Been to drs/neuro worried to death

[swedishkafka]

First and foremost: i have a huge amount of respect to what you are doing here, and I will try to keep this post to the point, I really appreciate any and all input here.

My story:
Never had any health issues or been treated for anxiety and/or depression.
Im 33 years old Male.

One month ago I was taken by ambulance to the emergency room because of dizziness and light headyness, I thought I was going to faint. I had tingling in feet and hands at the time of the ambulance transport. Staiyed emergency room for 2 days, ran all standard bloodwork, theoroid (is that what it is called), ct of the Brian w/o contrast. Heart ultrasound, lounge x-ray. All came back fine. During the stay i had continued periods of dizziness that come and go. Also had a slight percieved weakness in right arm/hand/leg/foot. No clinical signs of weakness. Also had a burning/tingling scalp. This went away after 1-2 days. I was discharged drs Said it could be stress/virus, but since i was feeling better and because all checks came back ok i was sent home.

Home for 1-2 days all felt fine as usual, Did a workoutroutine in the morning 2 days after hospital visit, just standard nothing extreme for 10-15 minutes. The day after I had extreme aching muscles like a workout pain that was in no way in comparison to the workout I did. At this time dizziness and burning scalp returned. Since then I have had these symptoms come and go and big varition in intencity:

Burning scalp
Burning skin on back and shoulders
Perceived weakness in all arm/legs with a concentration to the right side. Not clinical yet (however worse now one month later than before i usually Walk 45 minutes/day but now have trouble with 5-10 minutes, then I'm worn out especially in right leg.)
Weakness in neck (i need to have my head against something mist of the time otherwise my neck/shoulders get sore.
Sore collarbones (especially right side where i feel sore to touch and have a slight bump that i had not before)
Percieved wierd feeling during biting, its like my bite is different than before.
Percieved weakness in thounge/throat.
Percieved trouble swallowing (i can still swallow fine but it just feels as the muscles are weaker in this area somehow) this warries day by day.
Electric toe (when i bend the major toe in right foot electric shoothing feeling in
Foot)
Muscle jumps all over body a couple of seconds in arm then a couple of seconds in leg, etc (sorry don't know the correct word)

All this above has warried in intecity (including weakness) some things has gotten better with time like burning scalp diziness, however weakness seem to be back now more than ever.

I've been to gp ( think its stress) done the neuro exams no signs of anything. My dad is a gp and think its stress/virus, he also Did neuro exams no signs. Also been to neurologist who Did neuro checks (only exams no emg etc) he Said that he was 100% it wasn't ALS. Did not recommend me for any more checks at this time (since I came without insurance and had to pay for that) he said the chance of finding something on further checks was microscopic so I waited)

Still cannot really leave this i feel so weak. I'm going back to gp in 1 month. But at this time it is treated as stress reaction. I havent felt perticurarly stressed before this (no im super stressed and hypocondric)

Does this sound like als? What is your thoughts? I really appreciate any input, I hope I don't go crazy over this.

Thanks

 

[Dusty7]

No, it does not sound like ALS.

No clinical weakness. Tingling, burning, electric shooting pain in toe--all are sensory symptoms and ALS is not sensory.
Neuro being 100% sure it's not ALS also means it's not ALS.
"I hope I don't go crazy over this" tells me that you are feeling a tremendous amount of anxiety over this. Settle down. Stay off the internet. Anxiety making you crazy is not going to help.

 

[swedishkafka]

Thanks dusty, your answer is really appreciated. I admire that you guys take the time to answer the anxienty ridden people.

I have thought of the progression here, and it is not how als progress right? Also the dizziness does not really fit in anywhere.

Anyone have Any ideas except als?

Maybe its just anxiety (which i now have a lot of, but normally not at all)

I don't really feel I recognize myself during this time. Thanks again.

 

[Clearwater AL]

You wrote that your father is a GP. Apparently you dismiss his 'professional' opinion. Your neurologist told you he was 100% sure it is not ALS and you seem to dismiss his 'professional' opinion also. So, the question is... what brings you here?

 

[swedishkafka]

I understand your criticism and maybe I'm just anxious and paranoid. I just feel that there is something seriously wrong with me, and no offence to gp:s but they do usually do not come in contact with a lot of ALS patients. I'm sure my dad and the other gp are good drs, but they all work with statistics, and pretty much have a blind eye to perceived symptoms (and maybe that is for the best). I guess my perception of my symtoms are so strong that o somehow doubt this. If i where a dr and someone came and asked do i have als? I would probobly also instinctivly answer no because of the pure likelyhood. I think my dad has been involved in treating and or diagnosis of 2 people with als in a career of 40+ yrs. I have no idea about the neuro but eh is reputable. But i know you guys are not drs, but i still think in terme of knowledge about the specific symtoms and perception you are a huge resource. Maybe what im experiencing is nothing like als, only thing i can do is read symtoms of off the internet, but it's hard to make the big picture, progression etc.

Im just doubtful because of no emg i guess, because how can neuro be sure without emg? Maybe im just Holdingbolag on to anxiety here but that is what i think.

I have tremendous respect for you guys and im cant imagine the jorney you are on. Maybe its unfair of me to come dragning my anxiety on you, im sorry, im just scared i guess. Again sorry.

 

[Mediasmart]

I just feel that there is something seriously wrong with me, and no offence to gp:s but they do usually do not come in contact with a lot of ALS patients. I'm sure my dad and the other gp are good drs, but they all work with statistics, and pretty much have a blind eye to perceived symptoms (and maybe that is for the best). .

first no one was criticizing you. you hit the nail on the head that "do not come in contact with a lot of ALS". Few physicians do as it is rare. But their medical degree probably trumps your medical degree so I'd listen up to them.

This would be I think a world's record onset if it were ALS but clearly it isn't.

Most of us only see a doc every 3 months and the progression is, well, slow for the most part. So my suggestion is that you come back in three months and report in. Otherwise, please try and chill a bit.

 

[Clearwater AL]

You wrote, ("my dad has been involved in treating and or diagnosis of 2 people with als in a career of 40+ yrs. I have no idea about the neuro but eh is reputable.") Again, you are doubting two very professional opinions. I was not expressing criticism... I pointed out two almost glaring facts. Your anxiety is overwhelming your common sense to deny your father's opinion (40+ years of medicine) and your neurologist's opinion (highly educated and highly trained in neurology) then come here, admitting you suffer from severe anxiety, apparently just looking for someone to talk to. Maybe you'd find better conversation in a Forum dedicated to issues concerning psychosis, anxiety and OCD.

 

[swedishkafka]

Thanks for your input, i really appreciate it. I have talked this through with my dad, and I will be calling a psychiatrist tomorrow. There's a first time for everything I guess.

Again thanks, for your feedback.

 

[Dusty7]

Congratulations! I think you have made a very serious and sensible decision. I think your symptoms will subside after your and your new doctor get your anxiety under control. Then you and he will be able to see what you are dealing with. Congratulations again.

 

[swedishkafka]

Thanks Again for your support. Im i. Contact with a psychiatrist for once a week sessions.

However im still very concerned with my symtoms. Most have insedd subsided, however i still have some left (even when i manage to chill for a couple of days).

What im still having is:
Right sided weakness (leg/foot and arm/hand and shoulder)
Sore muscles (especially to the right)
Muscle twitching all over, maybe more to the right.
Some nights it feels like my fingers and toes on the right side want to curl up.
Still tingling in foot and hand.
Burning/itchy scalp.
I think I have more like acne in the scalp.
When I wake up in the morning I feel some days a extreme tiredness (not in my mind more in body, hard to explain, like someone drugged me the night before)

I was so frustrated with my hand and arm one day that I took a big rock and did reps over my head first with the right arm (35 reps til complete failure) and then left arm (42 reps til complete failure) I was very sore I the muscles for 2 days after with a big concentration of soreness to the right side. I also had a very strange spasm in my right thumb shortly after this excercise (when I bent the thumb 90 degrees I couldn't stop it from shaking.)

My weakness can be described as I feel tiredness/awkwardness when I do some things. When i click the mouse with my index finger it feels harder than before. I Can still do it though. I feel tired in right foot sometimes when I use my car pedal. Also sometimes tired when I walk. Especially right side.

I'm still worried, I look forward to any and all comments.

 

[Nikki J]

Your neuro, gp and dad have given you professional evaluations. Members here have given personal opinions you need to follow up however the professionals recommend. I can tell you in my experience as incredibly early detected onset of ALS I don't "feel" anything unusual. My problem is in my leg and it feels fine but sometimes it doesn't hold me up and I fall over! And the only twitching is in that leg and it started after the falling.

 

[Atsugi]

Hi SwedishKafka,

You've done well to establish yourself with a psychiatrist. In a short while you'll have a grip on this.
My wife was a doctor who died from ALS, so I've got some idea of the symptoms: you don't have ALS, for sure.
You don't need an EMG. The neuro ruled out ALS on exam.

I'm amused by your clever screen name--Swedish Kafka. Perhaps your subconscious knows exactly what's going on. LOL!
I wish you luck. Don't come back. Enjoy life to the fullest. Best wishes.

 

[MaxEidswick]

>I'm amused by your clever screen name--Swedish Kafka. Perhaps your subconscious knows exactly what's going on

I was also -- a Metamorphosis -- a lot like the way yI feel when I wake up ...

 

[Christopher]

Hello man.

Im not in here so often nowdays, and i know what you go through. I got same symptoms like you have, plus alot more. Dont let this ruin Everything, like it has done with me.

My symptoms:

*Faciculations tounge
*Carpel Tunnel Syndrome
*Small Hyper Reflexia
*Burning nervepain both legs
*Twitchings ALL over body
*Sciativa Nerve Pain
*"Weakness" hands, legs, neck, shoulders. But can still go out run 20 minutes, walk stairs, open bottles, Everything. No problems with this. so NO Clinical weakness......
*Constant yawning
*Exercise intolerance
*Been having these symptoms since 11 month back.


Doctor havnt find anything, except faciculations ALL over body, and small hyper reflexia. Because of my extreme anxiety in 10 months, my body hormones has stoped to work properly. My Cortisol levels, vitamin levels, thyroid balances does not work properly now, because of constant anxiety. And i have gotten "Chronic Fatigue Syndrome" because of all anxiety.


I have quitted work.... I dont hang out with friends so much anymore. This anxiety over ALS, has ruined my Life. And i am STILL worried to Death. I keep tell myself, that i have ALS. because i Think that i am upper and lower signs, even if docs says NEVER to ALS. If your anxiety goes out of Control, go talk to someone and take care of it... I wish i did I am now.... Good luck.. Lycka till, jag är också svensk... Denna ALS ångesten.. är så farlig...

 

[Atsugi]

Christopher, du inte har ALS. You don't have ALS.
*Carpel Tunnel Syndrome -- this is the opposite of an ALS symptom
*Small Hyper Reflexia -- not ALS
*Burning nervepain both legs -- this is the opposite of an ALS symptom
*Twitchings ALL over body -- Never heard of this being ALS
*Sciativa Nerve Pain -- has nothing to do with ALS
*NO Clinical weakness -- so it's not ALS
*Constant yawning -- absolutely the opposite of ALS