First diagnosis was PLS, but rapidly deteriorating!

[Trapped in myself]

By the title you can see my dilemma! The problem is that my upper motor neurons seem to be deteriorating faster than my lower. So I still have some strength, but I am super stiff! I was diagnosed in June of 2010 at which time I could still walk and talk, however since then I have been confined to a wheelchair and have to use a communication device. I am not where this is going, I am getting tiered so I will stop here.

 

[kmendsley]

A huge part of being diagnosed with PLS is that you don't have any muscle wasting. Does this still hold true for you? Have you noticed any muscle loss/ atrophy? If so, you may have been misdiagnosed. I would follow up with your current neuro and ask for another EMG or evaluation to see if your muscles are detoiorating. ..then go from there. Good luck to you.

 

[Trapped in myself]

I have lost muscle, and I am weak, but my upper mn seem to be getting worse faster than my lower mn. My neurologist said it could be a form of ALS that involves mostly upper mn.

 

[kmendsley]

Hmm, I am sorry then. You need to get a full EMG ASAP. ...ALS can affect any body part first...doesn't have favorites. ...keep fighting to get that diagnosis....whatever it ends up being so you can get the help you need. Also ask for another brain MRI if you can to rule out some other things.

Again, I am sorry...there is a good chance you were misdiagnosed with PLS, and may have ALS instead.

 

[notgivnup]

I am so sorry this is happening to you. I agree with Kel, you need to get back to neuro and get some more testing to get better answers. {{HUG}}

 

[Trapped in myself]

Thanks! I will take your advice.

 

[notme]

In the meantime, please have the doctors treat the spasticity you're experiencing. There are some good medications that can help.

I didn't see if you had any other posts--but PLS usually takes a long time to diagnose. It's a 'wait and see' thing--to see if it progresses.

I hope they find a different answer for you, hon--but you will find a lot of support on this site, whatever the eventual outcome. With PLS, you can post in that forum--you don't have to stay on the "DO I HAVE' section. Welcome to the group--though I'm sure you don't want to need it!