Scared and weak.

[Guest]

Hi everyone.

I've had emg's in the past and have come back successful. I have another one on Aug 24 2010. I don't know what is happening to my body as I thought I was making head way and gaining more energy. I've had muscle weakness for awhile but not to the point that I couldn't lift anything. For the last couple of weeks I feel weaker and I dread mornings as it seems my stomach inside is twitching or spasms. My fingers are sore and numb in the mornings(sore through out day) and my legs and arms are sore and heavy. I notice divots or grooves in my arms and legs and I wair knee supports as they are sore and makes them feel better. My speech is fine as is swallowing. My face feels like a tight feeling and my eyes feel heavy. If I do too much I get this burning feeling in my lungs. To top it off I try to get my body moving by riding a stationary bike and my testicles go numb( sorry if that is graphic) but it is happening more. I seen so many specalists and they all have a theory but have no concrete answers on what is going on with me. If I put my fingers up high up and grip someting my hands and arms shake. I can lift things and even try lifting light weights but later I experence headaches. for 6 years I have had head pressure on top and side of my head which isn't comfortable.
I can't break this vicious cycle. Of course I do worry about ALS but haven't been told I have that. Typing this email my fingers feel stiff. I beyond the point of been diagnosed as an aniexty disorder as I don't buy that.

In the past I have had very good feedback from this site as some people know of my case. I guess I will see what next week will bring me. If my emg comes back clean then I don't know where I go from there.

Thank You to everyone who shown interest in my situation.

 

[Guest]

As the professionals like Wright say, 1 clean EMG is no ALS, so it can't be dirty.
I too have a lot of things going on, even atrophy - when I hold two of the same books in each hand between thumb and index where atrophy is I can feel a lot of pain in the 'bad hand', I can sey this is the result of muscle loss and weakness - but here they keep on saying no ALS over here. My EMG was clean.

 

[Guest]

Alexandre

Are you trying to start trouble? This is Trevor's thread, not your thread.

I NEVER said that one clean EMG means someone cannot have ALS . . . so I'll waste my time and mention to you AGAIN . . . upper motor neuron onset ALS and how if someone has lower motor neuron dysfunction, an EMG will detect it. Go ask your ALS-specialist if you don't believe me. Your ability to misinterpret the written word, take everything out of context and misquote things is mind-boggling. If you don't like the medical opinion of your neuro's, go get a 3rd or 4th or 5th opinion (or whatever opinion you're on).

You have already been told by the moderators that you will be banned from this site if you continue your misinformation and nonsense, but I guess you don't care.

Trevor

I remember your story well and I recall our PM's. I still stand by my opinion that your story is not the story of someone with ALS. Hang in there until your neuro visit at the end of this month. It sure sounds like something autoimmune (possibly post-viral in nature) to me or something viral.

 

[Guest]

Are you serious? I was just trying to help here and to ease his mind! Man, I cant do anything right for you.
It was my opinion that you should have UMN signs + LMN signs in order to get ALS diagnosed, and that if you have fasciculations that are related to ALS, it should show up on an EMG with other signs. IF only fascics show up it is no ALS. That was what I've been told but maybe I misinterpret it.

 

[Guest]

Alexandre, if your intentions were to convey that his story doesn't sound like ALS, then it was I that misinterpreted what you said . . . and for that . . . I apologize. Listen, I think you could be of great value here on this forum if you can just accept the diagnosis of your ALS specialist and realize that like Trevor, your story is not the story of someone with ALS. You can share the fears that you once had and let everyone know that in the end, you did not get an ALS diagnosis. I have absolutely nothing against you . . . it is your words. I truly wish you peace.

Trevor, I apologize for temporarily hijacking this thread. I wish you peace as well.

 

[Guest]

hi trevor.
reading through your post my first instinctive thought was something viral or autoimmune.
alot of your symptoms point to this and away from als.
unfortunatly sometimes especially with viral infections they can be hard to pinpoint and leave long lasting effects.
the weakness you feel would also be down to this.........chronic fatigue.

take care. caroline

 

[Guest]

To Trevor, I'm definitely not a specialist and am not well educated in ALS ( you can read that ;-) ), but I honestly think you have nothing to fear. You had a lot of EMG's and your symptoms don't sound like ALS (as far as I know).
What you say about the putting my fingers up high up and grip someting my hands and arms shake, I recognize that.
When I stretch my arms my hands start shaking, I thought it was clonus but neuro says tremor. I have bad tremor, especially when I'm nerveous. I also have the numb fingers, every night when I wake up, mentioned it a lot of times to the neuro. I would say to you, try to let go of the ALS thing before it gets to you. I'm in that position and take it from me, it's horrible.
Make sure you test for Lyme and so. Like Caroline says, chronic fatigue or fibro is possible. Some people get also very weak, sick from glandular fever. I don't know much of it but that are the things I can think of.

to Wright: I was indeed trying to say to Trevor he should listen to you., no apologies needed. But I did always think that one EMG was enough to clear you from ALS, that's why I don't understand that some had clean ones at firs, my mistake. I'm not medical trained.
"I think you could be of great value here on this forum ", no I don't think that, I'm way to deep in this to actually be of any help to someone.
The first 3 days after my clean EMG I was trilled I did not have ALS, and then I started thinking, looking at my hand, seeing that it is not normal. When I hold two of the same books in each hand between thumb and index where atrophy is I can feel a lot of pain in the 'bad hand', this sounds like some weakness to me. I don't know what to do anymore as I believe my neuro is wrong because I know have the impression the dent gets bigger. Also my family three is very odd and maybe a FALS is there. But I don't know if this presents in another way. The best thing for me to do is to leave the board, because no one here is able to convince me and I know that, because I convinced myself. My problem is that I have this list with questions that I don't see to get answers on, a list that I really want to see answered by a ALS specialist. I always see the assistent and never the professor so he hasn't seen my hand. I emailed him but he does not respond.
Anyway, like you said this is not my thread, so sorry for talking about me again.

Trevor, don't worry, I think you don't have ALS, but like Wright and Caroline say probabely something viral.
Today I had a talk with my boss, he survived a heart attack, he has been very patient with my situation but he also said, at one point you have to get out of it, don't let it take over your life. If something is meant to be to happen it will and you can't stop it, it can happen to everyone at everytime any kind of disease. Life today not yesterday and not tomorow. I know he's absolutely right, but it's very hard.
I'm sorry to say this and don't what to upset people here but ALS is for me the most dreadful diagnose you can ever get. It's not just humane. A part of this and other things that happened in my life, like losing my family, I lost faith in God and life.
I have great respect for the way some people here cope with their illness. I just couldn't , I know my fear lies in the fact to lose my independence. I don't have any family left that could take care of me, so I'm on my own. I've a very closed peronality and don't like to be touched, so the thought of someone that is not family have to wash and dress me is unbearable to me.
Sorry I'm talking about me again, bottom line I want to tell you: don't let this get you, don't let this destroy you like it did me.

 

[Guest]

Alexandre, holding a book in one hand and having pain is not ALS.When will you learn?

AL.

 

[Guest]

I think Alexandre needs some professional help in the way of mental health counseling and medication. Alexandre-- I do not know the circumstances of the loss of your family, but I do know that personal tragedies can often lead people to extreme anxiety and even somatoform disorder, where deeply embedded psychological trauma can lead one to develop very really physical problems that manifest as the symptoms of actual physical disease.

Please, please, please go to see a psychiatrist and a therapist and get some help for this. It appears to be ruining your life.

here is a description of the problem from Wikepedia: Somatoform disorder, also known as Briquet's syndrome (named after Paul Briquet), or Brissaud–Marie syndrome (named after Édouard Brissaud and Pierre Marie), is a mental disorder characterized by physical symptoms that mimic physical disease or injury for which there is no identifiable physical cause[1]. The symptoms that result from a somatoform disorder are due to mental factors. In people who have somatoform disorder, medical test results are either normal or don't explain the person's symptoms. People who have this disorder may undergo several medical evaluations and tests to be sure that they do not have an illness related to a physical cause or central lesion. Patients with this disorder often become very worried about their health because the doctors are unable to find a cause for their health problems. Their symptoms are similar to the symptoms of other illnesses and may last for several years.
A diagnosis of a somatoform disorder implies that mental factors are a large contributor to the symptoms' onset, severity and duration. Somatoform disorders are not the result of conscious malingering or factitious disorders.

You can go online or to any bookstore and get books about hypochondria and somatoform disorder and you can get some help. I hope I do not offend you or anyone else here, but I think if you have had repeated EMGs and been given the all-clear by a neurologist several times then you should look at this possibility.

Sandra

 

[Guest]

Thank you for everyone's comments. I appreciate this site and value all the information I receive. I know I have muscle waste as my Naturapath could see. but she checked my reflexes and they were fine: knee, bottom of foot. Muscle wasting could be a result that I use to be very active and now I'm not; not using my muscles. I will let you know after my emg the results and this will be my last one if everything is normal. I do not enjoy doctors as everyone can come up with what they assume you have and give you medications. My wife read Suzanne sommers book and she had some interesting natural remedies that might help some people.

Again Thanks