I wish I would have found this site before I started to google

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CocoStark

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Hi Guys! First of all I want to apologize for even starting this thread, I went through so many others that where similar but somehow I'm still concerned.

On December 28th It started with a really strange headache only on my right side which I had for a week I think, it felt like someone stabbed me with a knife. This happened a couple times throughout the day, after a week it just dissapeared and I thought it was a really strange migraine... 2 weeks after that I got leg cramps in my right calves mostly when I was walking my dogs, it felt really weird and my veins popped out. As a flight attendant my first thought was a thrombosis but I never got any swelling. About 2 weeks ago I started twitching in my right leg, right above the knee, this went on for 3 or 4 days until it spread to my whole body , from feet to tounge but just when I'm sitting or laying down, 5 days into this situation I started to feel pain in my right thumb and also got a constant feeling of having something in my throat... speech is clear and there's no problem swallowing food.

When the twitching all over my body started I got so scared that I went to the hospitals neurologie department to get checked out. The doctor did a quick physical exam but didn't find anything, also there wasn't any visible twitching at the time. I was happy he didn't find anything but when I was about to leave he asked me to do some more testing and said something about "to rule out ALS"
Since than I'm a nervous wreck 😬

I already had my blood taken and went for an NCS but for the EMG and MRI I have to wait another month. I showed the blood work to my regular doctor who's also a neurologist next to being a "family doctor" and I got even more confused, first he told me I can't have ALS because I'm so young (pretty lame since there are a lot of younger people suffering ) and he was overall just like no no no this can't be. Until he saw my tounge and was like oh wait , maybe come in for a EMG.

I'm really scared the first doctor used the word "ALS" like he would say maybe you have foot fungus 🙄

I know I have to do more testing but my question is does that sound like the beginning of ALS to someone ? I don't feel weak, I rode my stationary bike for 900 kilometers since the beginning of January, I think I lost 1 centimeter on my upper tight but no idea if it's on both sides or just one.

I'm not a native in English as I'm from Austria 🇦🇹 and a 30 years old female.

And thank you guys so so much for taking your time to read all this and helping so many people!

Greetings Coco
 
Hi Coco, it does not sound like the beginning of ALS to me. There are many possible explanations, some of which might relate to what labs you had or didn't, but meanwhile I would hydrate, keep moving, and try not to worry.

Best,
Laurie
 
Thank you so much for your answer Laurie, after that doctor mentioned ALS I totally lost it and can't calm down since then. Yesterday after writing this long text I started feeling some soreness in my right forearm which is now the forearm and biceps it seems strange to get all those different symptoms within a week. I'll push to get the EMG done sooner :)

May I ask you if its ok, yesterday I got my NCS done and at first I was relieved because the technician said everything looks fine and I'm above the average with my results, I was super happy until I saw that the NCS doesn't detect ALS. I assumed that if I'm at a point where I am twitching all over my body there would be something to see on the NCS 🤔🤔🤔

Ps. Super cute cat

Greetings Coco
 
A normal NCS rules out a variety of serious things, just that ALS isn't one of them, so it's still good news. New soreness doesn't make ALS any more likely.
 
Thank you Laurie, I really appreciate that you answered me.

I went for my emg yesterday, I'm just a bit confused about the procedure. Since I have the twitching all over my body (including tounge) and the slight pain in my right thumb is it weird the doctor only did the EMG in my legs? He did 3 needles, 2 in my thighs left and right and one in my right calf 🤷‍♀️ those are not the muscles that twitch the most, to be honest I can't say what muscles twitch the most since the twitching is so random 😅 anyway the Emg of those 3 spots was fine, I hope I'm just a nervous wreck after all !
 
First as Laurie told you it doesn’t sound like ALS

secondly it is not necessary to emg every area You said that your twitching started in a leg. They emged your legs. That is absolutely sufficient. They know what they are doing and where to look. Twitching is almost always benign anyway but supposing for the sake of argument it wasn’t do you really believe the legs twitching is benign and the other places are something else but coincidentally they all started around the same time? This is your anxious mind telling you lies. Don’t listen to it.

be happy with your results and go live a wonderful long life If you are unable to let this go discuss with your family doctor ways to deal with your worries
 
Thank you Nikki, really appreciate your input and of course you are right it would be really really strange if the twitching in my lower body and the twitching in my upper body have 2 different causes, I haven't thought about it that way.

I really try to let it go but this constant twitching is just driving me nuts 🙈

Again, thank you for your message and you are all so kind and always answer so nicely to all those hypochondriac postings (like mine)

Greetings Coco
 
I'm so sorry to even ask another question here, you guys are so very kind for sharing your expertise. I had the emg of my legs last Thursday and since then one muscle they did the emg on is buzzing (not the same twitching as I experienced before) usually the twitching was much better after i did some sports but even after i rode my bike for 25 miles the buzzing was there on and off. I wonder if the emg caused that?


Also, and I am very sorry to circle back to this even though nikki made totally sense with the upper and lower body twitching that started at the same time having 2 different reasons would be strange, I still have this constant ache in the lower knuckle of my right thumb that I just can't get rid of. I can't eat with joysticks anymore, its just super uncomfortable. I heard that pain in the thumb can point to ALS is that true or a myth? I just don't know if I should go back and request another emg in my upper limps.

And again I'm so very sorry to bother you guys, I think getting fired and being in constant lockdown is getting to me.

Greetings
 
No the EMG won't cause that.
Please go back and discuss your concerns with your doctor as it isn't ALS so our kind members have done all they can to help.
 
Thank you, didn't mean to offend anyone!
 
I'm sorry you were fired and feel trapped by lockdown. I encourage everyone to take properly-distanced/masked walks as often as possible, for physical and mental health.

You can massage your own thumb (toward your hand), use a heating pad, work up to light stretching/bending, etc. As so often is the case, much of your health is in your hands.
 
Hi you guys, I never wanted to come back her, you really gave me a good feeling about my problems having nothing to do with ALS. I tried not to worry and stayed off dr. Google. The reason I'm back is that I wanted to ask how fast muscle Atrophy normally happens? When my doctor saw me on February 3rd I remember that he looked at my hands and pinched my muscles to look for any wastage.

So fast forward today I went to see my primary doctor ( it wasn't the one that is also a neurologist, it's a doctors office that multiple doctors share ) I went for cold medicine, as I have a little fever and I also asked him if there's any muscle cream that he can recommend for my thumb because it's still hurting and nothing I tried seems to help. He looked at my hand and noticed Atrophy in my thenar and this made my throat tighten . He recommended that I go back to the neurologist.

What I wanted to ask you guys, is it possible for a muscle that I can still use to Atrophy within 22 days ? I have this pain yes but I can still fully use my hands.

Thank you very much and I'm sorry to bother you!

Ps. I'll put a picture of the hand down here, I marked the spot where the dent is with my pen
 

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Thenar atrophy is common. It's often associated with carpal tunnel syndrome, which is hardly life-threatening. Once again, this is the headache vs. the brain tumor. No, in ALS, you do not have an atrophied muscle that still functions normally, for any length of time.

If it's CTS, the neurologist may recommend exercises. There are plenty on YouTube. Or they might recommend a hand therapist to start you out. Surgery is usually not needed.

There is still no reason to think that you have ALS.
 
Thank you Igelb, I always thought the CTS would be somehow visible on the NLG and also a lot more painful 😅

It just drives me mad that on top of the twitching and muscle soreness now I can't stop looking at my hands :-( I have a dent on the side of my pinky as well but its a bit difficult to see on the picture but I'll try

Again thanks for your help
 

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Dents are not a way ALS is diagnosed. I can really see you are distressed and being hyper vigilant about everything.
It really is time to stop posting photos to us and work with your doctors for help in sorting what is what. Please understand that the people here are dealing with the worst terminal illness, and you have been given a lot of time and great responses. In other words, we have given you as much as this section of the forum is designed for.
We are not saying you have nothing wrong, but this forum is only for ALS and you truly do not have any symptoms that would make any of us think it for a moment.
I truly wish you the very best - there are many things you can work through with your doctor and other health professionals. There are also other forums that would be more helpful for your situation. We can't do anything more but wish you the best sorting things out.
Please do go seek help in the appropriate places from here forward.
 
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