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bold

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My problems started all 3 months ago. Everything was fine before. After some extensive jogging, my calfs felt stiff. Ok, thats maybe normal, i thought. But it didn`t disappear. Also, i mentioned twitching on both sides. After doing some more sports in the next two weeks, twitching was more extensive after it. Then my arms felt strange and my little finger on the left limb sometimes got "deaf" in night. I went to the neurologist, he did EMG in the left hand, and said it is the ulnaris nerve because of my work (software developer). But nothing serious. He asked me if I feel weakness, but I said no.

The next few weeks I googled a lot about twichting and weakness, and got more worried about ALS. In the next weeks I got all the symptoms i read about. I checked my body for weakness over and over again.

CK Value was checked and above 1000 (aber football and long bicycle tour and EMG), 3 weeks after it was normal again. But I had the feeling that my left leg was weaker then the other, that my arm is getting weaker, my stomach muscles felt stiff. In some positions i got pain in my shoulder. I was sweating a lot in the night or when doing sports. Standing or sitting getting more difficult, I get pain oder just trembling on my back. Also the other small finger on the right side is getting "deaf" sometimes at night.

My feeling until today is, its getting more worse everyday. When I speak or sing, I don`t get enough air. Also I feel sometimes some "blocking" when breathing. My tongue looks strange on the side, using laptop or phone causes my hands to sweat immediately and getting stiff. Since a few days, there is more saliva in my mouth. Fasciculations happen on my complete body on different parts (always very short), including pine. I check every movement if its normal or something strange. It feels like if i`m using any muscle, it gets tires very soon or start trembling.

In the 3 months, I visited 3 Neurologists. They did EMG of calfs,shin, biceps, hands. Benigm fasciculations were detected in the calfs. All other diagnosis was normal (CT, MRI spinal, EEG, ENG). They did not see any weakness. My last try is the University hospital next week. Friends and family don`t really understand, because they always say that i`m looking and doing stuff in a normal way. But in my inside, it does feel very strange. Docs say, that I have an generalized anxiety disorder. I can`t believe that, these symptoms are real and visible. I`m very worried.
 

lgelb

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This is the dilemma. If the symptoms are "real and visible," then we would expect friends, family and three neurologists to notice them, especially with your prompting.

So since you are a software developer, you understand flow charts, and the branch that you are on is that no physical impairment apart from your ulnar nerve issue has evidently been seen. So people are understandably confused when you keep trying to keep jumping over to another branch.

It may well be time to see a physio with an eye to alleviating your symptoms, with the reassurance that you will therefore be monitored and so it will be evident if actual weakness is setting in.

Best,
Laurie
 

bold

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Thanks for your reply. Well, today my wife noticed it. She was shocked. We went climbing, and I started immediately trembling in my shoulders. I could do some stuff, but way worse than some weeks ago. Everything feels so weak. Im very scared. I don`t know if something else then ALS can be a cause. One neurologist checked the B12 Vitamine, it was very low. I do now take some pills for that (since 4 weeks, 1000mg), but it didn`t help. It got more worse.
 

bold

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I went to the University Hospital with specialized on ALS yesterday. The professor (neurologist) did a long clinic exam on me, and said I don`t have ALS, 100%. He did not want to do EMGs and said, its my anxiety. I really want to believe, but my symptoms are getting worser everyday. I try to ignore them, but its hard. My hands are sweating or getting cold when i type or hold something. I have stiffness in both hands and the whole body, cramps and twitches in my pine when i talk or eat, every muscle i use starts to tremble or feels weak when using it. I really don`t know what to do from here. Can you guys suggest something to me?
 

KarenNWendyn

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You have now seen 3-4 neurologists including an ALS specialist. None of them believe you have ALS. Why would we tell you anything different?

I would suggest you go back to your primary care physician and get treated for anxiety.
 

bold

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I`ve have some anxiety therapy going on, but i`m still scared on the ALS thing, because symptoms are progressing. I`m pretty sure if have it.

Crampy and stiff hands, gets very sweaty when using (typing), extreme twiching in calfs especially after walking around. Short twichting in all other body part muscles, especially after using them. Need to breath often when talking. Twichting in pine starts after eating or talking. Tongue feels weird. Calfs and fingers cramp when playing drums. My right foot ankle feels dumb and less powerful (fear of falling soon), overall i`m feeling more weaker than weeks ago. Also my butt hurts like there are already muscles missing.

If I look at the symptoms, there is a progression and a growing weakness and stiffness, although i can do all things that i done before, but with less power/duration or pain in muscles. I feel like i´m dying a little more everyday.

Visit the neuro again, exam was good, did one EMG in my hand, Was ok. He send me to another neurologist clinic (I demanded it) because of my fears. I will be there on monday for more intensive checks (hopefully).

I fear the tornado that is coming, for me and my family. 4 Months ago everything was perfect. We were the perfect family. Life was good to us. We traveled a lot, in 2017 we tripped 6 Weeks through Western Canada (looking at those fotos makes me cry a lot). I was a sporty funny guy. If family members had fears, that would came to me and layed on my shoulders.. I was the big rock in a stormy sea. Now i`m just a remaining little stone.

Everyday i`m on this website, reading stories and threads. I`m not interested in my work (loved it ) anymore. Life hat dramatically changed. I want me old life back. But I know this will not happen. I see all the other people living there life as usual, this gets me angry and sad. Why me? What have i done wrong? I don`t want my family to get the disease. I don`t want them to see my dying.
 
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Nikki J

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I think this is now 5 neuro exams and 2 emgs that say no ALS? Please realize you are posting this to people who have been told yes it is ALS. We all want our lives back and worry about our families

Please don’t post again until you have a report from your next consultations
 

Bestfriends14

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Please do not come to a forum of terminally ill people and their caregivers, moaning about how you're losing your life. You're not, but the terminally ill folks here have been told they are. As such, looking to have the members here mollycoddle your generalised anxiety disorder is selfish and self involved. My apologies for the harshness.

You're the only one who can give you your old life back; every move you make to better your mental health is up to you. Now please, move on and seek answers from a site that is perhaps better suited for your needs and whatever you have going on; It's definitely not ALS. Be grateful for that instead of desperately searching for why you think you have it. You don't and that's a good thing.

Good bye and good luck to you in your life.
 

bold

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Sorry for bothering you again. I`m really not shure that its "only" anxiety.
I went to the clinic, they did an EMG and short clinic exam. They said I don`t have a motor neuron desease, but anxiety disorder. But on the EMG it says "decreased interference pattern with small amplitude, mostly because of not reaching maximum of power." (translated from german) I don`t understand this. I pushed very hard in the exam. Could it be a sign of clinic muscle weakness? I thought an decreased interference pattern is not good. they did the same muscles than in the last EMG (2 months ago, calm and biceps), there weren`t any of this pattern issues.
 

ShiftKicker

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Bold- they told you that you do not have motor neuron disease. This is wonderful news and I am so very happy for you. It means you can leave MND behind and focus on working on relieving your symptoms and continuing to seek help for your worry.

This forum is focused solely on supporting people with that disease. It is not to be used as a general health information resource. If you have questions about your specific results, please ask your neurologist or family doctor.

I am closing this thread. Please do not continue to post questions here, as this forum has a focus on ALS and should not be used in place of proper medical attention.
 
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