Worried Swede needs a little advice!

[The Swede]

Hi!
My namn is Johan i'm 34 years old and live in Sweden! Hope someone can come up with some good advice about my current situation. This has eaten me and my family for some time now..

For about 2 months, I have been on several hospital visits without being diagnosed. I have done several blood tests, MRI of brain,throat and spine (all good) the electric nerve test that was normal and EMG..but not lumbar palption.
I have hyperreflexia in knees and feet and my big toe didn't move at all with the Babinski test.
My EMG showed some "neurogenic changes" in the back (what ever that means?) They looked at right and left bicep muscles inside of both calfs, both Tibialis muscles, a needle in the back and one in the cheek near the lips.

In recent months I have had ongoing fasciculations in both of my calfs. Much twitches spread all over the body arms, shoulders, feet, legs. Atrophy that even I see in the hands both right and left especially the thenar muscles.
The joints are cracking in my legs,arms and neck as soon as I move.
No direct pain except cramps at night mostly in my hips.
I get tired of nothing and get muscle soreness real easy.

Since 1 month back, the weakness of the arms legs and hands has become much worse and so all the twitching. As soon as I try to lift something or bend the arms/legs with a little resistance they shake. Being easily breathed and having some problem with breathing at night laying on my back.

Is this obvious ALS/MND?
Can you give me some guidance how to think becouse i'm both scared and don't wont to stress out my family to much?

If you read this far, I just want to say THANK YOU !!
/ A worried Swede

 

[Clearwater AL]

Swede, you wrote,

"Is this obvious ALS/MND?"

Given all of the tests you have had, EMG and such, more than one hospital visit, which had to be of several highly trained physicians, you've got to give this sincere consideration... apparently they did not approach the topic of ALS. It would have been more obvious to them more than us. If any possible indications were present.

Don't let Dr. Google over rule their opinions.

 

[The Swede]

Thanks for your reply! Sorry for bad grammar ( I'm Swedish) I feel I can't trust the doctors because first they say I have all symptoms such as hyperreflexia, twitching, atrophy, weakness and so on.. but since the EMG "only" showed some changes in the back, it was like all other symptoms didn't mean a thing. And my shoulders and thighs did not even get tester by the EMG...I'm trying to get a new EMG, but according to them it makes no difference, which is very frustrating. Do you think I should just let go of everything despite I feel like I do?
I have lived in this body for 34 years so I feel that something is really wrong here.

 

[Clearwater AL]

First, you need to express the concerns you have posted here to your Neurologist.

From what you wrote in your intro post it appears they did a full EMG, even on your cheek! If an indication of ALS is present it will be presented by doing an EMG on just one side of your body. As said here so often... EMG is the most definitive test.

As for the Babinski test you mentioned, the positive indicator of a lesion is when the foot doesn't arch downward but the foot does the opposite and the big toe points up and the remaining toes spread. A foot that doesn't respond more often can relate to a back injury or a back problem. You mentioned they even did an EMG on your back. ??

You have some health issues you need to follow up on. But... if all the doctors you have seen, all the tests you've had, and the neurologist/doctors are not concerned about you having ALS, yes... you need to let ALS go.

As you wrote,

"I'm trying to get a new EMG, but according to them it makes no difference."

It's up to you but... you'll probably get the same results.

 

[The Swede]

But it feels like everything goes so fast with my symptoms. I know there are different ways for everyone, but I've really gotten worse in recent weeks. Do you recognize any of the symptoms I described earlier?
Have you ever been to any neuro / physician who only releases all symptoms such as weakness, atrophy and hyperreflexia just becouse the EMG were ok? And even though they did not test my thighs and shoulders where I felt the greatest weakness, would ALS be found in the places where they put in the needle? I asked the neuro who performed tha EMG if he could see if I was in the beginning of the disease but he just said that he could see if the disease was active "right now". Is that correct? It also made me nervous that I'm in the beginning....
Once again Thanks for taking time with me..

 

[Nikki J]

If you have any symptoms in any of the places tested, yes it would show. It often shows in places you don't feel anything yet. It is not necessary to test every symptomatic area.

I am not sure what the doctor meant by active but many times physicians say cautiously I see no signs now because no one can guarantee a person will not get ALS sometime. No one is immune for life, even though ALS is rare.

If the doctor sees weakness and atrophy I do not understand why that is not being pursued. A normal EMG points away from ALS but confirmed clinical weakness and confirmed atrophy would need follow up. Hyperreflexia and a mute Babinski are normal variants though.

Stop asking your doctors about ALS and ask what is wrong with me instead

 

[Clearwater AL]

Swede, there nothing more I can add concerning your symptoms.

Maybe one of the other members may chime in here.

Like I wrote before... ask for another EMG. Tell them where YOU want the test done... if that will put your mind to rest, even then it will be a "maybe" if you get the same results and THEN go back to Dr. Google.

Also as I wrote before... you have health issues that could be very well be curable and you could go on with the rest of your life. But... focusing on ALS is only screwing up your life for now.

Give your doctors a chance.

 

[The Swede]

I try to keep calm and as well try to be a good dad and husband but it's hard when I see all the changes on my body and barely can lift the kids. Called the neuro reception yesterday and described that the situation got worse and I wanted someone to check me again because I experience that a lot has happened since my last visit like a month ago. Got answered that it was holiday times and that there are no available apointments to make for a very long time. Even double checked with my wife and even she sees that my left buttocks and my left shoulder are noticeably smaller (so I'm not crazy). Also do not understand why they released me after the EMG test though I have both weakness and atrophy. I do not want to believe that EMG was done too soon and the doctors know what to look after, but now I do not know either in or out. The last addition came this day when I suddenly became weak in my neck. For the last 3 days, my neck has just cracked and it's hard to just hold up my head during the day. Thanks so much to both of you for taking your time to answer..I'm crazy here at home. Incredibly difficult to balance family life and a lot of worry about what's happening / Johan

 

[Atsugi]

Hi Swede,

I'll add my opinion now. Both Nikki and Al gave you good advice. There is something wrong, but I see no reason to focus on ALS. Thinking about ALS is wasting your time. Pursue other possibilities.

 

[The Swede]

Thank's Mike!
But looking for other possibilities feels like the only thing I do now ..and yes i'm worried and afraid but also trying to be realistic at the same time so i can not say that all symptoms are due to fear and concern. However,I think very much points to ALS and if it is I must have a very fast progression.
I have read a lot of different threads here and it seems that there are very many different opinions about EMG. Some say they can be done too early or that it does not show change unless you test the right muscles..So it feels like I have to try to get another EMG on the muscles that I want to test.

Just getting feedback from all of you makes me a little bit calmer (or not)
As we say i Sweden "tack så mycket"

 

[codyclan]

What threads are telling you that? Truly, it is very common for an EMG to pick up problems before one is even experiencing symptoms in that area. My husband was bulbar onset and his initial EMG showed issues in his hands and upper back and he was not noticing any symptoms there-- and in fact it was several months after his diagnosis before he even began to notice symptoms in those area. I know other folks here have similar stories.

If you don't trust your neuro, then, by all means find one you trust, but Dr. Google has made us all feel we are experts when in fact we are not. Docs know what muscles to test, really they do. You need to work with a flesh and blood doc to find out what's wrong, not one on the internet, but it does not sound like ALS.
Best wishes,
Tracy

 

[Bestfriends14]

I'll put my 2 cents in as a recent CALS individual. No, your symptoms do not "very much point to ALS", if at all. Period.

My husband's EMG shows dirtiness in his right leg but he has absolutely no symptoms whatsoever in that leg. Therefore, an EMG shows before symptoms.

It is his left leg that is weak, floppy and severely atrophied to the point that it is literally half the size of his right leg. The atrophy is very noticeable to anyone who sees it. He can no longer walk without a brace and the OT and PT want him to start using a cane going forward. This is what is called limb onset of ALS. Never once did he have all over tingles, pain, numbness, cracking or fasciculations.

Is this the type of disease you want to have someone on this forum confirm that you have? You do not trust doctors that have 15 years of education and training, nor do you believe others on here that say it doesn't sound like ALS. I'm not sure what else you need to hear. You're very, very blessed to have your health and what we all hope for anyone, which is longevity. Do go back to your doc, but, please, go live your life and forget this forum.

 

[The Swede]

Hi Tracy and Bestfriendstilltheend!
Thank you for your input. Sorry to hear about both your husband's condition. Of course I do not want anyone here try to confirm anything but I want to try to gather myself some info so I can try to understand what is happening to me and have something to come with when I come to the doctors again. Here at home it is hard to find info about ALS..which led me to this forum. Did not have a thought of ALS when all the symptoms began to come. It was later when I asked Dr. Google for help as I began to se the similarities . In what way do my symptoms not indicate ALS?
Do not take this the wrong way now because I fully respect your points of view and am very grateful that you will help me. But unfortunately I think its fits for my situation. (But again don't be mad now)

 

[Atsugi]

Johan, you've been given good advice by knowledgeable people. That's pretty much all anyone can ask for.

I've reread your posts to see if I missed anything, but no. I see no reason to be concerned about ALS. Some of the things you list as symptoms have nothing to do with ALS. Two things stand out as important:

First, the EMG carries a lot of weight. Since ALS is a brain disease that destroys certain "motor control" nerves in the brain, the EMG will see the disease before there are symptoms. EMGs can be wrong, but they are an important tool used by experts.

Second, you've been interviewed, physically examined, and in the care of experts. Those experts can see you personally and can read the nuances of every test. You said they are not interested in pursuing ALS and they are not interested in doing a second EMG. That tells me that the best, most expert, most informed opinion is simply "no ALS."

Don't follow Dr. Google. A little knowledge is a dangerous thing. Don't be led astray by people on the Internet (including here) who do not have personal experience and training with ALS.

I hope you can find doctors you trust.

 

[The Swede]

Thanks again Mike!!
Was by a doctor yesterday because I experience the symptoms getting worse. And that I have now also had a lot of twitches in the left side of the back by the shoulder blade. She did the standard tests with stand on heel and toe as well as checked reflexes that I already done several times. I find that my calfs reduced even more in size being more breathless and could not even make 10 squats when she askes me to. The doctor looked at my hands and even saw her atrophy at the thumb. There were no neurologists available but have a phoneappointment with one in about 2 weeks. So the only thing that happened was that I had to go talk to a psychologist about anxiety. So once again nobody seems to take me seriously. Though you clearly see signs of the body and what I describe. Maybe a stupid question but can ALS affect both legs and both arms and even other muscle groups at the same time? Is there such a process? Most people I read about its starts in one hand a foot or a leg and so on
Thanks everybody!