Very quick question..

poosmum · 05-21-2012, 11:54 AM

Yes, i am back and still waiting for my neuro appointment so please forgive me in advance for my question, but i have no idea how long it's going to be until i see my specialist.

I've had my meds upped again - yet symptoms STILL persist. I am not anxious which is the bit that is bothering me.

My entire body still feels like it's buzzing and whats more scary is when i was helping my son do his homework he asked me hold out my hands with fingers straight out and mainly on my right hand (but left as well) each finger was independently moving (twitching) ever-so-slightly side to side on their own. Is this a symptom!? I did read (sorry i can't quote who), that a women held out her hands for a neurologist and he noted these movements and could tell immediately there was a problem.

My speech is still odd, my jaw is constantly tremoring, calf is vibrating, thumb and first finger has terrible pains in them and i still have the twitches and to be honest, yes i am still scared.

HelenL · 05-21-2012, 12:15 PM

Hi poosmum, what specifically was your question?

All other factors aside, there's something called Benign Essential Tremors (not sure of exact wording), both my husband and my Mom have it... NOT Parkinsons, or anything else, but in my Mom's case it also affects her neck. She can barely lift a cup or write.

Hoping you find a non-ALS answer to your search... anxiety will make everything worse, so please try not to dwell on it.

Alyoop · 05-21-2012, 01:37 PM

If your muscles on your hand are actually twitching, and not shaking, then it's myokymia.
A fasciculation is not strong enough to move a body part, such as a finger. Myokymia does. I get then off and on in my hands. Moves my fingers or thumb in a rhythmic pattern. It's NOT. Associated with ALS. My neurologist explained it to me a couple of years ago.

It can be associated with other neurological conditions such as MS, or completely benign such as in my case. One of the most common areas for myokymia is the eyelids and face.

Anja · 05-21-2012, 06:45 PM

poosmum, something is wrong, that is clear, but from what you write i don't think it has anything to do with ALS! ALS is about weak muscles, twitching can be part of the process in later stage, be glad you can stretch your fingers, i wish i could... Pain is NOT an ALS symptom... pain occures, but not because of ALS but because of the result of ALS symptoms... like when your fingers can't stretch that hurts like hell after a while, here it does...

wait for what your docter has to say, i wish i was in your place, might sound strange it is not, i might for sure have ALS or MMN, still need a few extra exams to exclude other issues (the EMG showed a obstruction) Same 4 my right leg, EMG showed obstruction, none was found.

Go relax, your story is different...

Take care!
Anja

Toto's Dorothy · 05-21-2012, 09:44 PM

Poosmum,

You're a glutton for punishment, aren't you? I believe someone told you to stop oo gl ing doc tor go og le and not come back until you have been di ag no sed with something! Turn off the D@RN computer!

poosmum · 05-24-2012, 10:01 AM

I'm getting more and more concerned. I'm getting worse.

Speaking is hard work, thats the only way i can put it, especially toward the end of the day. Everything feels like a tongue twister and i am slurring most words. My jaw feels heavy and its constantly 'chattering'. My tongue twitches (at rest) all the time. Tiny little twitches over the right side, like there is something jumping inside the tongue itself.

My head, if i turn it to the left my muscles all cramp up.

My hands are so shaky i can no longer thread a needle nor tweeze my brows.

glupavomomiche · 05-24-2012, 11:02 AM

Sweetie, if you don't find a way to see the doctor now and it's THAT bad, then go to the ER. What on earth do you expect paralyzed folks over the internet to do for you? Don't wait on a neurologist, go to your regular doctor and tell him you need an immediate referral to a psychiatrist for your health anxiety. Yes, that is indeed what you have at this point. Meds will help. Then when you calm down, you can see what, if any, of your symptoms are "for real" and go from there.

poosmum · 05-24-2012, 11:17 AM

This is where my worries are. I'm on meds, highest dose and I am STILL having symptoms.

I'm really scared.

Alyoop · 05-24-2012, 01:00 PM

It's actually amazingly simple

If you have had an EMG, including tongue, and it's normal, then good
If you have had a good clinical examination including facial muscles, and it's normal, then good.
If you have had swallow study and a review of your speech problems, and no abnormality detected, then good

If you have not had these tests, then get them.

If they come back normal, then you do not have ALS........simple

poosmum · 05-24-2012, 01:04 PM

Quote:

Originally Posted by Alyoop

It's actually amazingly simple

If you have had an EMG, including tongue, and it's normal, then good
If you have had a good clinical examination including facial muscles, and it's normal, then good.
If you have had swallow study and a review of your speech problems, and no abnormality detected, then good

If you have not had these tests, then get them.

If they come back normal, then you do not have ALS........simple

I had an EMG - No tongue.
Don't recall having a facial exam.
And never had any speech or swallow study.

irish28 · 05-24-2012, 02:10 PM

Dear Al and friends,

My Grandfather died of ALS in the 1940's. I am concerned I have the symptoms--difficulty typing with right hand, muscle twitching in left forearm, calves feel cramped, finger twitching in left hand and hard to work fingers in right, perceived weakness, numbness in left thumb. They are all happening now. Any info will be greatly appreciated.

Thank you for being heros.

Sincerely,

irish28

Alyoop · 05-24-2012, 03:04 PM

Then if you are really anxious ( you are of course). Get these tests done. They will help answer your questions. Nothing worse than being scared, whether there is or isn't a reason for it.

There are plenty here, on this part of the forum , who have had a heap of tests for no reason at all

Now I noticed you are in the UK, that's a lot different. The NHS won't do unnecessary tests, to allay anxiety.
Go back and speak to your GP about your concerns and ask for a swallow study. You can always go privately and pay for it.

rachelg · 05-24-2012, 03:11 PM

Poosmum

Here in the UK, if your GP is concerned enough he will speed through a referral. As you have already seen a neuro and EMG I assume they are not too concerned.

If you are concerned about your swallowing etc - get your GP to refer you to a speech and language therapist - if your GP is concerned enough he will do the referral and fast track it

If your GP is not concerned enough for you, see a different GP and see what they think.

If your GP wont give you another appointment then go to a walk in clinic ie Boots.

If you have a neuro appointment scheduled then you will either know the date or if you don't know the date you will know that it will be within 3 months - thats how it works here in the UK.

As I said last time you were posting - the weather is brilliant, get out and about and off the computer.

Listen to the answers that have been given to you time and time again. I dont know that this forum is the right place for you to be.

People have been patient - but you are testing their patience. Your GP and Neurologist are your best place for answers - not here.

Alyoop · 05-24-2012, 04:33 PM

Darn I miss the like button

<<<<<<<<<like>>>>>>>>>>>

HelenL · 05-24-2012, 04:54 PM

irish28, you really should start a new post as no one is going to see your concerns here. But, since I'm here, there's nothing we can do unless you have testing done. Have you been to a pc or neuro, any strength/muscle tests? Do you have a positive Babinski? While it is sypossible to be ALS, it's very unlikely... and numbness and tingling are not symptoms. Get thee to the doctor my friend, and keep us posted!