Karen, please accept my apologies. I am grateful for your input. I'm very sorry for the way I spoke. It's only because I've been terrified and have created extreme anxiety over this. I didn't understand that you all are bravely battling this disease and you're making a great legacy by helping others on this forum. Thank you for doing that. Respectfully, Lisa
That is okay, I cannot post on social media about my husband as he has only told a small group of people so far. I am sure as time goes by I will get to know everyone and it will be like a family. So I thought I would start reaching out slowly. Thanks for your advice.
ed my muscles would fatigue more easily then normal but my weights were pretty similar as before.
Fast foward to this summer i have gotten tests for everything from autoimmune-deficiency’s-thyroid-lymes you name it. I googled why symptoms and saw these could be from als. The last month i have had severe muscle twitching everyday. Muscle pain and tightness throughout my body. I also feel as if Im not balanced when i walk And my hands are clumsy. This only happens after i began to fear als so it could be anxiety. My neuro did a clinical exam and said I passed with flying colors and my pcp agrees but they can’t find anything else. I️ am wondering if you think it’s worth pushing for an emg?
Thank you so much for reading god bless you and all you do
Hello Karen, I have read countless posts on these ALS forums and for one wanted to thank you for being so knowledgeable and helping people. I was wondering the best place to donate to ALS research as I plan to do that tonight.
I would like to share my worries with you and see if you have any thoughts on them (I really do value your opinion).
It all started last year where I lost control of the muscle of my anal sphincter as it was in a constant spasm. It lead to constipation but I learned to live with it. During the year I️ began to develop muscle stiffness in my back and my neck that did subside for a little then came back and still hasn’t left. I have to crack my neck and back countless times throughout the day. I also noticed during the school year that I a few muscle twiches when i would lie down before bed but I ignored it and didn’t think much of it. I also would get random bouts of fatigue as if I had a flu. I am an avid weight and have been my whole life and notic
Just checking in with you. I hope you are holding up. It really is too much to bear isn’t it? Last I heard you are still walking. I am too but I need a wall at the very least, or two canes but a walker is best. Some days I think a wheelchair would take away a lot of unneeded drama - you can only come close to falling so many times before you decide to stay seated.
That would be fun. Both of my parents graduated from Southern Oregon as did my step-daughter so my husband and I have enjoyed the area frequently. My stepdaughter actually lived in Talent while finishing up school.
Are you getting treatment in Southern Oregon or are you coming up to Portland for clinic? My mom sees doctor Goslin at Providence Portland and thought it would be nice to meet you guys in person if you were there at the same time. I hope you are doing ok.
I am so sorry I missed this message. I am relieved to hear you have a slow progression. I am glad LNM dominance can be slow too. I am happy with Radicava, but I cannot say for sure if it is helping. But doing something feels good. Conceptually, sopping up free radicals in my brain seems wonderful. I wish they would do some wider drug trials to get a more definitive result.
I tried to take Riluzole but I get an allergic reaction - phlegm in my throat. So I stopped taking it. My wife has enough trouble sleeping without me coughing and clearing my throat!
I was in Medford many years ago, but not much travel lately. If you ever find yourself in Vancouver, BC I would extend the same offer. Maybe we could get Shiftkicker Fiona too!