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Gmorning,
I’m a 60 year old male who’s on the edge.
While attending a orthopedic surgeon fir my back and after taken many scans of my spine I was going to meet with my ortho when I noticed my left leg ( calf and ankle area were considerably smallercthen right leg. My hands and fingers were aching a little .I brought it up to my ortho n he seemed a lil alarmed n said it looks like muscle wasting. My ankle was and is a lil sore when I walk .I kinda got very scared. He said I needed to see a nuerologist. I went immediately to a nuero who gave me a office visit exam such as walk on my heels and toes jump and pushed and pulled at my legs.
He said I felt strong but he’s giving me a emg on Tuesday. After this I went to my GP just to let him in on wats going on.
He said my left leg was good it was my right leg that was swollen . (Edema ) he told me to remain calm its nothing.
So he sends me to Vascular dr for checkup on veins . That dr says I have no edema
And he dosent know why left leg is thinner so now I’m back to square one and really frightened……
Who do I believe and do i have ALS ??
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Russell, you are not alone in feeling anxious and worried – – so many of us have felt the same way – – it’s that strange, dark time period between noticing symptoms, seeing doctors and… waiting for a diagnosis. Our minds jump all over the place and imagine all kinds of scenarios.
Right now, your physicians are the ones to rely on. It’s tempting to go online and self-diagnose or hit social media and ask total strangers to weigh in. But that only leads you further down the rabbit hole.
I know it will be difficult, but do try to relax and put your worries into a holding pattern. We’ve all presented our doctors with such a wide variety of symptoms, that makes diagnosis far from an easy “slam-dunk.”
Eckhart Tolle is a teacher of mindfulness and a best-selling author. He is a German-born resident of Canada best known as the author of “The Power of Now.” And, I find listening to his short YouTube lectures helps keep me focused on my awareness of where my thoughts are going and my awareness of the present moment.
Here is an excellent 12-minute video in which he explains negative thinking, how to stop it and, how to return your awareness to the present moment. And he does it all in a humorous way!
I suggest you focus on “now” not what-ifs. We can give you encouragement and support. Again, we’ve all “been there.”
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Yo, Russell! My symptoms began as cramps and twitching in left leg and it was a couple of years before I noticed I could no longer articulate so well on my guitar. I went back to the medical center and waved my arms in the air and raised my voice and finally was sent for an MRI. Still no definitive diagnosis. Now after four MRIs by a succession of four different neurologists I have a positive diagnosis that I could probably have reached on my own with a little research. My ALS is an extremely slow variant. I am 12 or 13 years into it and still able to walk a little. But what I want to say is that the advise you read above is correct: take it easy. There’s no use being upset or anxious. ALS doesn’t respond to that. As your diagnosis is new, if in fact it is ALS, I point you to the abstracts of current research in which scientists have gotten to the root causes of this disease. Cures are forthcoming. You may be at just the right time to beat it. We are all for you!
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Worry is only going to cause suffering. I opt out of suffering personally. I am 62 now, so we are fairly close age-wise. My body is changing, again…not the first time. ALS is just another thing put in front of me that I can deal with. They say God never puts more on your plate than you can handle, so I have faith that I will get through this. Things are just the way they are supposed to be. I think that Ecclesiastes tells it like it is…read it sometime with an open mind. It truly is amazing.
ECC 1:16-18
I said to myself, “Behold, I have grown and increased in wisdom beyond all those before me who were over Jerusalem, and my mind has observed a wealth of wisdom and knowledge.”
So I set my mind to know wisdom and madness and folly; I learned that this, too, is a pursuit of the wind.
For with much wisdom comes much sorrow,
and as knowledge grows, grief increases. -
Hello Russell,
I’m sure what your are experiencing in your body and what different doctors are telling you is confusing and frightening. I agree with our other members, try not read to much into anything yet and focus on what you do have control over. Work with your doctors and breathe! ALS mimics so many other illness and it takes time to rule things in and out. Although there is a wealth of information on the internet, it isn’t always our friend. I’m one that researches entirely to much, so I speak from experience. As you work with your doctors know that our online community is here to be supportive. For now, if you can, focus on what is good in your life. Enjoy every little thing. I love the Mindfulness suggestion! I’ve found that to be very helpful.
Amanda
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Tomorrow I have the emg scheduled. I am so scared. I look at the atrophy of my left calf n leg and I start to cry. I don’t know why it’s like this. My voice pitch has changed . I’m falling apart. I know my spine is good no lesions . No malnutrition no nothing. What else can it be but ALS… I wish i could down
Load my pictures of my legs.. SMH
Very very frightened..
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Hi Russell,
I’m sorry you are feeling so nervous and frustrated. There is no one definitive test for ALS and there are other conditions that have similar symptoms. It often takes having a lot of tests done and several months to get a diagnosis of ALS. I hope you are able to remain calm. I know this is easier said than done! I agree that you should work with your doctors and that worrying won’t give you answers about what is causing your symptoms. Best wishes to you!
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Hi Russell. You may be jumping the gun on the possible diagnosis. While there is definitely something going on, it may or not be early symptoms of ALS. When I first experienced symptoms a year ago I noticed a weakening of my left side, plus a very slight problem speaking. I also began to feel tiny little twitches on my left arm and leg, which slowly increased and became more pronounced over the following weeks and months. After seeing four different specialists and having every medical exam known to man, I was finally sent to a neurologist who instantly suspected ALS but ordered a special exam (can’t remember the long name) that confirmed his suspicion. I hope and pray that you do not have ALS, but some other medical condition instead that can be effectively treated, if not cured. Let’s not jump to conclusions and hope for the best, my Friend.
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- Thank you everyone. My emg is tomorrow. My 60th birthday. How ironic. My stress is tru the roof. I guess if I didn’t have the atrophy in left leg (calf n ankle) I wouldn’t be so nervous. I had initial meeting 2 weeks ago with neuro who had me walk on my toes and heels . He said I felt strong on top and bottom. But now I notice that my leg seems even smaller and my walk a little funnier. I think I’m favoring my left leg. I don’t know anymore . Also my voice sounds funny over past week.
- Will the EMG I receive tell me if I have als or not ?
- Thank you so much everyone for allowing me to vent on your shoulders..
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Good luck. Pray for the best, prepare for everything else.
EMG will help rule out other causes. I wish I could say that I would rule in ALS, but that would not be the truth.
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Good luck Russell,
It often takes upward of a year to reach diagnosis. There are ALS mimics and the diagnosis is one of exclusion of other possible causes. Takes sometimes multiple EMG and other tests. No one here can read your post and assume to know. Just bear with it and make sure you truly get to a MND specialist. In this forum , you will find people with ALS not those without it. Just hope for the best but your fear is only natural.
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Thank you everyone, I just came home from my emg test. It wasnt pleasant. The dr who game me test said there was one abnormality. He said one small muscle in my left leg the one that’s smaller was not responding. Other muscles were receiving electric. He said low but they were receiving.. he said only one abnormality is not that bad n wait to speak to my neurologist on Wednesday. I was kinda praying emg would be clean . Now I’m really in the als rabbit hole . Deep .. feeling depressed and really scared .. seems its all going to point to ALS
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Fibrillations and fasciculation potentials are important for ALS diagnostic. I got these in 8 out of 10 test sites in my last EMG. These show Neuron death. Increased MUAP’s show re-innervation, also important for ALS diagnosis. These show neuron death, and then the sprouting of new synapse into denervated muscle. It is not a definitive diagnosis of ALS, because these can be caused by other conditions that mimic ALS. It does show the diagnostician what to check for, other conditions may be the cause. If they find another condition, you are blessed by not having ALS. Most others can be treated effectively, so cross your fingers.
The NCV (electrical shock) test is mostly testing sensory nerves (i may be partly wrong on this). IF you have sensory issues, it is not likely that you have ALS because it does not tend to affect those neurons.
(note that I am not a physician, I just read a lot of info on this topic to be informed on my own condition, my comments are only to open the door of understanding)
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- John thank you for answering. I’m completely numb right now with fear. I’m being sent for an mri of brain. Do I pray for lesions?
- The tech dr who gave me the test just said that maybe a nerve was being compresed from my spine down to my left leg but that sounds like a stretch to me. My spine mris n xrays were all good . I asked him , so this was not a clean emg and he said well you just had 1 abnormality with a small muscle. I mean isn’t that what als onset is about ? Is this why my atrophy is in my left leg and will get worse..
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Hi Russell,
Lots of info can be collected with a brain MRI. Do not fear this, it is possible that nothing shows up, or something other than ALS can be diagnosed (which is a good thing because all the other conditions are either treatable or not terminal).
Remember that the brain MRI cannot diagnose ALS. It can only rule out other causes. On the sideline, it can tell if there is similar damage to the corticospinal tract that controls motor neurons (note that this does not implicitly ID ALS because other conditions can cause the same thing).
The tech you spoke to probably referred to possible radiculopathy. This is where mine began, when the wrong exercise in therapy crushed my L4/5 nerves to my left leg. The foramina, where the nerve comes out of the spine, was the actual cause of the damage because it was crowding the nerve due to osteophytes (caused by arthritis of my spine). The result immediately caused drop foot, and over 24 months it was diagnosed as permanent partial paralysis of the sciatic nerve. So there is a large body of study on this and that is not ALS.
Abnormal results in 1 muscle is not a bad thing. Hold on and stop worrying. I think Max Ehrmann said it best;
And whether or not it is clear to you, no doubt the universe is unfolding as it should. (Desiderata, 1927)
Be patient and do not let your imaginations destroy your peace. We deal with these things one day at a time, no need to rush into tomorrow because we have no idea what lies there.
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<li style=”text-align: left;”>John, just received my brain scan .all clear. I was kinda wishing for a lesion or something. Now I’m like there’s no ms, my spine mris are all clear, no metallic poison in blood.
<li style=”text-align: left;”>It has to be this. Losing nerves on a small muscle and also size in that leg. Hands that dont feel right and ache. Mewting with neuro on Monday morning. Very scared. I don’t know what else to think. So frightened right now. Omg -
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Living in the past or the future causes this fear. Just live one day at a time. Whatever is going to happen will happen no matter how much you worry, or dont worry. That stress is useless. Be happy, relax, and celebrate life.
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The incidence of ALS is 1-3 persons out of 100,000. This is a very rare condition. Nobody can say one way or another what is going on, so the answer is that I can’t say either way.
I would recommend patience, watching and waiting. You can be your own worse enemy sometimes. All of this stress and anxiety you have may be for naught, and this may be an inert process that clears itself up, or something that is much less than a terminal condition. People rush in these situations, and that is normal. You want to hurry up and figure out what is happening to you. Slow down. You have seen multiple professionals up to now, and none of them have told you to worry about anything. Your EMG showed abnormal results in 1 muscle. That is not evidence of ALS because the guy did not say anything about acute denervation and reinnervation. So that’s a strike. You also had negative results in your brain MRI. Strike two. At this time, stop worrying. So far you look good.
Nobody but a professional can diagnose this problem. But, if I were you, I would slow it down and relax. Nothing at this point is evidence of anything. Your muscle atrophy can be caused by at least a hundred different reasons. Did you know that everyone has one leg smaller than the other? It is natural. Same with your hands and feet (my right hand and left foot are larger then their counterparts). Relax. Enjoy life and let the professionals do their jobs. Driving yourself crazy will not help anything, but will actually hurt you because it projects into every facet of your day to day life. It is a negative energy and people can read that in you. So be happy. No diagnosis exists. That is GREAT news if you ask me! If you want to worry, wait until you have an affirmative diagnosis.
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We do Russell, every day.
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Hi Russell, I am sorry you are going through this but all of us on this thread have been there. I echo what the rest of the participants said; try to relax and don’t create more anxiety with the what ifs. Allow the doctors to properly diagnose. The best advise is to calm down and don’t let your thoughts get out of control. When I was diagnosed 3 years ago I immediately searched the internet and that resulted in depression and really bad thoughts. As it turns out I have the very slow varient. I am still working, driving and walking (albeit with a walker) but nonetheless walking. Praying for you!
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I completed my last visit with my neuro. He said my lower EMG was good it had one small muscle which didn’t respond but could be do to a little nerve damage.
That’s the leg that’s thinner. Now he checked my hands and I had a hard time connecting my right thumb to my pinky. I could just barely reach it. He said he would do a upper emg . Which came back clean . He said no ALS. So I left with an open mind n try n deal with symptoms of a thinner left leg , hand difficulty (thumb to pinky) and horse throat.(3″weeks)
Trying to put ALS behind me . But yesterday when I woke up I felt a little funny in my right Gluteus. I noticed that it was shrunken. Showed my wife who agreed and didn’t know why. Could this be another sign of possible ALS ? Wouldn’t the upper or lower EMG picked this up? Should I just focus on putting all this behind me more or search for more answers. Really scared about this.
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Russell, great news that you’ve finished with all your doctor visits and tests.
What kind of daily exercise do you do? And when you are exercising, have any of the recent muscle imbalances (change in size of lower leg or gluteus) been noticeable at all – – like a weak side or less range of motion. Or, are they just more noticeable visually?
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ALS is a diagnosis that is made by ruling out everything else. If your Neurologist tells you it is not ALS, your first question should be “what is doing this”?
But negative tests in EMG is very promising for not having ALS. The squeaky wheel gets the grease, so do not let the doctor forget who you are. Make sure he gets your questions and expect answers within days, not weeks. Sounds like you need more tests, but that is how they find out what is causing your symptoms.
No fear! Keep on fighting!
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John. The first EMG on may4th of my legs showed a small muscle not responding when the tech put the needle in. He kept trying to get a response but couldn’t. He said it could be due to some mild stenosis in the lumbar at L 3/4..
I left there very scared cause my left leg is considerably thinner then right.
When I met with the Neuro to discuss the emg he said it was ok . NO ALS.
He gave me a clinical test. Walking on toes n heels. He check my hands out. On right hand it was hard fir me to go from thumb to pinky. Just barely touch. So he said to ease my mind he himself would give me an upper EMG . He did that n he said it was text book perfect. NO ALS.
I’m just having hard to time accepting it when I look at my legs. He says the right leg just has more fat from ankle to calf . There’s no muscle from ankle to calf .so it’s not atrophy. Idkn weather to believe this. Im still very scared. Also noticed some atrophy in right buttock the next day after visit. I feel im nitcealking right but everyone’s telling me I’m just to stressed out. I know the ankle area is sore . I just don’t know c what to do. I have another appt in 3 months. I just feel like I have this .. I hope I’m wrong. I fell like all my arm and hand movements are off. Is the stress doing this to me. I went to park to walk with a friend about 2 miles we walk and he says im walking ok. Im worried if the leg gets any thinner its going to give out on me and that’s ALS. Losing muscle. My body just seems strange right now. Due I trust my neuro.
I have an appt for a dr rahman Pourmand who heads the ALS center in stony brook long island for May 24th. I did this 3 weeks ago as backup but should I go or not. Im too scared in away to go. Would you accept current neuro and try to move on ? Family is no help they think its alot of stress Nd anxiety i have , which i do but its not causing atrophy and soreness..
Sorry for this long text. Don’t have anyone to talk to about this.
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“He kept trying to get a response but couldn’t. He said it could be due to some mild stenosis in the lumbar at L 3/4..
I left there very scared cause my left leg is considerably thinner then right.”
Nerve damage from L3/4 can cause the nerve controlling the muscle to stop working. Something called Wallerian Degeneration occurs if the axon was cut. That means that the nerve inside the Myelin sheath dies back to where it connects to a muscle. Myelin sheath is like the insulation around copper wire in an extension cord. As long as the Myelin sheath still exists, a new nerve ending sprouts and grows about 1 inch per month. While the nerve lost contact, however, the muscle will begin to atrophy. From what I have read, if the nerve does not/cannot reconnect to the muscle is 18-24 months, the neuromuscular junction will die off which permanently will take out that muscle. Not bad news compared to ALS, but understand that this is the effect of an injury of this nature.
EMG’s pick up signals in the muscle. Fibrillation potentials and fasciculations can be seen with EMG. These are linked to denervation of muscle. When denervation happens, it can be caused by many different things. Chronic denervation -vs- acute denervation can be seen in ALS (usually several muscle/muscle groups) as well as other more common conditions.
Motor Unit Action Potential can tell us about reinnervation, or the bodies attempt to sprout new nerves near the site where denervation occurs (trying to replace nerves that are dying off). This is getting pretty technical, yet it only scratches the surface of what neurologists must learn to specialize in diagnosing these conditions.
Bottom line, be happy. You have been to some trained specialists and they have not raised the red flag. I wish I could say the same thing. But its good for you to gain an understanding of what they do, knowledge is king they say.
Maybe take up a tai-chi class, stretch out and do some yoga, or start doing laps in a swimming pool. I was walking 2 miles a day with my wife when I could. Keeping your muscles active and staying in shape will not only help your body and symptoms, but also will help keep your mind off these worries.
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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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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 ….
Did u have any twitches (fascullations) anywhere? -
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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