You said it's both hads, and symmetrical, and that you haven't lost the ability to use them. And from what I've read during my ALS period, it doesn't start all over. If you still have strength in your leg, then it cannot be from loss of nerves.
I remember I was checking my reflexes all the time and weather I could walk on my toes and heels. How are your reflexes? Do you have difficulty picking up things, walking on your heels or lifting your leg?
Hi frank. No no difficulty walking on toes or heels. My mouth still feels normal. Just sore teeth from constantly grinding. Twitching slowed right down. Left leg is smaller than right but no problems raising on my toes or walking on my heels. Reflexes were all prefect at hospital.
In fact i would say I've gained full function back in my arms. My hands are sore but not really weak anymore. Can still carry handbags and lift full milk cartons etc
But still could b very early
Also checked my babinski twice and absolutely nothing happen. No change in my feet or toes. 99% of patients test positive for this i believe
Well, I did not develop any ALS yet. Though I have a bunch of other issues.
Given what you've said, I'd say there's no reason for worrying about ALS, even if the feelings of weakness return. When you cannot lift something at all then I might worry about ALS (even then, there are many other issues that could be the cause... MS, but then it takes a while for the symptoms to go away - it doesn't just come and go from one day to the next, and again, it would be actual weakness, or blindness, or...)
There are so many things that can give those symptoms. Stress exhausts the body of nutrients and energy, so whatever issues one has, it gets worse with stress. Hypothyroidism (many kinds) can also lead to such issues.
So the best would be to just somehow drop speculating about ALS. I know I wish I had done that earlier than I did.
So have you heard anything yet?
So who told you that if a EMG is normal then u don't have it? Because my neurologist had done a EMG on my legs and he said that there was no since in doing the arms because ALS works in 4 limbs and he said that I didn't have ALS and prescribed me anxiety medicine, but he said that the EMG test will show something before u experience symptoms
So have you heard anything new?
I'm experiencing almost identical symptoms with no diagnosis yet have you heard anything
Mike what did you find out about yourself...What was your diagnosis?
Sootwillow what did you find out about yourself..I have the same symptoms as Mike... Twitching none stop, muscle weakness loss of muscle shoulder hip leg / calf and foot pain spams in foot ,calf and shoulders and front of neck..voice is nasely thick phelm and cough all the time like I'm choking ..I do not choke on food or liquid..I have had 2 episodes of ringing in my ears and another thing is I have electrical shooting pains in my left and right arm that goes to my wrist. I do have severe anxiety have had 3 panic attack in the last 6 months..I have never experienced panic attacks in my life..I am a 44 year mom of 7 and scared to death I have ALS ..MRI has come back fine and EMG the Dr. .said was normal but a orthopedic doctor preformed it...
Ozcar ate you still having problem ?/Did they diagnosis you with anything after your MRI and EMG came back clear. I have the same problems you have stated you have had.
Mike how are you these days?
Hi there, I know that i'm a little late to the party here but when I read your post I HAD to reply. I would very much like to get into contact with you because I have been living with these exact symtpoms since around 2010, so 5 whole years and going on 6(PLEASE LOOK TO THE BOTTOM IF YOU WOULD LIKE TO GET IN TOUCH WITH ME ABOUT THESE SYMPTOMS). I would like to get into personal contact with you because I do not wish to discuss all of my symptoms openly, but so far you have a complete checklist of everything wrong with me. I too saw my primary, a neurologist, a psycologist, a rhuematologist, a sleep specialist and so on and so forth, until I lost my insurance. Now I am basically disabled from these symptoms as well as my other autoimmune disorders. And No one cares because no one knows what's going on. Hell, they can test for my auto immune diseases but have NO idea what causes them or what I can do for them. So that's fun. I also have a sleep disorder. it was termed as DSPS, but I am not certain that this is a clear diagnosis, all I am certain of is the test results, which showed that my brain does NOT stay asleep during my REM cycles. Which is a serious issue leaving me with only a 67% sleep quality rating.
Now, In 2010 I started noticing memory loss, and slurred speech and slowed thought. As well as a persistant dizziness, lowered hand-eye coordination and the jaw and muscle fatigue began. At this point, I would pass out in odd places, fully unable to move. Sometimes this would last only a few minutes, other times hours. And I would cry and be helpless to move speak or control my eyes, as if i was experiencing locked-in syndrome.
Today, I suffer from all of these things, insanely bad anxiety, entire body weakness, INSANE TWITCHING ANYWHERE, often times for my in my calves, as in they will twitch VERY hard for a prolongued amount of time, say 40 minutes. Twitching in my eyes and a muscle in my ear, and in many other places. I get muscle spasms as well which are very painful. Often. At least weekly.
I have, despite having to take care of myself and going out at least 4 times a week, developed weakness in all of my body. This is coupled with fatigue and both of these things never fade. Although some days, of course, are better than others. Exercise is very difficult, breathing is hard as my chest feels like I can't get enough air in and I end up continuously yawning when i'm exercising, my doctors don't have an answer for any of the previously mentioned things of course as I always run it by them.
My breathing has been interesting. Again, chest feels heavy, can't fill my lungs. At night it often worries me if i am getting oxygen and that I might die, because I cannot even feel if i am breathing. I will discuss this later.
My balance and co-ordination has been horrible. I am bumping into things, bruising myself, slamming myself into walls, dropping things, forgetting things, hurting others. Every. SIngle. Day now. Because it is SO BAD now. Still, no one seems to notice and my doctors ignore this as well. i have had official "dizziness testing" with a specialist and they found NOTHING.
MY muscles are decaying and moving around is a task as if i've been laying in bed for years. I walk every single day for 6 months now and yet I cannot seem to shake this. Every muscle is tired all the time, and I have to take breaks often, even though I am the sort of person who will push themselves beyond their limit to finish a task instead of opting to take a break.
I have had a sore through issue since before 2010. No idea why. Doctors don't care, again. My voice is fairly horse but not enough to bother me. My thyroid is inflammed/swollen, so my neck feels tender and it is uncomfortable for even small amounts of pressure to be against it such as a collar or a sheet and I have to adjust for this.
Shaking and judders sometimes down my entire body but often through my head neck and arms. Uncontrolable. Spasms almost. Never had this issue in my life until recently. Now it happens to often that I forget it is not normal.
Chronic fatigue. Check. But of course this can come with a sleep disorder, again my doctors don't care about it and have NO treatement plan. Everything I do is drenched in fatigue. Going to bed i'm tired. Waking up i'm tired. Writing this i'm tired... my eyes feel heavy.. but if i layed down and slept for 10 hours, I would still feel the same exact way. If i did this for the next 10 weeks, I would sitll feel the exact same way.
Emotional Changes: I have become less self-consious, and more worried about hurting myself because of my proneness to accidents now. I often cut, burn, bruise myself every single day. Much care much be taken in anything I do, even simple thingns liek chewing beecause I often mess them up now. I never had this issue before 2010. Never. I was nimble as hell. So, I cannot say how this has influenced the following, but I now have depression, and even more so anxiety. The anxiety is sort of getting out of hand. I'm not OCD, nor do I have psycological tendencies but I get stressed out at tiny things, easily aggitatted with things that I used to be able to handle well, cannot push myself too hard mentally or I panic. Ah did I mention the new panic attacks. Last time I tried to get a job I kept getting reoccuring panic attackks until I backed down from it. Of course, this could be because I have trouble getting out of bed and making myself food(and often don't even eat because of this), let along working 8 hours a day for minimum wage, but again I do not know.
I often have a burning sensation that I consider to be a fever, however, my doctors never MENTION that I have a fever, so perhaps we are the same here as well. I feel hot feverish and just burning up. almost all of the time.
Now that it has been 5 years with many of these symptoms, and still passing out occasionally, but less frequently, and basically being locked-in, I have new issues. MY anxiety and depression have been getting worse. My heart races at night and I feel like I should check into the ER, but it is usually 2 AM and so I opt against it , having to tell myself, if I die tongiht then I die tonight nothing I can do at 2 AM. Heart racinng, cann't feel if i'm breathing or not. Entire body numbness. The numbness i would describe as about feeling ONLY 20% of the feeling, from every singgle nerve, as compared to what it should be. This is not always the case, but it is more often than not it is right now. It isn't cold or anything and yet I can BARELY feel my fingers pounding against the keys on the keyboard. And yet the nuerologist gives me a clean bill of health. lovely.
I too have a vitamin D deficiency. My doctors don't care, once again. They prescribed my walking in the sun every day 10+ minutes I do this as well as taking a D sublingual, since i cannot absorb well in my gut. I am also now deficient in Iron and Folic acid and B12. Supplementing all of these every single day.
Please, If you are still experiencing these things I would very much like to get into contact with you and perhaps we can join forces and figure out what is wrong with us. Please let me know how I could contact you. Thank you. Incase you don't have a good means of doing so, I will share my skype name, as it has no personal information attached to it , but if you do not use that please leave a way to get in contact with me if you prefer another method. Audaerin
Hi, I am not certain what triggers an email to you but I wanted to be sure that you knew that I left you a reply and wanted to get into contact with you. Thank you.
Hi Nowhere Boy, you sound lost and confused. I have pins and needles over all my body 24/7. In the last month I have lost the strength in my ams and hands. The soles of my feet are very sore. Walking or standing I stumble, feel clumsy and out of ballance. I get angry easy, confused when speeking, memory lose. Just found out I have Osteoarthritis all through my spine and further tests to be done and age is 55
Neale.
NowhereBoy, how have you been doing? Can you update us on your diagnosis?
All the best.
Hi there, I am glad you are not alone with the same symptoms. I have osteoarthritis through my whole body, severe pins and needles all over 24/7, sensation like something is crawling under the skin, very weak in both arms, out of ballance, stumbling and feel light headed when walking and standing, lack off sleep, go to bed feeling sore and wake up feeling worse, lose of mussle strenght, coordination is out of order, confused when ansering a person when having a conversation. Newrosergin meeting coming soon.
Arthur I have almost identical symptoms the lightheadedness unsteadiness can't follow conversations ect and I don't have any answers no doctor can figure it out its so stressful...
Hi Stroud. Also i have 6 bulging disks in my back crushing nerves. Went to see a nerosurgine in January 2016. At the time she could not find the cause of my symptoms because they were symptoms of diferant ilnesses. Had a MRI done on brain and spine. Found white mater in brain and bad osteoarthritis in my spine. Go to see nerosurgine in may. Getting bad cramps in hands and arms printing this. drives you crazy not nowing what you have. Do not worry you will have us to guide you through this. Cheers Arthur.