Opinions please/ Worried

Georgi88

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Hello everyone,
My name is George

I would like to describe my situation and I would be very grateful for opinions. Sorry for my English, it's not perfect.

I was completely fine until April 2020 , but suddenly I started to feel generally week and my palms and feet was feeling swollen. I was started to wake up suddenly at night , like I had no breath. Started to sleep everyone afternoon (never did that before) Every time when I was waking up my fingers on left hand was numb. I didn't show attention in beginning, but started to have pain in my forearm. After 2 weeks this started to happen to my right hand. From then both forearm are stiff and feel pain when trying to hold something. I lost my grip power. Still didn't give attention. Then I started to feel strange feeling on my left foot when I was stepping. Two weeks later the same on the right foot. Now I still have this feeling of muscle stretching under the feet. Then decided to go to neurologist. She sent me to MRI on brain for MS. MRI was clean. Blood full test clean (electrolytes, vitamins, thyroid hormones, everything) , except higher IgE around 400 ( normal 0-100). I was sent to NCS - it showed ulnar nerve problems in both hands, more on left side. Everything OK , but I started to have muscle twitching first at the legs and now absolutely everywhere on my body. Especially after doing some effort, seconds after I had twitching on that muscle that I used. Still was not worried, but suddenly I started to feel weekness in chewing. How to explain it - in middle of chewing like the muscle was overused. Like stiff. It started to become more difficult and more. Now even when I wake up I feel the stiffness on my face, cheeks. Then I decided to go on neurological hospital for full tests. MRI on cervical spine - multiple stenosis from C3 to C7 and T1. The doctors said it's not that bad, I shouldn't experience those issues according to him. Then EMG and NCS on 14-15 muscle plus on the tongue and cheeks (masseter). No spontaneous activity, Normal amplitudes and the rest. No evidence of active denervation. NCS - again froblem in ulnar and median nerves and frolonged F waves on those nerves. They told me nothing to worry about Als, SMA, Siryngobulbia.

ENT neurological found only small problem with vocal chords on right side in respiration, maybe little atrophy on side of the tongue , but not sure.

I went home , but still had problems - with sleep( only 3-4 hours per night) , when I lay down I feel I am not breathing normal, like snoring, feeling, I wake up and a lot of saliva on the pillow.

I went again to neurologist - she saw atrophy on left shoulder, left hand, left forearm and on my left hand you can see the ligament near the thumb. On right foot slight atrophy - the dent is visible and the ligaments. She agreed on that.

She decided to make another test for Stiff man syndrome. Needle EMG on biceps brahii and rectus femoris ( on the leg . Both on left side. The biceps OK - MUAPs, duration and recruitment in normal range, no polyphasia. On rectus femoris - prolonged MUAPs - minimum 448, maximum 5880, mean around 3300. The normal should be 750. On both muscles no spontaneous activity. Even , if I saw this big difference in rectus femoris, she said - please calm down, it's not ALS. I don know what to think anymore. It says, that in ALS there is no pain , but I feel little pain when I use my hands , when I step on my feet, I also think start to speak little bit differently ( I work on microphone and sing and I realize it , maybe from anxiety, I don't know anymore) . She told me to take Diazepam - the Truth is that this feeling of tightness and problem with chewing improved a little, I sleep better.

Just I wanted opinion from people , who know more things about MND . I believe my doctors, just I am worried.

Some questions:
1) If it was bulbar - is it possible chewing to be affected before, slurred speach ( because I hear it, but not the others. Maybe in my mind)
2) If there is no spontaneous activity found, should I worry for those abnormalities in MUAPs of rectus femoris
3) If I have bulbar ( I say IF ) , should be detected also in another muscles of the body, especially when I say that I lost muscles on left side.

Sorry for the long message. I say again - I trust my doctors, but always is good to have opinion from people , who know better this disease.

P.S I hope everything will be fine with me and even if I have good or bad news .... I will help how I can guys. I have many connections, with very very famous people. I work as manager at strong International company. One example - Grigor Dimitrov ( top 20 tennis player) I will do my best to convince many people to donate for the finding of cure not only ALS , but all MND diseases. That's what I can do with my position.

I hope to receive some opinions. Good or bad, everything I appreciate. I am not crazy, just worried.
 
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Nikki J

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Hi


the usual first sign of bulbar is slurred speech heard by others. Tired chewing sounds like something else

2) no those mups are not concerning given the rest of the emg being normal

3) if you had bulbar ALS and atrophy in other places due to ALS the emg should have been abnormal in those and multiple other places.

hope this helps
best of luck
 

lgelb

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1) If no one else hears it, it's not slurred speech.
2) Abnormalities in a single muscle cannot be used as evidence of ALS, which shows up in multiple regions and most muscles tested.
3) The hallmark of an ALS EMG is abnormalities even in muscles that seem fine, so with bulbar onset we would again expect abnormalities in other regions.

Sleeping in the afternoon with sleeping problems at night, and only sleeping 3-4 hours total, can all be associated with the deficits you feel, even if you used to be the person who didn't need as much sleep as others. As we age, if we don't accommodate our needs for sleep, the effect of missing those hours can become magnified, and, of course, these are stressful times. That diazepam has improved your issues somewhat supports that stress could play a role.

I would be thinking about what might have led to the sleep problem in the first place, and try some low-tech solutions to see for yourself, like recording audio/video of your sleep. You might need a sleep study to check your breathing and limb movement. You might need an appliance to reduce teeth grinding that affects your jaws and even face. But you haven't presented any reason that I would worry about ALS.

Best,
Laurie
 

Georgi88

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Thank you very much for the replies. The best ALS specialist in my country told me ,, It's not ALS" . I trust him and your opinions. I should go to another check though , because I have also some other issues like constipation time by time and acid reflux nonstop and the trouble with sleep , which I mentioned . Also tinnitus I'm my left year for the last two weeks. I am afraid of some form of MSA also, but because of my age (31) ... I should be very unluky to get that. I will try to get another appointment to make my questions to the neurologist.
 

Georgi88

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Hi again!

First of all, thank you very much for the responses a month ago!

I was in a neurogical hospital for few days. I had lumbar puncture and EMG again on 5-6 muscles. My main issue is that I still have the same problems as before , plus I have shortness of breath already 4-5 months. I had this problem only during the night, but now I have is also during the days for the last 2-3 weeks. I have lost a lot of muscles in my both forearms, and both feet. Constant twitching and cramps around the body, but mostly at my calves. The neurologists saw the lost of my muscles. There is visible change from 2-3 months ago. Still no failure and only weekness at my wrist and fingers on left hand. Even if I lost muscles on my feet I can still stay on my hills and stand on my toes. The EMG was done on my forearm and thumb , where muscle wasting is more visible, also on my both legs. The neurologist said , that everything is fine , no signs of motor neuron disease. They refused to do EMG on my thoracic muscles. I made the mistake to ask the neurologist to do that and he got little bit angry on me. My biggest fear is that , there is a very very small chance to have respiratory onset ( I know it's rare, but exist ) , so I feel little bit confused. I went out of the hospital with no answers. My question is - If it was respiratory onset and I already have some symptoms/atrophy on my limbs , would this show on the EMG if the cause was ALS? Sorry for asking, just the neurologist didn't give answers to my question and I am sure you can give me your opinion. I saw somewhere written , that respiratory onset is difficult to diagnose and it could not show on EMG sometimes. But I already have some complains on my limbs, so ... That's why I would like to read your opinion. Just, I don't understand what else it could be. I had many exams and no answers. I am in a very difficult situation and very confused.
 

Nikki J

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To answer your question yes The emg would show with atrophy in the limbs due to ALS
it sounds like you were trying to direct your testing. Not only does it upset the doctors sometimes, it can hinder your diagnosis. The doctors end up trying to prove to you it isn’t ALS rather than focusing on your symptoms. Let ALS go and ask them what is wrong with me.

you were told before by an ALS expert no ALS. You should have moved on from ALS and have been open to other things.

we occasionally get people here who go from doctor to doctor having the same tests over and over ( 8 or even more times). Don’t be that person.
 

Georgi88

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Hi Nikki,
Actually I am open for other things, I know it could be anything - cancer, heart, other neurological condition ... and I am searching to find the reason. Who knows? I still have the ALS fear somewhere in the back of my mind only because I saw some stories of people with respiratory onset and they had normal EMG and widespread atrophy , but still using their limbs. I am just worried that maybe something similar is happening to me and I am confused with all the information. On one side I understand the doctors, also your opinions ( for which I am thankful ) , but those atypical exceptions that I read about drive me crazy. It sounds strange to me - how in respiratory onset I saw people writing about widespread atrophy, but no EMG findings? How is that possible? I thought EMG is abnormal , even before atrophy exist. The logic says - doesn't matter what onset you have - if you have symptoms ( atrophy or weakness) on legs, arms, tongue the EMG can not miss that ... but then you see again stories of some people who are saying the opposite. I would be thankful to read your opinion on that and I stop with the questions.
 

lgelb

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If you had respiratory onset of ALS, you'd know it. It's unmistakeable. You wouldn't have shortness of breath for months. Physicians would be rushing to support your breathing with a machine.

With the kind of issues you report, for the length of time you feel you have had them, a clean EMG is a large X through ALS as a possibility. If doctors still feel that other conditions have not been ruled out, of course, they should be. That would be a worthwhile project. If you do not have confidence in your medical team, find another. That would be another worthwhile project.

Continuing to chase ALS is not worthwhile. You might be delaying treatment that could help you. You might ask about a sleep study and lung function tests to narrow down a diagnosis. If nothing else emerges, it would be time to focus on overall fitness (physical, mental, emotional), which can make a huge difference in how you feel.

There is no one here who is going to believe you have ALS. As for whatever stories you have read, you can live your life based on Internet stories, including accounts of alien abductions, or you can follow the most modern science you can find. Stop reading, start living.

Best,
Laurie
 

Bestfriends14

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As I listen to my husband struggle for breath, beneath a mask hooked up to a machine that breathes for him, I find the fact that you arguing with knowledgeable forum members (and even neurologists), for a case that you may have respiratory onset ALS insulting. You don't have any type of ALS, respiratory or otherwise. Quit arguing and go live your life. You are blessed with good (physical) health and you're throwing it away. Be grateful for that health.

Good luck to you and take good care.
 

TippiLeigh

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Hi Georgi. Sounds like you’ve been through a lot and have a lot of fear. I totally understand that. And like you, I’ve found lots of contradictory patient stories on the internet, different from what I’ve found on this site, so I don’t take what you’re saying as arguing. I see that you are just asking questions, because you’re afraid. You sound like you definitely has some health issue going on. The only people that can figure it out what it is for sure though are doctors. Not strangers on the internet. Be your own advocate and continue to see other specialists until someone can help you with your symptoms and help give you a better quality of life. Hang in there! I’m hopeful you’ll eventually get to the bottom of it.
 

KimT

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Hi,

If I were you, I'd get a sleep study and a pulmonary function test. Those two tests will reveal if you have any sort of breathing problem or sleep problem.

I'm sorry you are scared and hope you get your questions answered by your doctors.
 

Georgi88

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Thanks to all for the replies!

For sure I am not coming here to argue, honestly this is the last thing I would do. I am here , because I see people with information and knowledge and looking for advices.

I saw that some of you mentioned pulmonary function test. I will go for it for sure, since beside the rest of the complains I have stuffy nose from the beginning of the year, which doesn't go away. I was thinking maybe some allergy, but it's been already many months with it and becoming worse. I was just not giving too much attention to it.

So ... for sure I will ask for that test my doctors. Is it going to show some abnormalities, if the issue was respiratory onset? Please answer to my last question and I will come back with update , with the results from the test. Thank you again in advance!
 

Nikki J

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If a person has respiratory onset ALS then yes their pulmonary function tests will be abnormal. Please remember that there are many reasons for abnormalities on pfts so they could show something and not be ALS. They would need to be interpreted by your doctors
 

Blackeyes

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Stuffy nose sounds like it could be allergies and yes it can last for months and months AND can get worse at certain times of the year now being one of them. Dust never goes away. Changing of weather... Which could also explain why you have a lot of saliva on your pillow. If your nose is stuffed your probably sleeping with your mouth open. Which can also cause jaw aches. Sleeping thru out the day will cause u not to sleep at night. Even a quick 20 min nap will keep me up for hours.
Tests have been done and not one of them has indicated ALS. Your drs say no ALS including “the best als dr in your country” has told u it’s not. You say u can stand on your toes and the heels of your feet no problem. You can walk and lift and talk and breath and SING. If u can do all that you DONT have ALS. I don’t understand why instead of being relieved and moving on you keep insisting that all the tests and drs and even what your body is capable of doing are wrong.

I’m truly not trying not to be rude it’s just extremely hard to listen to people who have a symptom and decide to self diagnose with the internet as their guide and refuse to listen to anything anyone tells them. When u mentioned a stuffy nose and how now u believe it must be something serious, and my husband loses his breath just by trying to say “I love you”.....
I can’t imagine why anyone would join a forum before being diagnosed and insist continually to their drs and people here that they have a disease even when everything points to the fact that they don’t. I can guarantee you your not going to find the answers on the internet. You need to listen to your drs, eat right, sleep at night not day. Maybe see an allergist or a sleep study and see if u have sleep apnea.
You’re obviously worried about your health and rightfully so but maybe just maybe you’ve been so focused on your symptoms and what it could be that your mind may have emphasized the few symptoms that you have. Nothing is more frightening then feeling sick and not knowing why. It happens all the time before any diagnoses. But sometimes acid reflux is just acid reflux and constipation is just constipation. Not all symptoms are part of a big picture.
My advice. Stay OFF the internet and away from all forums until your drs diagnose you. Stop looking at everything that happens as some sign that something horrible is looming over you. Mental health is very important right now. We can convince ourselves a lot of things and make things 100 times worse. There is nothing wrong with talking to a therapist while your drs are looking for answers. They can provide you with a lot of support during the process and are there if in fact something is wrong. But this is just not the healthy way to do it.
They will figure out what’s wrong by running tests. Don’t tell them you read something and want a certain test. Dr’s don’t appreciate health tips from google.
And lastly. When a dr tells you you don’t have a fatal disease. Be relieved. Be thankful and move on. Stop trying to fit your symptoms into the wrong box.
Good Luck
 

Georgi88

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Hello again, everyone!

I would like to update. I listened to your advices and I went to do pulmonary function test. The FVC was 92% and FVC1 was 98%. Total volume capacity over 100%. They consider that as normal. I didn't check supine, they did only standing up. In my country they are not checking MIP and MEP unfortunately, so I don't know about those numbers.

The reason that worries me a lot is that, I had again visit to my neurologist. She wanted to do again EMG , but only on left hand. Only two muscles ( thumb muscle inside of the palm and the small muscle on the side of the pinky finger ) She confirmed that there is hypotrophy / atrophy on those muscles. It's visible. Also I still have strength on that hand , but it feels very uncoordinated, stiff movements. One of the muscles didn't show abnormalities (thumb), but the other (pinky finger) showed ,,single fibrillations and fasciculations" and high amplitude potential. This is the first time after 4-5 months that EMG shows something like that. You understand, that I am very worried about that. The doctor still doesn't believe this finding is concerning. I asked her how is this possible? I have all those complains, you can see the muscle is wasting away and now the EMG shows ,,that" . I really don't know where to go from here. Should I contact again the neuromuscular special, who sent me off 2-3 months ago? He will call me crazy again. I really don't know how to act from here. It's a small county , so I don't have options. I will be thankful to read some advices in general and opinions for my recent EMG. Apologies, if I disturb you somehow ... Just I feel lost and still looking for answers.
 
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