Concerned.

poosmum · 02-01-2012, 11:41 AM

36 years old, mother of one going through tests to get to the bottom of what i have got going on.

For a very long time i have had what i can only describe as 'internal vibrations'. They are with me all day, every day, and mainly are in my legs and arms. My legs are as weak as anything and what got me to the neurologist in the first place, my left leg giving out on me when was standing still. I have a tingling in my left foot if i run my hand over the top of it toward my little and 4th toe. I have severe tremoring in my right arm. I am constantly exhausted, i struggle getting words out and can sound like i am slurring. I have a really sensitive ulnar nerve, my memory is shot to bits, i have started to sway when standing still which was horrible and sometimes the floor felt like it was vibrating, but i guess that was just me. My arms aren't quite as strong as they use to be either... I have the sensation that my finger tips are numb and i have creepy crawlies under my skin too. My nose gets numb sometimes and i have a post nasal drip and i'm speaking very nasally too. I've had an MRI that came back clear.

Needless to say i am terrified and have almost accepted that i am going to get a positive diagnoses.

poosmum · 02-01-2012, 11:43 AM

I also get twitching. Twitchy back, twitchy leg, twitchy tongue, twitchy leg, twitchy thigh.... every where.

Alyoop · 02-01-2012, 11:59 AM

Sensory symptoms are not usually a sign of ALS. The important question is, did your clinical examination show weakness. You have not mentioned what your clinical examination showed. The clinical examination is often the key as to what may be going on.
Did it show weakness?
Did it show spasticity?
Did it show signs of sensory issues?
It would be very unusual to have a neurological issue, in the absence of some sign that all is not well, during the clinical examination

poosmum · 02-01-2012, 12:35 PM

The tremoring was so bad in my legs it causes weakness.
No spasticity, although i did experience foot drop for the first time this week.

Sitting in a chair, with my legs crossed, the buzzing and vibrations are absolutely terrible, and i had really bad twitches again too.

Alyoop · 02-01-2012, 01:34 PM

Poosmum, I am not talking about subjective weakness. A " feeling" of weakness not backed up by weakness detected on a clinical examination is commonly caused by muscle fatigue or lack of muscle stamina. Been there done that!
What did your DR say was wrong on examination? This is a VERY important question as many people on here, say they feel weak, but have no clinical weakness at all. Some do not feel weakness but it's detected clinically.

There is a very big difference between what you feel and what the doctor finds. The fact that you do not mention weakness on examination, leads me to think that your examination was normal? What does your neurologist say about what he thinks is going on? It's a very long stretch to go from a vibrating feeling in your legs ( not a synptom of MND) to being on this website. Be careful not to fall into the trap of g o o g l I t I s and self diagnosis, both are very bad for your mental health, again, been there, done that along with hundreds of others.

trfogey · 02-01-2012, 01:41 PM

I'm afraid you've misunderstood the question Alyoop asked you, so I'll rephrase it for you. What has the neurologist said is wrong with you? Not what you say is wrong with you -- what the neuro says he/she has found wrong with you? Did the neuro find weakness in any of your limbs? Did the neuro mention anything about your reflexes being abnormal? Did the neurologist confirm that you are slurring your speech?

Overall body twitching is not a symptom of early MND. In fact, it points away from from MND, especially when they come on in a short period of time. Sensory symptoms aren't a symptom of MND either. And it appears that you've redefined " weakness" to include things such as loss of stamina and simple fatigue. And you don't "experience" foot drop -- you either have it or you don't and, with MND, it doesn't go away once it starts.

Obviously, it sounds like something's wrong with you, but it doesn't sound anything at all like MND. I hope that the neuro has some answers for you soon.

Alyoop · 02-01-2012, 02:19 PM

Tr, I got home from school and added a whole lot, then you posted

whoops! Seems we said exactly the same thing.

marypat · 02-01-2012, 03:51 PM

i know sensory issues are not usually part of als but it is mine. the tremors were an early symptom. i hoped for a long time it meant that my diagnosed was wrong. i was told "ALS is a multisystem neurodegenerative disorder that may occasionally include sensory neuropathy among its non-motor features. " and that there is no reason for why it happens to some but it seems to only happen in sporadic. as u say each has a different journey.

trfogey · 02-01-2012, 04:03 PM

Quote:

Originally Posted by Alyoop

Tr, I got home from school and added a whole lot, then you posted

whoops! Seems we said exactly the same thing.

Your iPad may be faster, but my headmouse spells better, Alyoop.

Alyoop · 02-01-2012, 04:45 PM

Poo to you tr. It's a combination of the fast predictive text and my laziness. More often I am just darn lazy.

Marypat, tremors and a vibrating feeling is not really the same thing. You are correct that very occasionally sensory issues can be present in ALS. It's not common and as ALS is not common, it's extremely rare. We don't talk about it much here as it sends the worried people into a total tail spin.

What we are trying to actually establish is.........does this person have any clinical signs? I am not commenting on what they may or may not have as there is not enough information available for anyone to even attempt to help.

Please excuse my poor gramar and sepelling !

marypat · 02-01-2012, 05:52 PM

alyoop, you are right, i should of thought of that. of course i shouldn't add to their distress., mp

poosmum · 02-02-2012, 09:59 AM

I have lost use of my ring and my little finger. I have been trying to do finger exercises and my fingers just do not do what i want them to do. Fingers all over the place. I've seen on this site that the ulnar nerve is frequently effected by this disease.

poosmum · 02-02-2012, 11:10 AM

I've been trying to do simple 'finger' exercises and it appears that my ring finger and pinky have a mind of their own. I cannot for love nor money get them to do anything i want. For example... simply putting my hands and finger tips together but so the palms aren't touching is impossible, they will not meet up and also again putting hands together and crossing each finger over separately ie little fingers, then ring fingers... and so on and my ring fingers want to move when trying to do the little fingers....and finally crossing the thumb and 1st finger over is okay, but doing the others, i can't.

I am worried that before i get my EMG, my entire hand will be effected.

Alyoop · 02-02-2012, 11:38 AM

Poosmum, I don't want to sound harsh, but starting another post when you have avoided the questions asked in your first one does not seem fair. It's leading people on a bit. Some people on this site struggle with using a computer, using dragonspeak or head mouse. They do so to try and help anxious people, look at the big picture! Go back to your other post and answer the simple questions posted if you want help, not avoid them by starting another one. It gets way too confusing

poosmum · 02-02-2012, 11:44 AM

In answer to the questions, i was not told anything from my neurologists appointment. I have simply received an EMG appointment in the mail. The rest i am left to wonder about.