Help for Newer People: Need Advice

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ValgerAce59

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Hi all~~ It's just me again. I feel so bad starting a new thread, I just feel like I should be done bugging you guys with questions, and actually starting to try to help the newer people. You guys are always so reassuring, and it's easy to rely on you too much I guess. Thank you though for all of your incredible help! BUT....I was wondering....I think I've read on here before where als is not a disease of the sensory nerves, so it doesn't really involve pain, is that correct? I'm wondering cause I've really been struggling with the knee pain, and sometimes ankle pain, and now it's a foot thing also, where the heel of my foot is very painful at times. I guess I wouldn't describe my problem exactly as weakness, but if you were to look at me sometimes, I think it would sure look like that. I have trouble getting out of cars that are too high or too low, I have trouble climbing stairs, but it feels more like some type of joint issue, not as much as muscle weakness. Although, I do definitely have trouble getting up from certain positions, like I just don't have the coordination or strength anymore. It's more of a stiffness and pain thing, though. I've tried to buy better shoes, and that helps a little, but not that much in the long run. I am in a hurry alot, so I put on slip on shoes that have kind of a heel, and after walking in those for a while, I'm usually in a lot of pain. And, my knees have been getting worse as far as stiffness and pain. Is this a common thing with als? I find myself getting into a vicious circle, cause I like to lay around more since it hurts to try to do too much, and then I get more out of shape, etc. I did go bike riding with my daughter last week, and that was pretty easy for me. My knees didn't hurt doing that. It's more like difficulty climbing stairs, and I just feel like I move alot slower than I used to. I hate when I have to park far away for the store, for example, and walk that far, it just is uncomfortable. We have a trip coming up in June to go to Disneyworld with the family, and I honestly don't know how I'm going to walk around that much. The thing that worries me about als, is that I've been twitching for a year now, but in the last year, I swear, I feel like I've aged 10. I feel in much worse shape than I was last summer. This could be just due to the normal aging process, I guess, but it just seems coincedental. My brother had double knee surgery when he was only about 40, though. I've always looked and felt young for my age, and so I hate this feeling old thing. I'm 48, but have always felt like a kid, and just been very active with my kids. Anyway, thanks so much for any insight on this. You guys are the best, and I hope I can help someone else out with something I've already been through. Thanks, Val
 
Hi Val!Hon, I have aches and pains in my joints etc and I am only 39, I think for me its just part of the ageing process! I had a wonderful first time visit with a very respectable neuro last week here in Ballarat. He looked me in the eye and said after 7 months of twitching Sandra you would have some very serious weakness issues going on. He said he could tell when I walked in I was ok. Val, the anxiety of this condition can really eat away at you. I had a couple of months early on where I was here but I was not really here for my family if you can get what I mean. Sensory issues are not a part of *** either. My kids have dreamt of being able to go to Disneyland Val, how lucky you all are! Please feel free to PM me anytime, after a year of twitching you really are fine Val!!Take careSandrax
 
Sandra, Wow, thank you so much, I really could relate to everything you said! I really, really know what you mean about being here, but not really being here. And, the ironic thing is that I just felt exactly that way just a few minutes ago! My older daughter is attending NYU, and she called RIGHT as I was showing my older son a dent I found on my outer calf. So, you know that feeling, the darkness, and the butterflies in the stomach, and the obsessive thoughts? Well, I totally had all of that, and then the phone rang, and it was her! Obviously I had to TRY to cover up my feelings of what I was going through at the moment, but your own kids always know when something is wrong. We had an ok conversation, but it didn't feel the same as usual. It was slightly awkward, and I'm sure it was because of my distracting thoughts of, "I definitely have atrophy". The thing that worries me about this dent is that, I remember I found a smaller dent on my outer right calf months ago, and I did plenty of comparing and checking to see if there were any similar dents on the left leg, and there were none. So, this definitely isn't something I've had for a while, and just didn't notice. Since I definitely compared, I know I didn't have this particular dent months ago. The strange thing is, though, and I wonder if anyone can relate to this, the dent that I found first on my right calf sort of seems to come and go, and be worse at times. So, this one on my left leg also seems to follow that same pattern, where sometimes it's really noticeable, and other times, not as bad. I first found this current dent on my left leg a few weeks ago or so, it was just that tonight it seemed very prominent. The scary thing about atrophy, is that it is either there or it's not. It's not like twitching, which can occur from your peripheral nervous system, but atrophy is unmistakable, and a bad sign, right? Thanks for saying that a year should make me feel better. I always thought I would feel better at a year, and I sort of did, but it's easy to fall right back into these dark places. At this rate, I wonder if I will ever feel better. My daughter is having a play this weekend, and I wanted to fly up there to see her in it, but it turned out that I couldn't do it, and when I obsess over somewhat of a new thing like this, I worry myself to death about how I should have made sure to fly up there to see her, since if I do have something bad like als, you never know when I won't be able to travel, and then I'll regret not taking these important opportunites to go and see her. Anyway, thanks for letting me ramble, and thanks so much for helping to reassure me!! I swear, it really does help, even though I am spazzing out right now! Thanks, Val
 
Hey Sandra, your post really helped me. I am 7months into twitching too and my GP told me the same thing as your doc. I have been seeing him monthly for my Hashimotos thyroid issue and I expressed my concern at my last visit about my twitching and **S. He said you look too good. After 7 months, you would have definite clinical signs. I guess we have to trust our doctors and stop obsessing. I know...easier said than done.Thanks again for posting.Linda
 
Pain is unfortunately a part of my profile too, my muscles just seem to tighten up and cause pain all over the place, given the choice between pain and twitching I will take the twitching.
 
Hi, I get lots of pain in my joints and muscles and I'm pushing 40. I'm sure that my BFS and essential tremor has a lot to do with it. I recently talked with a person who has many of the same symptoms that you do and she went to see her GP. He sent her to a specialist that diagnosed her with fibromyalgia. It might be worth looking into. She got put on meds and now feels wonderful!
 

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