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Very very nervous … dont know what to do
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My educated guess is if a muscle us responding then it’s dead no matter how small and atrophy is atrophy. To me this is als. Buy i can still walk on toes . Myvthinking is that this is going to escalate and is ALS…
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John also if I’m experiencing some soreness in biceps and shoulder areas and I just had a clean upper EMG then it cant be als related right ?
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Probably.
Like I said, I do not think anyone here can tell you yes or no on this. That must come from a trained professional. We can, however, help give you comfort and hope. This is much better than trying to diagnose what ever it is that is causing this over the internet.
Friends forever, but not a doctor.
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Dagmar, my left leg feels more sore and a little weaker. I can still stand on toes but.
Very frustrated and don’t know what to do about it. Do I accept neuro ” no als ” and continue to think its going to get more sore and worse. I’ve been walking about 30 min a day every other day but I’m scared to continue that’s its going to get worse. Family tells me its all from my stress and it dosent look that bad. Everyone I show the atrophy to can clearly see its a pretty big difference.
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Russell, I can only share what works for me and how I feel day-to-day: I have had ALS for 11 yrs now, and I haven’t had atrophy or feel sore all over. I still walk with a rollator to help my balance and am involved in daily projects.
I believe you are caught in a mental cycle of expecting the worst and reacting to every twitch and are having “left-side-right-side comparison-itis.”
Let me ask you this – – what if the neuro says you have ALS? Will that suddenly make today or tomorrow change? No. Today (and tomorrow) you will have the same body, family, neighbors, and days on the calendar. You are (and it is common with everyone) projecting your thoughts way too far into a future you don’t know will even happen.
Meanwhile, muscles atrophy when they do not get bloodflow and adequate movement. Your 30-min walks every 48 hours are not enough movement for your body. Walk daily, maybe 15 -20 min. Do standing reaches, sitting stretches. I feel stiff when I don’t exercise, once I do, my body feels and moves more relaxed. Walking and mild exercise will help your body, not “bring on ALS faster” as you might be thinking.
Go to your doctor visits. But ask them to help you get over this cycle of “disaster thinking.” They may recommend a good therapist that’s on their staff. We’ve all experienced this – – and there are solutions to help you feel less stressed.
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Dagmar, ty for your wisdom. If I told you the stiffness and aches and rigidnees of my body right now , the movement disorders i feel when I reach for something now I even watch how I speak cause I fumbled some words over the phone yesterday. My wife also trying to calm me down by telling me I can’t have every sympton know to als on one period of time. I know lower emg had one problem but the upper emg i was told was trxtbook good. I always thought I was an intelligent man and I have let this consume me to the point that I actually feel I have this. I will keep fighting my mind and look for some stress relief.
Thank you Dagmar.. God Bless you
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- Once again, ty John . I don’t know how I would be handling this with out you and Dagmar. I know my stress is out of hand. Even stared fumbling words out of my mouth which has me thinking every time I want to talk. I have never in my life been so consumed that I have this. I grew up in Brooklyn and queens ny. My wife reminds me a was a pretty tough kid back in the days. Lol
- This John , has brought me to my knees . I just hope I can mentally rebound and hope this is all ok.
- Thank you again my brother. You are an angel as this Forum is God sent….
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Russell, my heart goes out to you with what you are feeling and going through. The time of waiting, seeing the changes in our body, going for tests and exams, hoping and praying for answers, answering everyone’s questions, just takes an enormous toll. We share a birthday month, as I turned 66 on May 2nd. I don’t even like thinking back to my birthday one year ago, as it was only a few days before I was taken to the hospital for another fall. I spent 2 months in the hospital and rehab, all with no diagnosis. What I was told, leading up to my diagnosis of ALS, from several in the medical field was this….”Don’t worry, you don’t have ALS. That would be the worst thing you could be told you have.” So when I was finally diagnosed at the end of October, I was shocked, yet I was relieved to finally know what was causing all of my difficulties for over 10 months. When I read how anxious and afraid you are, I really feel for you. I went through many ups and downs, and I found it really challenging to stay optimistic and not let my worries take over. Give yourself a break and don’t feel bad about how saying how overwhelming and scary this time is. I think it’s normal and to be expected. You are doing the very best that you can, to handle a very tough and incredibly long period of wondering and waiting for an answer. We know our bodies aren’t “right” but no one can pin it down to exactly why. I spent months saying that my walking didn’t feel right and even though others would tell me I was walking fine, I knew I wasn’t. That led to a few falls and increasing weakness. I too have spinal stenosis and in the past had a spinal fusion. Though everyone thought my back was the real issue, somehow I knew it was more than that. I’d say just take it one moment at a time and continue to do what you are doing, which is the very best that you can. It’s so good that you are honest with how you feel and reach out to all of us on this forum. This site is the very best and it is the only one that I read daily and give input. I think it is wonderful that we can express our feelings, both the good and the bad, and say how we really feel without being criticized or told we shouldn’t feel as we do. I am comforted by what everyone writes and it truly keeps me going. Thank you for telling us how you are and please keep it up. We are all in this together 🙂
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Thank you Carolyn. Yes I’m going crazy. I’m trying hard to stay upbeat. Looking at my physical problems such as a thinner left leg and the emg coming back with a small muscle not responding. The neuro telling me no als . Just nerve problem from mild stenosis. Im having a hard time buying it. I do hope he’s right. Also he did an upper emg to appease me. Which he said was textbook good . No als
No falling down but I do feel a little weird too when I walk . Everyone says im walking fine.
I noticed 3 weeks after my initial finding of my leg i notice a little atrophy in my right gluteus. My wife says its nothing im losing weight that’s all.
Yesterday for the first time I fumbled over some words over the phone and now I’m so conscious of the way im talking. I feel my hand and arm coordination is off. But I took an upper emg and it was good so it can’t be right?
My wife and friends are telling im just overly stressed which I am and have been for a while. I’ve been eating ,sleeping and thinking I have this. I get to a point where I just don’t know what to do. Keep praying all my symptons aren’t real. I feel that I have every sympton at once. Bulbar , lower left limb. Upper right hand. Awkwardness. I mean can I have all this at one time ????
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Russell, I think what’s most important here is that only you, the person feeling all of these things, can truly know that something is off. I know that others have our best interest at heart, and are only trying to help, but what you feel is real. I think it’s possible to have all of these issues going on at once. We all know our bodies so well. I had most of the symptoms that you have, as I waited for answers, but I was fortunate to not have the bulbar struggles. I expect that is coming at some point, and I actually am constantly thinking it will start at any moment. How could we not be stressed as all this is happening? I think it’s pretty impossible for you not to be stressed, as it’s been going on for a long time and you are really doing all that you can to get it figured out. I even dream about myself as I am now. I think it shows that even our unconscious self feels the reality that we experience when we are awake. Very often I realize that my only option is to pray that I will be able to handle each moment in the best way possible. I know it sounds strange but I believe this is all meant to happen at this point in my life. I accept it but I wish it weren’t this way. It would be more concerning if you dealt with your worries by not talking about it. You need to say just how you feel, to those who are willing to listen and of course those who truly understand, because they are in your shoes. You are in my prayers and will continue to be.
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Carolyn , what symptoms did u have and did u have emgs done ?
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I started with a fall, where my legs just buckled. It wasn’t like I lost my balance or tripped. My legs just gave out. I then noticed my gait wasn’t quite right, and as I was walking into a store, I just felt I wasn’t walking as I usually did. I was always a very active person, rarely sitting down, always up and doing something, so this didn’t make any sense. I felt more tired than usual and overall I just didn’t feel as strong. I then noticed when I was driving and turning the wheel to pull into a place, I wasn’t turning the wheel as well and I started to hit a curb. It was like my arms weren’t as strong. Then I really had a scare, as I stepped on the brake, as I approached a red light, and almost couldn’t stop in time. I knew I was hitting the brake as hard as I could, but that “close call” never happened before. I knew something was really wrong. In total, I had 3 EMG’s. What is very strange is that my first two, done at the same hospital, only tested my legs and feet. My results showed neuropathy in both feet, plus weakness in both legs. My doctor didn’t think anything of these results and had no answers, as to what the cause of this was. I then was evaluated at Penn Hospital by the Movement Disorders Clinic. They looked at my EMG’s, plus MRI’s and said while I didn’t have a movement disorder, they thought what I needed was to see a Neuro-Muscular neurologist. They had no idea what my diagnosis was. I decided to go to Jefferson Hospital in Philly, as they are known to be excellent in neurology. That was definitely the best thing I could’ve done. The neuro-muscular specialist decided I needed another EMG, which she herself would do. That EMG tested all parts of my body, right up to my neck, and it lasted over 2 hours, much longer than the previous ones, which were less than 1/2 hour. She finished and said she was pretty sure she knew my diagnosis, but wanted to consult with her colleague first. She said she’d call me the very next morning, which she did. Even though it was a Saturday, she called and said she was positive that I had ALS. She was very compassionate and kind as she told me, which meant everything. I continue to have neuropathy, significant weakness in both my legs, trunk and upper body. I use a walker full time, and a wheelchair for distances. I wear leg braces and am waiting for custom orthotics to enable more stability and proper foot positioning, for when I walk. I am considered a high risk for falls, but I just try to think before I move and take everything slow, so as not to lose my balance. I also have weakness in my arms and trunk.
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Carolyn. I prayer for you. Thank you for your help. I hope i can stay calm . I had booked an appt with the als center in stony brook long island as a backup for May 24th. Im kinda scared to go. My family and friends are saying you got a dx of No als from your gp and the neurologist and you have a followup in 3 months. Just stay with that. But I’m also scared if what the als center would say. Do I wait the 3 months and go to my neuro and see what progresses or do I go to the als center and stress out even more the till the 24th… dont know what to do ?
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Omg Carolyn, I’m sorry. I didn’t feel any weakness just looking at my legs brought me fear. My ortho noticed it and told me to see neuro. Neuro said its not that bad. Just that right leg had more fat around the upper ankle. I wish I could send u a pic. It looks much worse to me. Now after emg of my legs .tech tells me I’m still strong down there even with one small muscle not answering. He told me not als. I can walk on toes and heels still but scared that leg will give out. My legs feel shaky each time I walk but can that be due to my nerves. Upper body i can still pickup some light weights but I feel shaky on top too..was way over weight for my height. Just loss 3o lbs . Shoulders feel achy with fingers. Emg was good on the upper..
I just don’t know ….
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Thanks for your prayers Russell, they mean everything. I don’t have twitches anywhere yet. I have mostly felt weakness and imbalance in several areas. Honestly, if it were me in your shoes, I would go to the ALS clinic if they agreed to see me. I think I’d see it as it can’t hurt, and it would be a way of having those who are experts in the ALS field take a look at me. Though I’d still be anxious about what they would say after evaluating me, I would feel better that I tried every option of figuring out what was wrong with me. Just go with your instinct and you’ll make your very best decision and it will be the right one.
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Carolyn. I did go to the Dr . Another neuro who is director of the ALS clinic in stoney brooke long island. He didn’t give me much of an exam. A brief clinical evaluation inehuch he had a student doing most of it. I showed him my previous emgs . Which had the abnormalities on it. I showed him my severely atrophy leg . He said No als. His exact words 101 % no. He didn’t keep my paperwork or anything. He didn’t want to see again. And I can’t get a reason as to why my leg is like this or why the ankle hurts when I walk on it. Told him about my right gluteus smaller. He just said I need to relax.. so much for a second opion from an ALS director . Dr Rahman Pourmand. I guess il wait for my next visit with my neuro. Should shrugs producing tremors in shoulders. Can’t tell if its my stress or not…
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Russell, what’s wrong with accepting the neurologist’s opinion that it is 100%, not ALS? And, what’s wrong with accepting his recommendation to relax? It sounds like you won’t give up until you find a doctor who tells you it is ALS. hmmm…
Learning to relax and practicing relaxation & stress reduction techniques will be very beneficial for you – – whether you have ALS, or not.
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- Dagmar. Seeing my physical problems arising. And the Diagnosis they give me is nerve damage from mild stenosis in my back. I know that DX has been proven wrong in many cases. And 2 neuros confirmed no ALS off of the same emg.. im just hoping there right.. but I understand totally what your saying. I just keep trying to get a hold on what is actually going on with me. Drs don’t seem to give you an answer .
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A wise Physicians Assistant told me that if a doctor tells me what it is not, he/she has failed to tell me what it is. That is the crux of the issue, because what it is is much more important than what it might be.
Keep asking questions. The squeaky wheel gets the grease.
Education is also king. Find out what mimic’s ALS, because you might find what you do have that way. A lot of things cause atrophy.
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Well John , I took your advice and becoming more pro active ( squeaky wheel) to find out my health. I went to the orthopedic surgeon who did all my mris and he referred me to the neuro..
Well today he read the EMG of the neuro and said to me that there’s no stenosis or pinched nerve in my back that would be causing my problems. I gotta bad feeling. I asked him what should I do next. He said he didn’t really know. I had this sick feeling in my gut. He couldn’t really tell me why I was feeling more pain in atrophy leg. He did say he would try and give my neuro a call and then call me back but I don’t know. I guess now I have to just sit and wait for next appt in August.
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Good job. Now keep at it. Questions get answers and persistence gets attention. Don’t be a pest, but also do not be a wall flower. Remember that part that I talked about, watch and wait. Sometimes that is the only thing that can be done. I wish it were like Star Trek where Dr McCoy could wave his scanner of you and give you an instant diagnosis! In the mean time, relax and enjoy life. If it is ALS, the practice is good for you, and if not, even better!
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Hi all,
Don’t know why I I’m still getting stiffness and aches in my shoulders arms hands and legs. Been going on for awhile.seems to be a little more. I’ve tried muscle relaxes and zanax. Can’t de-stress my self . When I try to relax my body u feel a little twitching go on and some internal vibrating in shoulders and arms. Not alot. Its been 6 weeks since I noticed my atrophied leg and gluteus. Can this be happening so fast. 6 weeks. Next appt with neuro is Aug 10th. Which would make it 3 months since I seen and had my EMG. Just trying to hold it together and keep my sanity.
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Mindfulness exercises to relax. Walk. Take the dog with you if you have one. Realize that stress is a mental construct of our own making, and as such, it is a mental construct that we can control. Silence your mind, and concentrate of relaxation. Yes, you will still feel the fasciculations, but do your best to ignore them. Imagine your body…starting at your feet, then your ankles, your calf, knee and thigh. Slowly imagine each part, step by step, relaxing. Imagery helps so think that a string is being pulled, very slowly, out of the top of your head. As it leaves your feet/ankles/calf/knee (etc), each part of your body is totally relaxed, flaccid, and motionless. As the relaxation spreads up and up, there too goes the stress. All the while, shut down all of those thoughts that seem to be a never ending stream of confusion. You are in control and can shut that out. The more you do this, the better you will get at it. Eventually, you can effectuate this at the drop of a hat, sitting or standing or lying down. Be mindful of how your body feels, recognize it, and once you have found it, you will want it more and more, so learn this technique.
Silence truly is golden.
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John, I have an appt with another neurologist Wednesday morning to see if I can get some more answers as to whats going on with me. I will bring my existing emg reports and mris . Also I was thinking of bookng a session with a neuromuscular massage therapist to maybe reduce the stress upon me . Which has been mighty.
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Second opinions are important. Think about action and reaction. How you respond to your environment and stressors is a big factor in your happiness. Something happens, and your response to it is what brings that stress. Knowing the results of how that works gives you the advantage to control it. Knowledge is king. I hope that helps you because stress clouds our minds and gets in the way of thinking clearly…hence action, and reaction.
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