Tokahfang

Hi Tokahfang. I was wondering if you wouldn't mind telling me about the SPG7 mutation you have. What does that mean and how were your doctors able to identify it? PLS runs in my family but I don't think my mom's doctors were able to pinpoint a gene or a marker for it. I know not much is known about PLS, so I'd appreciate hearing your experience, if you don't mind sharing.

I've been slowly adjusting my dosage of Tizanidine the past few weeks. I'm learning that I need a certain amount of spasticity. When I went up to 8 mg / day, my knees were very unstable and painful. Now I'm taking 2mg in the morning and 2mg more at night. Knee pain is basically gone, except my dr found a spur under my kneecap. He gave me a Rx for Tramadol for knee pain. I am back to walking on my treadmill (not going nuts with it) because all the laying around was making my back hurt. Legs feel heavy but not painful. This seems like a never ending ordeal and I'm only at 5 months. Don't know how you do it. I want a diagnosis but maybe it's better that I'm confusing them!

do you know most users online was nearly 6000- good lord becky i bet less than 10% are ill, that makes over 5000 people suffering als health anxiety in one day. thats a lot of counselling. a full time job shame you cant get paid - happy valentine take care margaretX

Hey Tokahfang,
Sorry to keep showing you Videos of My Gob, but does this look like a Tongue Fasciculation?
http://www.youtube.com/watch?v=CPH86EB0qnA

http://www.youtube.com/watch?v=H6yjz26rtBg

xxx

Thank You Tokahfang. You have been helpful :). I appreciate it. I think the reason I don't sound confident is because I didn't want anyone else in my house to hear I was Recording My Voice haha.I'm not confident in reading Presentations and out loud. So, just to clarify, no Nasalitty? Nothing like the Dysarthria sound?

xxx

I'm sure it doesn't help that I do a LOT of walking for my job. I am thinking of switching to a desk job but even driving hurts my knees and shoulders. I don't want to give up. I don't have a definitive diagnosis yet (he said I do have a neuormuscular disease) and I really want one. This sounds stupid but a part of me feels that I need to "prove" that there really is something wrong with me. I have been in the same job 17 years and I would hate to leave it. My case has been so sudden. My condo has several levels. I want to sell it before I can't do stairs. I am still in a bit of shock, sorry for rambling.

Thank you very much for responding. You make perfect sense. I had NO joint pain until 4 months ago. The bad news is that I think that my joint pain is a combination of the UMN thing and my reaction to cipro, and doctors don't know how to stop the progression of cipro induced joint damage. I might be a unique case. My only guess is that the drug reaction sped along my neurological disorder. Four months ago I was running miles at a time, now my knees feel as if they're being twisted from the inside, no matter what position I put my legs in. My muscles have been tight my whole life - I was in a back brace for 5 years for scoliosis as a child. I had a good run of 40 years but now I feel like a bomb has hit me all at once.

Do you have a lot of joint pain? My story started only back in September. I had a reaction to an antibiotic (cipro) then all my symptoms started. I keep reading how "painless" this stuff is but my shoulders and knees are in almost constant excruciating pain. I don't know if it's because of weak muscles or cramps or my drug reaction. Doctors just say MND is painless. I know I have UMN disorder of some sort. The pain is horrible and I'm still working. Sorry my problems seem like nothing compared to what you go through.

After I posted them Videos to you last night, I found out I can move my Soft Palate if I try hard to say 'eeeh' and 'aah' e.t.c. so I don't know if that means there is slight weakness?

xxx

This is me reading aloud a chapter of a book like you said. I don't know if it sounds nasally? Or like nansality is coming? I do some voice exercises at the end that I saw on a Flaccid Dysarthria Youtube Video http://www.youtube.com/watch?v=B4oB179fUfA&feature=youtu.be I haven't even been able to get an appointment with my GP due to uni and them not having any Appointments.

Thank You
xxx