Do I have als I’m worried

[Worried19941]

I posted on here before but lost my password so made new one now. First symptoms weakness in hands legs and they got stiff was some twitching both emg came back clean and mri came back clean now 1year later I’m getting more twitching on back but eye legs arms hand Chest head Fingers feel stiff sometimes and jerk hand jerks sometimes my big toe twitched or jerked I thought my arms just get tired more easily and sometimes were twitched feels stiff my leg calves feel stiff and when I’m shower my leg jerked a lot but I am kinda heavy so could have been putting lots of pressure on leg does this sound like als sorry if this is fadt written going to see doc on Tuesday to ask him

 

[Worried19941]

I also forgot to say neck hurts feels weak feel like sometimes it jerks but I’m not sure on this but can hold my head up long

 

[Worried19941]

ATM my arms have been jerking a little I’m worried

 

[lgelb]

ALS does not present with a clean EMG, followed by a year of feeling tired/stiff/twitchy without clinical weakness. Starting fresh with a primary care doc to rule out serious illness and develop a plan to feel better is a good idea.

Best,
Laurie

 

[Worried19941]

Clinical weakness is when you can’t use leg or arm no matter how hard you try right I had MRI of brain cuzz I thought could be ms but it came back clear friends said should do spinal tap and mri of spin do you think this is not als cuzz I can still use all my parts just feel weak stiff jerking arms get weaker easier and twitching all over body like will twitch in eye then leg then 4 minutes later will go go but or back

 

[Worried19941]

And thank you for takeing time to reply

 

[Romeosc]

Clinical weakness is when you can’t use leg or arm no matter how hard you try right I had MRI of brain cuzz I thought could be ms but it came back clear friends said should do spinal tap and mri of spin do you think this is not als cuzz I can still use all my parts just feel weak stiff jerking arms get weaker easier and twitching all over body like will twitch in eye then leg then 4 minutes later will go go but or back

I went through all the tests (4 MRIs- Back and brain) Clear EMG, clear spinal tap draining 40 CC of fluid, Nerve conductivity test, Memory tests, blood tests for everything including:

Chronic Inflammatory Demyelinating Polyradiculoneuropathy

Transverse myelitis
MECFS
Guillain-Barre syndrome
Lyme Disease
Zika Virus
Adult Polyglucosan Body Disease (APBD)
Lupus

Everything came up negative, but I was confined to walker!

4 neurologist were stumped... They thought it was NPH (Normal Pressure Hydrocephalus) until we went to Mayo in MN over Thanksgiving and got the SHOCKING NEWS .... ALS

I am now on first round of Radicava.....

 

[lgelb]

Yes, Worried, that is why we call ALS a case of failing, not feeling, just as Romeo lost the ability to walk unassisted. If you can still move what you used to, even though it might "feel different," the odds against ALS are very long.

 

[Worried19941]

Oh k I thank you for that Help me feel not as bad xd

 

[Worried19941]

Um Romeos I didn’t see your reply are you say my symptoms seem like als and I’m sorry your going through that

 

[Worried19941]

Cuzz most other people say there not like als so I’m worried are you saying they look like als

 

[GregK]

You've now been answered repeatedly, it's not going to change.

Go away, you have become a pest, and you're wasting our precious time.

Good luck, but good bye.

 

[Worried19941]

No I know I have been answer but I didn’t see romeosc answer I was just wondering what she ment by it ?

 

[Worried19941]

But oh k thanks for feed back and telling me my symptoms don’t look like als