Need help

[Owen25]

Hi my Name is Paul i am 24 years old born 03 of January 1990 I have joined this forum today after moths of suffering and problems ill explain how this all started on the 13 of February this year i went to sleep after a long shift in work when i awoke i had unusual pain in my eyes the symptoms went on for a long time till i went to Doctors to get it checked out i went for a eye exam and they couldn't find what the problem was so i put up with things until my sight got worse my vision started to wobble and flash all the time so i went to A&E were they did a brain MRI which was all clear so i just put up with it hoping it would go on its own a few days went by when i awoke one morning to a feeling of being on a boat rocking this feeling went on for 3 weeks at least 24/7 till they somewhat went away more or less still get it from time to time the doctors did not have a clue what was going on thought maybe it was a inner ear infection gave me meds which did nothing to help almost straight after the strange unsteady feeling i went threw a few weeks of very bad pins and needless all over my body they were there nearly all the time but more so when i exerted myself so then my doctors did all kinds of bloods to see what they could find but all my bloods were fine they tried all sorts of different meds which didn't agree with me so i decided to stop them all and see how things went all this time i was off work and feeling very stressed and unwell with all the strange things that kept going on day and night so 4 or so weeks ago my body started jerking on its own all my limbs and back would jump like the feeling you get when you go to sleep but this was all day it was when this started to happen i started to feel muscle twitching all over my body worse in my feet but over the weeks they were every were some i feel and see most i can see but cant feel went back to my doctors and said enough is enough i need to know whats going on with me so she said lie on the bed ill do a exam on you she done the exam and at the end she said unfortunately that didn't go as it should i asked what she meant she said i had brisk knee reflexes and she said when she scraped my feet there was no response and a few weeks before there was she also said she seen what she called fasciculations which need to be investigated so she has made me an appointment with a neurologist in the Walton neuro hospital Liverpool which is on the 5 of June since i went to see the doctor i have been having alot of problems with my breathing which seem to have come on very fast a feeling like i cant get enough air nearly all the time now and a lump in my throat when i sleep or eat also a thick tong feeling and i mess up my words alot i get really tense forearms and my left hand is feeling stiff and slow since all this i have been doing alot of research online and alot of my current symptoms seem to fit in with ALS which has me very scared but i have come to accept that something defiantly wasn't right me and my partner have been through so much with all this we are both burnt out i spend most my days scared of my future and what is next i am asking anyone on here not for reassurance but maybe support and details of how they felt and were diagnosed with this condition i am in the worst place i have ever been in life and am at the end of coping thank you for taking the time to read this.

Paul

 

[Dusty7]

Paul, while you say “a lot of my current symptoms seem to fit in with ALS…” I would say that most of them don’t.

You mention “…unusual pain in my eyes… my vision started to wobble and flash all the time… feeling of being on a boat rocking… [which] somewhat went away more or less… very bad pins and needless…”

Most of these are sensory symptoms. ALS does not involve sensory nerves, only motor nerves which are the nerves that control the skeletal muscles. Typical early signs are clinical weakness (read the stickies—click on “Do I Have ALS? Is this ALS?” at the top of the page) and atrophy. And ALS symptoms don't go away.

While muscle twitching (fasciculations) can be seen in ALS, it is far more commonly from too much caffeine, fatigue, anxiety, etc. I don’t believe the lack of a Babinski sign (the test where she scraped the bottom of your foot) is indicative of anything; so long as your toes didn’t flex up, you pass the test. The “breathing… lump in my throat… thick tong feeling..” I would venture are from anxiety, but they will be evaluated in your neurological exam where the brisk reflexes will be evaluated. Brisk reflexes can be indicative of a number of things (and possibly nothing), but whatever might be causing your symptoms, I don’t think it’s ALS. Try to relax and let the neuro do his job when you see him.

 

[Mediasmart]

Your concern is of course noted. However, that is "onset at a gallop" most of the stuff you describe doesn't sound like mine or most others I've read about here. Of course, keep your June 5 appointment. In the interval until then, I strongly urge you to go see someone about anxiety issues. Keep careful notes; a diary perhaps, so you don't miss anything when giving your neuro your history.

You must know ALS is extremely rare for folks your age. That, coupled with Dusty7's observation about "coming and going" is not an ALS option. When you hit the "today is like yesterday - no better or a little worse" then worry.

 

[Owen25]

Thank you for both your inputs the symptoms i first started off with have all but gone i know sounds strange as they were very intense but when they resolved it was then the muscle twitching started small parts of my body at first but then they went all over i wasn't overly concerned about them as i had never heard of mnd before but went the doctors anyway it was the when she did the reflex tests and explained her concerns both my legs shot right up like ive never known and the no response with my feet she had done all the same testing a few weeks before when it all started around the 13 feb and she said they were all normal then so the change is what concerned her so doing my own research at home came up with all the als symptoms witch then i realized i had other symptoms witch i gave no thought to cramping forearms which never go they feel so tight like they are pulling in my fingers all the time problems with my left hand like stiffness but the most scary of all my symptoms is the breathing it came on slow at first like when i went up the stairs id be out of breath more then
usual and took the dog out id be breathless more so then i used to but it is a constant thing now it eases when i lie down but when i move about it gets bad the lump in my throat never goes now it was more of a night at one point but is there always now i went to doctors yesterday with the breathing concerns he listened to my chest and said it sounded fine but he is sending another letter to Walton to try speed up the appointment these are my current 24 hour symptoms i am still off work spending my days trying to make the most of things i love my life and my partner Rachel but whatever is going on it is what it is but still a tormenting feeling but the way i see things in life is no one deserves any of the bad things life gives them and life is not fair i am no exception i hope it turns out to be good news but i am almost positive it wont be what i don't understand is the speed of witch all the symptoms i have now have come on but i am no doctor if it is mnd i just hope it doesn't kill me soon so i can at least have some life before that happens but i just take the days one at a time at the moment its my twins wedding tomorrow so just trying to get my had together to enjoy that as much as i can without gasping for air feeling all the time thank you for taking the time to read my posts.

Paul

 

[Clearwater AL]

Well... it's not ALS. So, enjoy your twins wedding... (I'm assuming a twin brother or sister.)

Check back in with us after your Neuro appointment. No need to post anymore of your symptoms. Be sure to write every one of them down for him/her to analyze.

 

[Atsugi]

Paul, I've carefully read every word you wrote and considered every symptom you listed. None of it says ALS.

The "internet diagnosis" is misleading because so many people, like yourself, have entered their symptoms into the Do I Have ALS section that google thinks all these symptoms should lead to this website. Your symptoms are not ALS. Nor do they sound like any fatal disease I've ever heard of.

Congratulations, you aren't dying. Now stop worrying about it. Good luck with your doctor.

 

[Owen25]

I will repost when I get answers from the neurologist right now ill battle what's going on and enjoy each day with my partner thank you all for your time it means a lot to me

Paul

 

[Kosmoskatten]

Some people have a silent babinsky, and that is considered normal as well.

A sudden onset of vertigo and flashes before your eyes could be an inner ear infection, but even this could just be stress. The breathlessness and lump in your throat are both common anxiety symptoms, and I have heard more than one anxiety sufferer complaining of a thick tongue.

Get your anxiety in check, best of luck.

 

[Owen25]

Hi just an update my breathing has been getting worse day to day and my weakness in legs and left arm are getting more and more i wake in the night and both my arms are frozen and i struggle to get them to move the twitching is all over like crazy i went back the doctors and my neuro app has been moved to this Monday at 9.00 am am really scared of what is next seem to be getting worse by the day but looks like ill have to wait till Monday for answers now any advice would be great thank you.

Paul

 

[Atsugi]

Good luck to you. Hope you'll share your diagnosis with us when you get it.

 

[Owen25]

Hi i went to the appointment he has orders blood tests and a nerve study test really worried as i am feeling worse all he time feel like know one around me understands i hope i get some answers soon.

 

[Owen25]

Hi don't know if anyone reading this could give me any advice I feel am getting worse everyday walking around is becoming hard my leg muscles are feeling weaker everyday my shoulders burn over the littlest thing I do and my left hand is getting more and more stiff the twitching is getting crazy all over it is worse at night and waking up at night to frozen arms is scary not to mention the nightmares am having I wake to a horrible shaking feeling but the breathing problems come and go more when I exert myself doing anything it's all happening so fast it's scary I try to do anything to take my mind of it but it's very hard each day is more of a battle then the last does anyone know if als would be this fast or could it be anything els thanks

Paul

 

[MaxEidswick]

see a shrink

 

[Owen25]

I am currently seeing a psychiatrist he is waiting for test results before we move on he gives me diazepam sometimes helps but finding things very difficult at the moment.

Paul

 

[Clearwater AL]

You have dragged this Thread on through all of your symptoms and you're NOW telling us you are seeing a psychiatrist? Please leave this Forum and follow up on your psych appointments and find a more appropriate Forum... for psychotics like yourself. No one here can be of any further help to you... you do not have ALS/MND. This is an ALS/MND Forum. Hope you recover from your real illness.