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Very very nervous … dont know what to do
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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47 Replies
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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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Dagmar. Thank you so much for responding. It is very frustrating. I just don’t know where to go from here.
Our my physical symptoms that of als ?
Where should I focus my attentions to find out whats going on with me. If my left leg wasn’t so smaller I probably would be a lot more calmer….
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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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Happy Birthday Russell and let us know how you’re doing. I hope you don’t have ALS and that you are able to feel better soon.
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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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Happy birthday. I turned 60 back in November. We’ve all been there as others have said. Wishing you the best!
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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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John, based upon all my symptoms and your experience what odds would u give me..
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Russell, try reaching out to a mental health professional for help with anxiety and stress. Listen to the doctors and follow their instructions. We have a great online community and support system but we are not doctors or mental health professionals while participating in the forum.
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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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John , thank you for being here with me. I feel as if I have someone to count on. God Bless and keep me in your prayers ty
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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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