View Full Version : AlS .. very very scared..Dont know how to handle this. Please help
Hi , I'm a 60 year old male who had some back ache for a few months. I went to my gp who sent me to ortho surgeon. The ortho rans multi scans of my spine and said they were ok. Now please keep in mind im heavily stressed about this. Only over past 2 weeks I noticed some left ankle pain n some aching fingers n joints. Blood y ywork ok. It wasnt until my final visit to ortho I noticed my left leg was considerably smaller than right . My calf is smaller n bellow the calf is even more smaller than right. I would say by 1.5 inches in diameter. I showed it to ortho and he seemed concerned and told me it looks
Like muscle wasting and refereed me to neurologist. Its been 10 days now and it's seems a little smaller and it hurts to walk on..I seem to be walking a little strange. I have an emg scheduled for May 4th.
I'm extremely nervous .also feel like my movements aren't smooth but I'm watching everything I do also .. so scared ALS..
Sorry for this long post....
Hi Expresso,
I'm sorry you had no earlier replies, and that you have this physical problem which is understandably, frightening. The only thing that struck me, and I'm not doubting that you have the muscle wastage and walking feels strange etc, but you mention pain 'it hurts to walk on'. Pain isn't usual at all with ALS/MND, its generally an entirely painless condition. Aches and cramps from tired muscles are possible but not actual pain like you describe. Also you say that this started with backache, that would not be at all representative of ALS. So, just wondering how you are getting on today ? I guess the ortho wouldn't comment on ALS as its not his/her area, but wondering if you asked about it anyway ?
Hi cary thank you for answering. I'm extremely stressed out. I see that my left
Leg is alot thinner then the right. I also have fingers in both hands that ache constantly. All I do is think about I have aks 24/7. My Gp doctor thinks I don't. But he's a just a GP. The Ortho dr seems to think so and the neurologist is giving me an EMG on Tuesday. I'm extremely scared . When I do walk the left ankle seems sore . I am able to walk on tippy toes and heels. Im very very obsessed and stressed over als .
Just a GP? That's a bit dismissive of somebody who's trained for half a decade.
Expresso, did you actually ask the ortho or are you presuming he thinks you have als, because there are other reasons this could be happening. Other 'nerves' in the back/spine for example ? Neurologists don't just deal with ALS/MND.
The ortho took extensive mris and total bone scan of my spine . He said everything was ok. Then I told him about my hands hurting and I showed him my legs he said it looked like muscle wasting n i should see a neuro. That really set me off emotionally.
I went back to my GP n he csaid that my other leg was swollen [edema) so I felt pretty good, but then he sent me to vascular drvto get compression sox. The vascular doctor told me no I don't have edema and he didn't know why left leg was less muscular. So now who do I believe n my wrist fingers n hands still hurt. Im so stressed about als..Dont know what to do .
My right calf is SO much bigger than my left.... are you sure it hasn’t always been like this?
Well I went to nuero office for my emg. It had an abnormality. The left leg had a small muscle which the tech said he couldn't get a response from. The other muscles had low responses in the lj eft leh which is the smaller leg. All my spine mris are clean. Im very very nervous . Im probably obsessed with als now. Im am still able to walk on toes and heels but left ankle is a little sore. Idkn how to handle this. Every time I lye down on couch n try to relax my body I feel a little twitch here n there...everything including my horse voice for 2 weeks now points to ALS !!!!
Did your Neuro not give any feedback after the emg ?
The dr who gives the test just said that one small muscle wasn't responding. The other muscles on the leg were responding but low intensity. I said to him well I guess this is not a clean emg. He said u only have one abnormality. I have to meet Monday with my nuero. Im really really scared right now. This is the leg that I have atrophy in.
Words on a screen will not truly quell your worry but coming from a cancer survivor, it's not serious until they actually say it is. You're doing the right thing in getting it checked out. As difficult as the waiting is, that's what you have to do for now. In the time I've been on the forum, no one has been diagnosed and it's my hope that streak will continue.
Sending as always...
Positive thoughts
[QUOTE=Expresso;2002663]Fishman, God Bless on surviving cancer. Thank you for encouraging words. Please keep me in your prayers. Hope to talk to you soon ..
Expresso there can be many reasons. I work in the medical field. It’s not always something sinister. Keep positive and I’ll keep you in my prayers
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Angie thank you, but I don't have toxic chemicals in my body, all mris are clean . I mean honestly I can't see anything else that would cause muscle waste and a small muscle in that atrophy leg not responding .not mention a horse voice for 2 weeks and fingers n hands that hurt for past 3 weeks. Thank u so much for your post .maybe I need j last something encouraging from a dr or something. Cause right now I'm an emotional wreck..trying to stay calm..
Like fish said it’s not serious till they say it is. Stay calm easier said than done.
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Okay , just got back from neuro and we discussed lower emg along with the left leg being a little thinner. He said emg shows no signs of als. The one little muscle with the abnormality just a lil nerve issue .not als .. but during clinical
Checkup I noticed the right hand I had a
Little problem of thumb to pinky .can just barely touch the pinky . Hes giving me an Emg on my upper body tonight.
Do u think that can be something als related.
Do u think that can be something als related.
Based on the initial exam and scientific medical tests? No.
Positive thoughts
OK, well, thats all very positive isn't it Expresso - I did say on 30th, on this thread, that 'nerve issues' not related to ALS were entirely possible. Let us know later on the results of your next emg.
Got back from neuro where I did a upper
EMG which dr said was normal. I will try to move on with this and it's symptoms which I still have . I have noticed a new one this morning my right gluteus muscle seems to have shrunk significantly. My wife did notice. With a little soreness. Legs feel a lil weak. Not going to seek 2nd opion as I try to adhere to all your voices of reason which do comfort me. Thank you so much everyone and I hope I can get over this
It has been almost a month since I noticed my left leg atrophy. I am noticing that I don't feel right as I walk and my voice has still been slightly horse for the same amount of time. First emg of my legs showed a muscle (small) in the atrophy leg not responding . Tech thinks it from some mild stenosis in the back. I'm having a hard time grasping that. My neuro says no ALS. He did upper emg and said no als it was good. Still have symptons . Dont know what to do. My wife says its all stress causing my voice
Change. Did notice I fumbled over some words onec or twice. Scared and confused... also noticed a little loss of muscle in right upper gluteus.. am i losing it .... .
When this thread first started I mentioned nerves in the spine causing the leg problem, and spinal stenosis was what I had in mind at the point. I think if mild stenosis has been potentially diagnosed then you do need some advice on how to deal with it, there are surgeries (my Dad had it) to release the nerve compression, can your PCP advise anything at all ?
Carys, I'm going to pick up my emg reports today so I have them. I've been feeling a littke weak in legs and shoulders but I don't know wats stress and wats not. My throat has been horse for 3 weeks already. My ankle feels sore when it walk on it. Idkn what to do. Am I going crazy. Can the stress cause my legs to feel tight and my shoulders and hands. Just hard for me to buy into mild lumbar stenosis causing my ankle and leg atrophy and some pain in it. I nerve felt pain in spine or leg area. I also feel uncoordinated withl my arms and hands ..can I be feeling every sympton of als
At the same time ?
Carys, I'm going to pick up my emg reports today so I have them. I've been feeling a littke weak in legs and shoulders but I don't know wats stress and wats not. My throat has been horse for 3 weeks already. My ankle feels sore when it walk on it. Idkn what to do. Am I going crazy. Can the stress cause my legs to feel tight and my shoulders and hands. Just hard for me to buy into mild lumbar stenosis causing my ankle and leg atrophy and some pain in it. I nerve felt pain in spine or leg area. I also feel uncoordinated withl my arms and hands ..can I be feeling every sympton of als
At the same time ?
Clinical Weakness—ALS is about failing, not feeling.
ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work
FMP
OK, lets take the legs out of it for the moment, and just focus on the arms and hands. You are saying that they 'feel uncoordinated', but you have had a clear EMG of the upper body days ago. Feeling uncoordinated is not the same as being uncoordinated. So, the 'feeling uncoordinated' of the upper body simply can't be from ALS, as the EMG would have showed it. Your hoarse voice can also not be MND/ALS, as the upper body EMG would have also showed that. So, anxiety and 'developing' symptoms by being certain you have MND is a definite possibility. The mind is a powerful thing, it can cause and convince you with absolute certainty of certain symptoms and conditions. You are no doubt thinking of MND all the time, scanning your body all the time and that alone could be causing what you are experiencing.
So, your legs, you say you are picking up the EMG report today. It sounds like it will be very medical and presumably terminology will be difficult to process for a lay-person, so what about asking a different medical practitioner to read through it for you and relate the findings ?
Fishman i prey your so right.
Cause I've been as my wife says heavily stressed and obsessed with having als.
I feel everything down to the point of not even swallowing right.. I feel my gait is off and I don't walk right and legs feel heavy..24/7 every minute of the day...and my atrophy leg near the ankle hurts when I walk. I prey your right
Expresso, all these 'symptoms' have appeared within 3 weeks - ALS can be fast, but not to be at the speed your symptoms have all appeared.
Fishmanpa , Carys i thank God that I have you to confer in my life. I thank you for your encouraging words and wisdom God Bless you both as you are my friends .. have a great night guys and may I talk to you soon.
EXPRESSO ( RUSSELL)
Expresso, I'm close to your age (62). I've had two heart attacks, a triple bypass, triple stents and Stage IVa Head and Neck cancer. The side effects are numerous including swallowing issues, chest pain (due to angina) and a plethora of other permanent side effects. Due to the H&N cancer, my eating has changed. There are certain foods I avoid totally due to how challenging they are to swallow. For me, since treatment, its been 'chew, chew, chew, sip swallow' and even then there are times something gets caught up in my throat. No fun I assure you. But.... It's my 'new normal'. As we age, things change and we have to adapt. That's just the way it is :shrug:
Based on what you've posted and the doctors opinions (based on scientific medical tests), you have some nerve degeneration issues which plague many older people. Just like I have to deal with my physical issues, you'll have to deal with yours and come to get comfortable with what your 'new normal' will be moving forward.
Let us know how you're making out ;)
Positive thoughts
Expresso you have also been told countless times by the people on the ALS forums to stop worrying. You are doing yourself and your family a disservice. You have been cleared, so try to stop it.
Expresso you have also been told countless times by the people on the ALS forums to stop worrying. You are doing yourself and your family a disservice. You have been cleared, so try to stop it.
Wow! Yeah, please leave them alone and stay off that forum! You should be thrilled to be medically cleared. Many people on that forum don't have that luxury. As has been said, stay off Google and stop reading about ALS. YOU DON'T HAVE IT!
FMP
Yup, nobody should be on an ALS forum unless they've been diagnosed with ALS ! I know it feels like a magnetism to find out from 'those who know first hand', but you need to stand back and see that asking ALS sufferers to input into your worries and alleviate your fears is very very wrong.
Yup, nobody should be on an ALS forum unless they've been diagnosed with ALS !
There's a sub-forum on there called "Could this be ALS?" It's littered with HAers that follow the same HA patterns we see here. The sticky at the top of the sub-forum (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!) is copied from that page. It was the same when I was on the cancer forums during my battle. I find it highly disrespectful to continue to post on those forums, especially when medically cleared. Most of the time, those posters are banned from the sight after continuing to post after being told to stop. I can assure you that those on that forum as well as the forum I was part of would have given anything to have gotten clear test results.
FMP
Well the thread on there has over thirty replies which is very high for a forum that averages maybe one. They have been very lenient but it’s bordering disrespectful now. I understand the fear having been through it but going on there literally doesn’t do anyone any good. Your wasting there time and your only fueling your fear. Be honest, it has never made anyone feel better about their fears to search it. Let alone on that forum.
Sorry to butt in, but... Expresso, anxiety is not an excuse for being a horrible person. By posting on forums for (and taking the time and energy of) people with a terrible disease that YOU DO NOT HAVE, you are being a horrible person.
Hijikata - can I ask, how you yourself know about this thread and that this is the same person ? (and have come here to tell) I see your background on this forum also involves very long term ALS fears, at least 3 years. Just wondering about things really - as you had a negative EMG yourself a year ago, so why are you on there ?
Fishmanpa,
Sorry if I caused any problems in this forum didn't mean to..
This emg to me isn't very good and scared me. Sorry again..
Emg of legs ..
Findings: evaluation of the left peroneal motor nerve showed no response (ankle)
And no response (BFIB)
Evaluation of the left peroneal f wave showed no response. All remaining F waves were within normal limits.
H-reflex studies indicate Right tibial H Reflex has abnormal NR.
EMG needle evaluation of the left extensor digitorum brevus showed motor amplitude.
Impression: Chronic denervation in the right
L4 AND bilateral L5. Absent CMAPS nd
EDB responses is of uncertain significance
You've caused no problems on this forum Expresso, it is the ALS forum that you shouldn't be on.
I'm really sorry, but being entirely non-medical I know nothing about what the above means or is saying. As I explained earlier - I think you need someone with knowledge to read it and tell you what it means. Presumably the EMG is going on to someone, your PCP ? This is what worries me about people getting and reading complex results that they aren't trained to read, you can get very worried about something that isn't an issue. There is clearly something causing the nerve problem, but not ALS.
Fishmanpa,
Sorry if I caused any problems in this forum didn't mean to..
This emg to me isn't very good and scared me. Sorry again..
You didn't cause any problem and there's no need to apologize to me. I just find it disrespectful that you continued to post on the ALS forum even after being told by people who actually have it that you don't.... and they read the report you posted! While there certainly may be some nerve issue going on, you've been told it's not ALS. If you can’t accept this go back to your doctor and tell him you don’t believe him and have him explain this to you.
FMP
While I don’t appreciate being questioned as I’m not the one posting on the forums, i suppose it is a fair question. I’m still subscribed to the updates that get emailed cause I never bothered to turn them off from years ago, and saw the post - same forum name. I also wouldn’t compare my fear to fear of people on here and the ones that post there. If you have read my posts you would see if never had an over the top fear and I was fine as soon as I got the negative test. You would also see that most of my posts have nothing to do with myself, I’m usually trying to help or at least provide perspective to other people, which I fee I have done quite a good job with in many cases - especially when most people with hypochondria are impossible to dissuade from their skewed beliefs. These people have had every test under the sun come back negative and still harass dying people, it’s disgraceful.
As a great doctor told me many years ago, you have to stop living in your own head because nothing you are worrying about is grounded in reality.
Fishmanpa,
Sorry if I caused any problems in this forum didn't mean to..
This emg to me isn't very good and scared me. Sorry again..
Emg of legs ..
Findings: evaluation of the left peroneal motor nerve showed no response (ankle)
And no response (BFIB)
Evaluation of the left peroneal f wave showed no response. All remaining F waves were within normal limits.
H-reflex studies indicate Right tibial H Reflex has abnormal NR.
EMG needle evaluation of the left extensor digitorum brevus showed motor amplitude.
Impression: Chronic denervation in the right
L4 AND bilateral L5. Absent CMAPS nd
EDB responses is of uncertain significance
Mate you are being very misleading. The top few results are NOT from the emg, they are from the NCS. NCS does not having anything to do with als, and an abnormal NCS points away from ALS because there is obviously another cause of the issue. You were told this so you’re being disingenuous.
I understand you are worried but you have been cleared multiple times
While I don’t appreciate being questioned as I’m not the one posting on the forums, i suppose it is a fair question. I’m still subscribed to the updates that get emailed cause I never bothered to turn them off from years ago, and saw the post - same forum name. I also wouldn’t compare my fear to fear of people on here and the ones that post there. If you have read my posts you would see if never had an over the top fear and I was fine as soon as I got the negative test. You would also see that most of my posts have nothing to do with myself, I’m usually trying to help or at least provide perspective to other people, which I fee I have done quite a good job with in many cases - especially when most people with hypochondria are impossible to dissuade from their skewed beliefs. These people have had every test under the sun come back negative and still harass dying people, it’s disgraceful.
As a great doctor told me many years ago, you have to stop living in your own head because nothing you are worrying about is grounded in reality.
Thanks for the honest reply which does clarify everything :). (I was just checking, as we've had people with grudges in the past come over from other forums, clearly that is NOT you, as your morality shines through in your words.)
I've looked back at your post history, and you did indeed accept your negative EMG. I think your knowledge and background could be very useful with the ALS/MND believers on this forum actually :winks:, and the posts you make very insightful - as I had no idea that those results posted could indicate anything 'telling' but background you provided is incredibly useful. I know a good bit about MND on the ground, so to speak, but not medical terminology and tests.The very hardest of HA people to deal with are those who never believe doctors or test results.
Expresso - I'm afraid there is only one way to go here now. Find out what and why you have the symptoms you have, one thing is certain, it is NOT ALS/MND. I know you feel that the tests are wrong, that people are wrong that you KNOW you have it, that something is being missed, that you MUST and DO have it. The belief in your head is consuming and irrefutable, you feel a desperation, but you have fuelled it yourself (the belief) through your own desperate fear. I understand that feeling. You must use every piece of strength you have now to start counteracting your negative thought processes and repeating why you need to accept the results you have. You simply must not go onto the ALS forum, leave those people who are dealing with your worst fear FOR REAL to support and help each other. They must not waste their time on HA.
May I ask, after several members have advised against it, why you continue to feed your dragon on the ALS forum?
Expresso (https://www.alsforums.com/community/members/expresso.45354/)
Member · 60
Joined Apr 21, 2021
Last seen 32 minutes ago · Viewing thread Could this be ALS ??? Very scared
FMP
Fishmanpa, I guess because when i look
At me leg and see its considerably smaller then right and I notice my right gluteus muscle has decreased.i have some twitching in the same area everyday in the back and left shoulder. . It sets me off. Right now my speech is a littke off ive been fumbling over some words and my voice continues to be horse. Swallong dosent feel right also. Feeling of a lil numbness around my lip area.. My legs over past 2 weeks feel weak when ever I try to stand on them .
Thats what keeps my mind on this.
My wife continually tries to tell me I'm just to dam stress. Always thought I was pretty intelligent I guess I read too much on this .its consumed me . Can all of this be from my anxiety over this. Is it possible to have all this at once in 1 month and half.
I do have an appt Monday with a neurologist that is the director of the ALS clinic in stoney brook long island.
To try and put an end to all of this.
Anxuety and stress are at an all time high. 24/7
That's the whole story in a nutshell..
The ALS rabbit hole is deep and it's quite apparent you're in over your head. You're still spending inordinate amounts of time reading on the ALS forum and are now paying for further reassurance despite being told you have a nerve issue. In the 7 years I've been responding to ALS fears, there hasn't been one case and I believe that streak will continue. Let us know what the next doctor says.
FMP
Fishmanpa, yes I know.. im in deep. But I also know my body.. my left leg is severely atrophied and my right gluteus muscle has diminished and that with knowing my emg showed chronic denervation. I cant think of a good reason why it's like that. Well that's really scaring me..im sorry. I hope its all for naught. But I'm very nervous. Very
Fishmanpa, just got back from Appt with the. 2nd neurologist whos the director of the ALS clinic in Stoney brook long island. He looked at previous emgs from my first Neurologist.Did a brief clinical observation. . He concurred with first Neurologist that theres no sign of⁴ ALS.
Fishmanpa, just got back from Appt with the. 2nd neurologist whos the director of the ALS clinic in Stoney brook long island. He looked at previous emgs from my first Neurologist.Did a brief clinical observation. . He concurred with first Neurologist that theres no sign of⁴ ALS.
Good to hear. Hopefully, you can now put this behind you. Good luck!
Positive thoughts
YOu must believe now, work on telling yourself that day and night whenever thoughts come into your head and sew doubt. Leave the ALS forum alone, don't go there. So, what do they think might be causing your nerve damage, the stenosis ?
Leave the ALS forum alone, don't go there.
Expresso... You really need to stop reading that forum. You don't have ALS and you're only hurting yourself by going there feeding your unfounded fear.
FMP
Carys, yes and that's whats bothering me. My leg is severely atrophied. When I do a shoulder shrug my shoulders tremor bad.
My legs feel heavy and weak. And some atrophy in my right gluteus which the 2nd neuro didn't bother to check or comment on. Toes and fingers still ache . My voice is still horsed. And some numbness on my face Nd my ankle hurts when I walk on it and I can't get an answer from either neuro why?
I mean I know I'm Heavenly stressed to the max . Its even causing problems with my wife. I know I'm not going crazy im trying to look at all this logically. Could I have done most of this to my self? Worrying . Which I have been 24/7 for 5 weeks straight. All from mild stenosis in my back..im trying to grasp it. Internal tremors in my upper body also. Can all these symptoms happen in 5
Weeks ? I guess I need a lot of reassurance. The Neuro i just seen for a second opion based his opion on my first neuros emg which had some abnormalities. He said to me no ALS. I hope there right cause I know stenosis is a proven 40% chance of misdiagnosed.. sorry for this long text..
I really appreciate all of you and the time you give.
Just came back from my orthopedic surgeon and he looked over emg report from my neurologist. He said that there's nothing in my back that caused the problems im having right now. Hes the dr thar referred me to the neuro.
I'm am really upset right now. The emg is wrong. It's not from a pinch nerve or stenosis. The ortho confirmed this. Idkn what to do right now. Im so stressed right now.
What you need to do is learn to practice acceptance. Life isn't ideal, but it is what it is. If you learn to accept these sensations you may find they'll diminish on their own.
I've gone through phases before when I've had three or four months of sleep paralysis every night, or feeling unable to swallow, or migraine auras a few times a week, up to three at a time. Nothing has ever come of any of it, and all of them have disappeared in their own time.
I asked earlier and I'm asking again. And I also ask knowing your thread there has been closed and you've been asked not to post again.
May I ask, after several members have advised against it, why you continue to feed your dragon on the ALS forum?
FMP
Fishmanpa, I only posted because my leg has really atrophied and I had an appt with my ortho surgeon who actually referred me to the neuro. He looked over the emg that I posted online
And he said that the emg is not supported by his opion. He said nothing in my back (stenosis or pinched nerve) caused whats going on. I don't have either in my back so he really didn't know what to say but sorry..
I kinda had a feeling the stenosis dx wasnt right. Now I don't know really what to do.
I guess just wait... that's why i posted.
Im trying to learn to accept whatever. I understand fully closing my thread. No problems. I understand fully. Im not a disrespectful man im just a confused man right now.
Well you can't post there anymore but the question still remains... Why do you continue to feed your irrational fear by reading there? You've had two neurologists, including the director of the ALS clinic at Stoney Brook on Long Island, which is one of the highest rated hospitals for neurology in the country tell you you don't have ALS.
There's nothing real life ALS sufferers could say to reassure you and it's apparent nothing said here is helping but then again, the fact you're posting on an anxiety forum speaks volumes as to what the primary issue really is.
Good luck and positive thoughts
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