Oh and we just got him scheduled for a baclofen injection, a trial run to see if the pump will help him more than the oral medicine. Really really hope it gives him so major relief from the spasticity.
No he is not a member on here. I hope he will one day join, but for now he is just not ready. He's still struggling with accepting all of this, so we try really hard right now not to look to far into the future, it just scares him. I think that is one reason he is apprehensive of joining this site yet, may be too much at one time for him to learn. I do think he would like to talk with you though, your situations are so much the same. Maybe shoot me an email if you feel up to it and I will pass it along to him? [email protected] or I am on FB as Kelly Edenfield. I cant private message either yet, still a newbie too.
(Riggz10) To answer your questions, yes, I did notice that my legs cracked when I stood up, etc., but I'm not sure if it was ALS-related. I experienced a lot of pain in my legs during the onset of my symptoms - it felt like my shins were about to cut through my quadriceps while I was standing, if that makes sense. I also had migrating burning pain in my legs, arms and hands, although my doctors are unable to provide an explanation for these symptoms. I can still walk on my toes, but not on my heels because my ankles are too stiff. I wouldn't necessarily compare my situation with yours because all of my neurologists have said that my presentation was very atypical. I think in your case, the longer it takes your doctors to figure it out, the better it is for you (ALS-wise, at least).
Riggz10 - I've reviewed your posts and I'm sorry for what you're going through. I (obviously) don't know if you have ALS, but it sounds like something is going on and I don't think you're crazy. However, I agree with Nikki's statement that you're typically safe if you have a clean EMG in the absence of other clinical abnormalities. It's true that I had 3 clean EMGs prior to my diagnosis, but my upper motor neuron dysfunction was very apparent when the tests were performed.
Like you speak of stiff legs? Did your legs feel like ran 10 miles when you didn't run at all? Did they feel like they were cracking every time you stretched out? Can you walk on your tiptoes and heels?
Hey man. I am so sorry for your diagnosis. I feel like I am on the same road as you. Same age, have had 4 EMG's. Just alll doctors saying they are normal. Yet I sit here still twitching everywhere with legs that are so stiff and uncoordianted. Losing the use of my hands. If you can, can you briefly read my most recent thread and tell me what you think?