oscar1

I don't work anymore. I can't walk very well. I stay at home with my family. It is hard because I'm 30 years old and my parentes are on their 60's so I think it is very hard for them to see their young son suffering from something like this. I'm goning to another emg next week. I hope it will be clear but I don't think so.
wish you well

Hello... How are you doing? Yes, it is hard to wait... I hope you can be diagnosed with something other than als.
wish you well

marge...ta for droping us a line....i do know not having a dx can be frustrating...neuros in good old blighty are not so easily inclined to dx as in other countries and a school of thought that says pls does not exist..the certainty is if one does have it it will become obvious eventually. my symptoms mimic pls to a t...thats why i hang around the forum...plus the fact i enjoy it here....there are some laughs amongst the unbelievable pain and suffering....and theres nowt anybody zan do for you so just get on with it i say....good luck johnny

Margaret. Boy did I want a name........I do get your stress. I just wanted a diagnosis no matter what so I knew where it was all pointed. It's a horrible feeling. Now I have no diagnosis except pyramidal dysfunction ? Cause, but at least it's going. My journey started 5 years ago. It took 3 years to learn patience, plus talking to people with ALS. I owed it to them, to get over myself and my fears. The strength here is mind blowing, and I had no right to be stressed knowing I did not have it. No right at all.
Bless you and I do wish you well.

Sorry had to break it into 2 to be able to post this. Read the bottom one first

Aly

You have no reason to fear ALS. Nothing that points to it. You have a bunch of unexplained signs and symptoms, that may eventually decide to form into a known disease, or maybevlike me, they never will. The chances are much higher that you have emerging MS, especially with your family history. Whatever you have, you need to shake off the fear, it rips us up and most certainly, starts giving us the symptoms that we fear, I totally believe that. I have thousands of twitches a day, but now only notice them if I think about it. Because the fear has gone, I seldom bother.
I am not sure that my words will help, but I hope they will give you hope that you can shake your ALs fear away. Life is good on the other side.

The ALS trap was mainly caused by My husbands anxiety rather than my own. It was difficult to ignore as he is a neurologist. I had an obviously spastic gait which was annoying and worrying. My first EMG was abnormal but showing reinervationn no active denervation, which was good. He imagined atrophy everywhere on me, constantly pointing it out. My neurologist never agreed!
When I was diagnosed with pls, I was scared but relieved, Hubby was totally devastated, seeing the glass 3/4 empty.
His ALS terror was never confirmed by neurologists and he took me to 4 in the end. He is a very good diagnostician, so not believing my husband was difficult. In the end I went and discussed my fears with a psychologist who specialized in neurology. He helped me see how hard it was for my husband to see my signs and symptoms clearly, it was his wife, not an unknown patient, therefore all his training. Counted for nothing.

My questions remain the same. Why did you go to PCP and then neuro to begin with. Now you understand this is not pm'ing and everyone can read this. If you want to pm, then go gto either just under your name, click on privy messaging and type in my sign in name. Or go to user cp (found on left side of page) and scroll down until you find new message. Or we can do it this way.
Toto

pat im sorry i forgot say im very greatful for your concern . how are you coping and goodness knows how you find the strengh. You have had the illness for such a long time. I think and prey that i will be ok once i know whats wrong . but a complete emotional roller coaster . I hope your ok cared for and loved god bless margaret

I have blocked evoked potentials in spianl cord, high protein in spinal fluid
lots of blood tests lymee minerals etc
last 2 months the inner muscles on both feet have atrophied yet they were tested in emg 2 months ago
doc says ms but no numbess but twitches and bits of atrophy..... weird
thanks patricia

hi
sorry but you really have to wait for a dirty emg and more symptoms its a waiting game . what test and blood test have you had .
Pat