Old 10-23-2017, 03:34 AM #1 (permalink)
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Default Very scared, symptoms getting worse. Please some advice

Hi guys

To begin with - sorry for grammar. English isnt my first language.

Ive been reading on this forum last month and Im truly sorry for you who must live with this absolutely terrible deseace.

My story is quite long and I do understand if you thinks that this is just another twither but I would really appreciate if you could read my story and tell me a few words about what you think since I cant stop thinking about it.

My journey started in November 2016 when I begin to feel pain in my upper parts of my back, neck and shoulders. I thought it was due to a new excersise and stopped with it. I didnt get any better and I went to see a chiropractor who I met for 7 times and he did alot of cracking to my body. After 7 times with no improvement he said that it wasnt any idea to continue because I didnt get any better.

January - my body started to twith, here and there and really big twithing in arms and legs, stomach and back. Dumb as I was - of corse I googled and there I was - ALS. Went to my doctor (who is also an arthopedist) - he did a clinic exam that I passed but did say I had some trouble with my reflex in my right knee, it was not as "good" as on left knee and he had some trouble to make it react.

I asked him about the twitching and back pain and said that it was probably stress but ordered i MRI on brain, neck, and back which come back clean. It eased my mind until I read that MRI is to sort out other issues that causes the problems. Asked him about ALS and he asked me "what is that?"..

The months passed and I continued to have pain in my back and the twitching switched nature to be smaller and every hour of the day and was around both my legs, my elbows, shoulders and back - always at the exact same spot.

Then in May i visit another doctor (no neuro-doctor) - did a neuro exam and passed again. Said that is nothing to worried about and said that its probably stress. Ordered some blood work and everything came back clear.

The summer past and it felt quite good - but the twitching continued and my back continued to hurt.

Then i september, I started to feel "wierd" in my right right (dominant) arm. Felt a bit weaker, cold and at the same time a burning feeling and felt the same in my right calf (in exactly the same spot as the twithing, both in arms and around knees). Didnt bother about it and thought that it would pass. but it getted worse, and I started to fel pain in my little finger on my right hand. both my thimb started to move by itself like big twitching toward my palm.

Went to the same doctor who didnt know about ALS but send me to do an EMG on my arm. Havent done that yet but going to this Thursday. New twithes in both hands as well.

After this both my arms felt like a burning sensation, and both my legs. Comes and goes. Also having a wierd feeling in my throat - when speaking alot I have to yawn and pause to get air. Wakes up at night and it feels like I havent swallowed for a long time and have to swallow 2-3 times before I can fall asleep again.

The most wierd thing is that I do feel quite calm after seeing the doctors (but havent seen a neurologic yet) but I continue to develope new symptoms and non of the earlier symptoms dissappears.

So since January - Twithing at the exact same spots - shoulders, arms (around elbows) and legs (thighs and espacially around knees). New twithings in hands between thumb and pointfinger, both hands). Looking in the mirror I think that my right arm is smaller aroung the shoulder and especially my triceps. (other people confirms the difference).

26 years old and hacve been active all my life and training alot. Climbing, racket-sports, running etc. Still able to do those things, but not as "hard" as before.

Im seriosly worried and cant get ALS of my mind. Been to therapy but it doesnt help. I would really appreciate to hear what you think. Should I be worried?
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Old 10-23-2017, 03:37 AM #2 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

and I also forgot - I have a large amount of phlegm i my throat with ends up with that I often have to "hawk" (A few times per minute to clear my throat).

Off corse I dont hope it it ALS and that you cant diagnose me, but I need you to be really honest with what you think.

Thanks again,
best regards
Peter
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Old 10-23-2017, 04:21 AM #3 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Nothing you wrote has anything to do with ALS. For a detailed explanation 'why,' read the sticky post stuck at the top of this forum, called "Read Before Posting".
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Old 10-23-2017, 04:38 AM #4 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Hi Atsugi!

Thanks alot for you reply. Actually, Ive have read the sticky several times. It feels a bit "better" after reading it. But my fasciulations that starting in other parts together with pain and "wierd" feeling in arm/leg/thumbs really concerning me and freaks me out. I have had a bad posture since last year do to my pain in back/shoulders and my head often points down. Dont know what indicates "drop head" but wonder if this can be it? Or if you have drop head, you cant lift it at all?
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Old 10-23-2017, 07:50 AM #5 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Hi again,

There is a few symptoms that I missed out in my first post. In my right hand (dominant) - I have like buzzings (?). Feels like vibrations from time to time - and the same in both my feets. Especially when im relaxing. Exept from buzzing I have a constant tingling feeling in my right arm aswell.

thanks
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Old 10-23-2017, 03:46 PM #6 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Peter, the EMG will illuminate any reason for concern. We don't know if your arms differed before the twitching, and many other key facts. From what you describe and your age, MND is very unlikely.

Best,
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Old 10-23-2017, 11:59 PM #7 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

“Pain, buzzing, tingling, weird feeling, burning sensation, comes and goes, feeling weak”

Our sticky post pretty explicitly says these things are not ALS.


26 years old? ALS is a disease for 40+. Average 65.

First “doctor” you saw was a chiropractor. Don’t do that. They make you feel better, but they are not doctors of anything.


Next doctor was an orthopedist who didn’t know what ALS is. It’s time to see an internist, a family physician, or any MD or DO who is a primary care doctor. Let them decide which specialist to send you to.
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Old 10-24-2017, 11:28 AM #8 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Hi again,

My biggest thank you for you replys.

I know its unlikely that is is ALS but what concerns me is that the progress seems to have developed slow over a year.

Back pain och muscle twitches - thats OK but when Í get more and more symptoms I get scared. The latest months I think I have developed all the rest of my symptoms except for the twitching and back pain. Non if it gets better.

At the moment (last couple of weeks) Ive been yawning alot (especially when I talks more) and it feels like I must yawn to get air.

And it feels like my jaw "locking up" when talking alot, gets really stiff. Another problem that I noticed is that when im trying to sit with good posture it becomes more difficult to breathe.

Im nerveous since I havent seen a neurologist yet, and the doctors Ive met (at primary care) dont know what ALS. Im having real trouble sleeping, wakes up several times during the night...

Do you hear anything in this that sounds like I should be worried about ALS (other than my age). Thank alot to you who reading
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Old 10-25-2017, 10:12 AM #9 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Hi again,

Im so so sorry to bother you but my concerns och symptoms is driving me crazy

My left thumb i twithing big time! towards my palm. Wish I could film it to show you, its super scary.

I do also have a specific question about cramps. I have cramp-feelings in both my calfs. Not as it comes a major attack, more like its in the background all the time, but gets worse when training and walking. Does cramps in ALS feels this way or is more like major attacks? Some different for cramp early and later in the progress?

All those symptoms killing me and I don´t know what to do . I dont think this is anxioty, because I feel quite calm. BUt it scary when i feel my hands and fingers getting more stiff, a some light kind of pain aswell as the fascics continue its journey. Starting on more places on my body, but dosnt stop in other places...
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Old 10-25-2017, 11:58 AM #10 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Just to correct something you just wrote: "I feel quite calm."
No you don't. You feel scared and confused. It's killing you emotionally. Read your post. That's anxiety.

Cramping and twitching are exactly what my body does when I'm under emotional stress.
On more than one occasion, when I was given a big important project at work, my belly or my back or my neck would cramp up so badly that I would have to see a doctor to get medication. Anxiety causes the body to hurt, burp, fart, twitch, cramp and more.

I can't diagnose you, but I don't see any reason to think about ALS.
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Old 10-26-2017, 03:55 AM #11 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Hi Mike,

many thanks for your reply. I do understand what you mean with that I am really anxious, but the last week I have felt a lot more calm than I did i month ago when I truly was 100% sure it is ALS. Then my mind goes somewhere else thinking that it cannot be, its too rare in my age.. When I having those thoughts and feeling calm, non of the symptoms getting better. The faciscs continues as allways, and the thumb continues the twithing towards my palm.

I do have another questions - is soreness related to ALS? Why I wonder is because everywhere where I have my twitches, Im also sore in the same muscles - especially if I lay some pressure on them.

Feels exactly like heavy traning soreness without even training? Its all very scary. Cause when the twitching started to begin i the beginning of this year, I had no soreness at all, and I could train as normal without training soreness I now Im sore in the twithing muscle without traning. This is in both my upper arms (shoulder parts) and thighs.

And I do also have another question about bulbar issues. My throat becomes very "warm" when inhaling air, every breath i take toghether with a lumb that doesnt go away, its there 24/7 and have been for the last several month. Last 3 weeks the phlegm in my throat has affected my speech as I everytime I talk must hawk and yawn..

I know you must think Im hysteric, but I cant work properly and thinking about it all the time.. Im truly wish that I would'nt be here and take your time but you have alot of experience about this and I dont and I truly listen and reading what you are saying carefully.

Best regards,
Peter
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Old 10-30-2017, 05:32 AM #12 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Hi guys,

Just want to give you an update. I was doing an EMG-test this thursday and the doctor said that everythings look normal. He did the test in both my calfs, my hands and arms. I could not see any fascics at all, wich is strange to me but anyway - I feel calmer since I read in many threads here that if you have an clean EMG = everything points away from ALS. The twiching is continues anyhow, not more and not less either.

But - I still wonder. I still have a lot of pleghm in my throat and my cheek has become very stiff and its like I do have something in my throat that makes it harder to talk. If a talk alot I get tired in my cheek and my tounge. But I cant feel any twitching in my tounge, so I dont think I have it. Could the twithing all over arms and legs together with the strange throat-thing be related to ALS? Can the bulbar start this way?

I would really appreciate an answer if you have the time!
Best regards,
Peter
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Old 10-30-2017, 08:57 AM #13 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Peter,
Health anxiety can be crippling. Have you told your doctor about the other issues you have and your fear of bulbar onset?
You might want to speak to your PCP or GP about a referral to a psychiatrist. They might be able to assist you further.
Angie
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Old 10-30-2017, 05:19 PM #14 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

I seldom reply here anymore.

But... we've had 2. 3. and 4 page Anxiety Threads in this "Do I Have ALS" sub-forum. It's not an Anxiety Forum.

You've heard from more than one member telling you do not have ALS.

Here's the proof as you wrote,

"Just want to give you an update. I was doing an EMG-test this thursday and the doctor said that everything looks normal."

And... you,

"I feel calmer since I read in many threads here that if you have an clean EMG = everything points away from ALS."

You're good to go... best wishes.
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Old 10-31-2017, 03:36 AM #15 (permalink)
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Default Re: Very scared, symptoms getting worse. Please some advice

Hi Angie!

Thanks alot for you answer, both of you!

I cant really let it go since the symptoms doesnt improve at all. Really wish that the neuro can rule ALS out when I see him i November. I dont know how good the knowledge are about ALS in Sweden when you see a neuro. So is there anything you think I should ask in particular? Something that is good to ask when doing an neuro exam? And maybe something that could reassure me? I really dont dont want to miss anything out when I see him, its super hard to get an neuro appt in Sweden since there are no private hospitals. I have wait since January this year.

Thanks a lot and my best wishes to you all.
Peter
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