Status
Not open for further replies.

peteborota

Member
Joined
Apr 2, 2009
Messages
11
Reason
Learn about ALS
Country
UK
State
London
City
London
Hi guys and girls,

I'm waiting to see my neurologist on Thursday, but I'd like to canvas the opinion of the board. I have already spoken about my bi-lateral fasics pain and sensory issues in my legs. It's difficult to look beyond ALS because my calfs are tightening up, my hamstrings are sore. I'm in constant discomfort (tooth ache like pain in and the front of my calfs feel like they are cold. I have had some fasics fire off in my arm and chest. But only on the odd ocassion. I do feel weakness although I can walk on the balls of my feet, walking on tip toes is harder as my calfs are so tight.

What is really freaking me out is this bi-lateral onset of fasics in my calfs, muscle tightness, tooth ache like pain.

When I went for my initial diagnosis the Neurologist said that my reflexes were brisk but not pathological (which frightened the ***** out of me). I had Brain and Spine MRI's and a clean EMG on the 11/1/2011. But since that time the pain, fasics (popping bubbles) are worse and the outer part of both my calf muscles are tight.

Can an emg really miss ALS in both calfs, if not what the hell could it be.

Sorry to pour this out on the board. I just need to discuss this with people as my wife grows tired of my fears.

If you've taken the time to read, thank you.
 
Increased reflexes are normal if symmetric and from what I have read here and in all other sources, ALS does not start in both legs/hands. About the EMG, I dont believe it much, though some here say their EMG was initially clean. Definitely depends if it was done by proper person.
 
Thanks for that. I meant bi-lateral fasics in my calfs not hands. When you say you don't believe an EMG what do you mean?
 
You could get a "false " emg if the operator did not do the nerves that are affected by whatever the process is causing the problem, but......a good neurologist, of course, tests not only the area where the problem is, but often does a few other muscles as well. I am sure he would have done one of your legs, that you have symptoms in.
I am not sure why you cannot look beyond ALS? What about the 100 s of other neurological conditions? You have no symptoms or signs pointing to ALS?

Aly
 
peteborota,

The EMG will find lower motor neuron problems if they are present. And, if you have ALS, LMN problems detectable by the EMG will be present months or even years before clinical weakness or atrophy appear. If you don't have LMN clinical symptoms and you have a clean EMG, you don't have ALS, period.

The reason you can't look beyond ALS is that you were taken in by some of the ALS information out there on the Internet and became frightened by what you read. That fright has now become an obsession. You should have dismissed all thoughts that you had ALS a year ago. You didn't. You would rather continue to have an irrational fear of having ALS than to admit that your Internet research and current obsession is wrong. Not the choice I or most people would make, but it's your life and your self-imposed suffering.

There is no more evidence today that you have ALS than there was 15 months ago (when you first started posting here). If you had had ALS 15 months ago, you would almost certainly be substantially crippled in one or more of your limbs by now.

With ALS, it's not how your body feels, but how your body fails. ALS is a progressive degenerative neuromuscular disease, which means that, over time (and a short time at that), more and more nerves and the muscles that they control will fail -- permanently. It starts in one part of the body -- a hand, a foot, your mouth or tongue -- and spreads through the body from there.

If no muscles are failing, it's not ALS. If the muscle failures aren't spreading -- from the fingers up the arm, from the foot up the leg, or from the tongue to the rest of the mouth and throat -- it's not likely to be ALS. If your problems come and go, it's not ALS.
 
Sounds like you have BFS. You have nothing that remotely resembles ALS.
 
Last edited:
Hi Guys,

Thank you for taking the time to reply. I do feel guilty when I look at so many selfless people who have been diagnosed who come on here to help allay other people's fears when living with the condition.

I apologise for posting it's difficult to understand what's going on with your body especially in the absence of clear clinical diagnosis. We live in a time when we look for black and white. why is it that my condition left me for 8 months then reappeared, stronger and more painful than before? These are rhetorical questions, but the problem is when you look on the net with your initial symptoms there is a distinct lack of quality information.

I am going to cancel my appointment with my neuro, get on with my symptoms ignore them and see what happens.

Thank you for being so kind.

Pete.
 
Pete,

Nobody here is suggesting that you cancel your neuro appointment. Nor are we suggesting that there's not anything wrong with you. What we are suggesting is that you let your fear of ALS go and let the doctors get on with figuring out what's wrong with you. Be patient and stop trying to second-guess your doctors by doing "research" on the Internet.

Your fear of having ALS is unreasonable. Your need to know what is really wrong with you is not.

Good luck.
 
Thanks sound advice.

I'll make the meeting.

Thank you.
 
Status
Not open for further replies.
Back
Top