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rott

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Let me just start with saying my heart goes out to all that has been affected by this terrible disease. The reason that I am here is that I have been going through some disturbing changes over the last few months and I would like to get everyone’s opinion on my symptoms. I have written down my symptoms as they started showing up and the steps I have taken to find out why these things are happening. Also i have expressed my concerns about ALS to my Neurologist and even before the EMG test were done and after the initial exam was done he told me that i shouldn't be concerned about ALS, but i can't seem to shake the feeling that i might.

July- Came down with pneumonia. Weight went from 175 to 160. Regained weight up to 170.
- Eye sight problem started while recovering from pneumonia.

September/October- Started my perceived problem with my speech.
- Felt fatigued and both knees started to feel weak.
- Shortness of breath.

October
- Lightheaded when turning too fast or standing up too quickly.
- Appetite changed. Feel hungry but nauseous when I eat. Losing weight. 170 to 162
- Ringing in ears, been there for a long time but now sensitive to high pitch sounds.
- All over body twitches.

November- Developing sleep disorder. Waking up after 4 to 5 hours of sleep.
- Joints are starting to ache. (Wrists, elbow, ankles).
- Muscle twitching has slowed considerably. But I have what feels like a vibration to the inside of my right heel now.
- My appetite changes throughout the day. More hungry and less nauseous in the afternoon and evening. Weight now at 165.
- Still have my perceived problem with my speech. Feels like it has gotten worse over the last few weeks. Still no one is noticing. “TH” & “S” appear to be the problem. Tongue feels weird. Like I don’t know what position it should be in when it’s resting.
- Weakness in knees still has not subsided; has not gotten worse. Calf and hamstrings muscles feel sore; soreness stays for a couple days and then nothing for a few weeks. Numbing pain in both heals; comes and goes.
- Still have shortness of breath. Same as initial symptom.
- Balance still a problem. More frequent than before.
- Face twitches when I smile too long.
- Sharp stabbing pain in left knee. (started back before all other symptoms, comes and goes)


PCP - ordered a brain MRI and chest x-ray. Both came back NORMAL.
Neurologist - Had blood work done. Came back NORMAL.
-Had EMG done of right arm and leg, came back NORMAL, neurological exam done-NORMAL.

ENT-Hearing test done. Hearing is fine (no loss of hearing but have Tinnitus).
-Had a balance test done for possible inner ear problem. Balance test came back normal; lightheadedness has nothing to do with an inner ear problem.
-Had a videostrobe by an ENT - NORMAL.
Opthalmologist -Saw an eye movement specialist. Told I have a convergence insufficiency problem.

I would really like to hear what everyone thinks. Thank You.
 
Your symptoms are not synonymous with ALS. Your EMG was clear. You didn't mention a NVC being performed by the neuro...

I'm surprised your PCP did not send you to a Rheumatologist, with all those aching joints.
 
brooksea-
Thanks for the response. Actually i have an appointment today with a Rheumatologist. Could you tell me what a NVC is?
 
An NVC is the same things as an EMG and it test the weakness in your muscles.
 
Kiss your neuro, clean emg=no als.
 
You came to the right place for info, some of the people here should have PHD's & a shrink degree too. They even listen and try to help. Not like a Dr, they really do listen. My dad had Bulbar Palsy. Have you gotten tested for Lyme's Disease. There are 2 test you should get. One for recent exposure, and most important The one for Past exposure. Most Dr's just do the recent exposure one. My cousin has it really bad and most of your symptoms are basically the same. They only did the one test on her and it said negative, the past exposure came back positive.
It had eaten at all her joints, breathing problems, kept losing and gaining weight. The aches and pains are so bad. She had & has severe headaches, balance problems and always tired. Her museles were also twitching from the joint damage.
When I was 14 we had a Pernament campsite at Battlefield Campground 3 miles outside Gettysburg, I broke out on spots every where. Even my tongue, I had gotten Rocky Mountain Spotted Fever from a tick bite, never did find the tick or bite mark. I was a freak show for the Dr's to show their interns, kinda of rare. Anyway Living in PA ( God's Country) I know there are tons. Good Luck to you,keep us posted.
 
I am very happy the emg came back normal. My other concern is Bulbar ALS. I have read conflicting answers from other sites and from my neurologists' assistant(i guess)....if i were to have bulbar als signs of it would show up in the emg of my limbs. Is that correct? Maybe i miss understood them.
 
tammyg-

I will look into that. I know I had a test done for Lyme's(normal), i guess it was for the recent one you are referring to. Thanks.
 
As people have said, your symptoms sound absolutely nothing like ALS at all, not even close. Celebrate.
All this stuff coming after the pneumonia, could be post viral, so will improve.
Be careful not to lump all these symptoms together, to make one illness. It could well be a bunch of symptoms completely unrelated to each other. Most of us get a sleep disorder when we suffer from health anxiety.

I wish you well
Aly
 
An EMG and NCV are two completely separate tests:

electromyography (EMG), a special recording technique that detects electrical activity in muscles. Certain EMG findings can support the diagnosis of ALS. Another common test measures nerve conduction velocity (NCV). Specific abnormalities in the NCV results may suggest, for example, that the patient has a form of peripheral neuropathy

SEE:

http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm#182714842
 
rott;198133 said:
Also i have expressed my concerns about ALS to my Neurologist and even before the EMG test were done and after the initial exam was done he told me that i shouldn't be concerned about ALS, but i can't seem to shake the feeling that i might.

Here's your first problem. If you were willing to believe your neuro if he told you that you do have ALS, why aren't you willing to believe him when he tells you that you don't? Sounds like some very screwed up logic to me, thinking that your personal online research is more accurate than the considered opinion of a highly-trained professional.

Continuing to believe that you have a particular disease when a qualified physician has specifically said you don't have it == a sick form of self-indulgence. Work on that and stop worrying about having ALS.

-Had EMG done of right arm and leg, came back NORMAL, neurological exam done-NORMAL.

People with ALS don't have normal neurological exams. Period. Why are you holding on to this morbid fantasy of possibly having ALS? Do you want to have it?

B]I would really like to hear what everyone thinks. Thank You.

I think you are a pretty lousy diagnostician when it comes to medical problems, especially when they pertain to your conditions. I think you should stop doing it and leave the medical stuff to the people that are trained to do it.

Good luck to you.
 
tammyg-

I will look into that. I know I had a test done for Lyme's(normal), i guess it was for the recent one you are referring to. Thanks.
About a year ago I started losing my voice. I did not go the Dr's for months. I figured if I had Bulbar like my dad, I did not want to know and just live to the fullest. But then I heard the Ray Rice Ravens had a throat infection and maybe thats what I got.
So I went to my ENT, he also seen my dad when I was grasping at straws, he knew my concerns. Anyway, from a bad cold I had 3 months before , I had inflamation in my voice box that was being aggravated by acid reflux that I did not even know I had. I was so happy I cried.

Don't worry I will hold off on the Steeler Comments for now. LOL

Good Luck:)
 
I agree. Clean emg kiss your neurologist. I had had 2 emgs the second one worse than first. Mine started as bulbar palsy I did not realized how bad my speech was until people close to me brought it to my attention they first said I sounded drunk when I got tired. It progress quickly from there now I can only grunt. I use a iPad to talk for me I am still in denial not ALS. I have very little pain. Just weakness that steadily gets worse . Believe if I could go back and that 1st emg be be clear I would be singing glory Thank you God I pray you find your answer but for now put ALS out your mine that is the last thing you want
Take care
Felica
 
I am trying to move past this. I have days where it doesn't bother me that much and other days it's all i can think about. Sitting down at a desk all day doesn't help keep my mind off of my symptoms.

I wanted to give my neurologist a big hug when he told me the results; there has never been a time where i was more scared than i was waiting for him to come into the room.

Does anyone know the answer to my question i posted above about my EMG of leg and arm testing and bulbar ALS? I definitely would like some clarification on that.

Thanks for all of your responses. It's greatly appreciated.
 
I'm agreeing with your neuro and with everyone on here: Your story is not the story of someone with ALS and you know it. You just can't accept it for some odd reason.

As for your question: Could a limb EMG be clean at the very beginning of bulbar-onset ALS? Yep, but it doesn't matter in your case, because you don't have any signs or symptoms of having ALS. It's like you trying to convince me that a horse is actually a dog because they both have tails. Stop fixating on the tail (your perceived symptoms that have nothing to do with ALS) and look at the obvious differences between the horse and the dog (your whole story versus the story of someone who truly has ALS).

Be done with this.
 
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