doctors/Neuros do their jobs and come up with the right diagnosis for you.
Just do not attempt to diagnose yourself.


Regards,


NH

 

[Mark31]

Thanks for replying Nighthawk, I took the prednisone for 5 day course only for my facial neuritis and that was the 3rd week of april 2013...I will tell my neurologist about my symptoms for the second time specially the new upper jaw pain discomfort that i am having , it just happen so fast that i am overwelmed with this symptoms specially with my leg weakness with pain including my two arms with twitching every 3 -5 sec and will stop.. I know i am thinking way ahead and that is bad for me.. I will try to be positive...I am very thankful for your time to reply...

 

[Mark31]

Hello again,

I just got back from the neurologist today and talked about the emg result which the primary doctor told me inconclusive it turns out the emg result found minor abnormality but the neurologist told me its not ALS ( i felt the whole stress lifted away) although i still have some muscle twitching all over and some perceived weakness in my arms and legs with pain specially in calves area the doctor told me it could be due to stress and anxiety.. So first emg turns out with minor abnormality but not associated with ALS now he wants me to do a second emg and i think hes going to do it in his office in 3weeks time., for now the anxiety and stress thats been created 2 weeks ago started to clear now.. Hoping that the 2nd emg will be perfect 3weeks from now...

 

[Nighthawk]

Mark,

That's very good news.
Your EMG just revealed that you do NOT have ALS. Isn't that great news?
Keep following up with your Neuro so he/she can determine the real reason for the symptoms you are feeling.

At least, ALS was ruled out and should mean less stress over your shoulders.
Let's hope that whatever your Neuro finds is just minor and treatable.

Good luck to you.


NH

 

[vickim]

That is great news. Time to celebrate! I am so happy for you.

 

[Mark31]

Thanks for the reply, I am very happy that the first emg test got only "minor " abnormality thats how he explain it..but still i need to go back just to rule out whats causing this so i got another emg testing scheduled this wednesday and this time the neurologist will do it by himself not on outpatient clinic.. Still thinking positive that this is just minor thing that is treatable and hopefully i will have definitive answer on this 2nd emg test..iam very thankful for you guys in this forum for all the support, hope everyone of you is doing well..

 

[oscar1]

just read weak signal is connected to myelin problems. im not a doctor but might help you good luck

 

[Mark31]

Hello again, The Neurologist decide to do the EMG yesterday and Nerve conduction test before we start he explain what is the first result

First: Nerve conduction test inconclusive, EMG needle test is normal May15,2013

Second : Nerve conduction test Normal, EMG needle test is normal June 4,2013


So in my Neurologist opinion the first inconclusive test in my nerve conduction was an error. He just want to do it by himself just to rule out the first test and because he did not perform the first emg he doesn't trust the result.., and he explain that experience neurologist can find the spot right away and he can tell me I f I have the abnormality in just 1 poke of the needle..., he added that emg testing is a good instrument to detect abnormalities specially if the person performing it knows what they are doing..,He told me that I don't have ALS and kinda laugh, but because I got some weakness in my arm legs specially the muscle area and twitching ,pain, burning sensation it worsen the symptoms when I received a call when they first told me that the emg is inconclusive that made it worst and the anxiety and stress kick in, that's hes opinion so for now he told me to relax enjoy life and told me that I don't have any disease..He told me to follow up in a couple of months...


so its been a month and half now since the first symptoms I still feel the muscle getting tired easily specially today ,I did start to do my normal routines and feel that my arms getting tired my legs are improving but everytime I sitdown or laydown at night the twitching comesback.,doesn't last it just jump in any part of the body specially in the arms legs face area only for couple of seconds...So for now I will follow my neurologist and try to go back to my normal routines, hope everything will be back to normal