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You Aussies are all sweeties:)
Aly
 
Can anyone recommend a neurologist and neurophysiologists in the San Francisco Bay area, any Californians on here or otherwise?
 
If you don't mind me asking, is this from personal experience? Are they both experts at EMG/NCS and determining what could be causing muscle weakness?
 
Hi ShanHB-
I have another different neuro appt next month and I am trying to type out everything for the record. I will borrow your line: there is nothing wrong with me psychologically, so look elsewhere drs. I as you have been always so healthy, active, nothing ever wrong, never went to dr, besides the yearly check-up. I feel disgusted to got back to the 2 other neuros, for the way they made me feel. I feel sick to pay them to treat me like that. But I feel desperate to hold on to them just in case, but really I shouldn't put my eggs in one basket, until I find someone that wants to believe me and even is okay with repeating tests (and not being so worried about the insurance company) to make sure something wasn't missed or looked at incorrectly. I just want one of them to say: I believe that something is going on with your health, we will continue to explore any leads to find out what could be causing your weakness, whether in the area of neurology or other area. I want them to be interested in searching, feeling some responsibility relieving the patients suffering.
 
It sounds like they did a pretty thorough exam. But I do have one suggestion. Pick up copies of all reports. Years ago my "Normal" MRI when I got the report myself showed a ruptured L5 disc

My "It's all in your head" heart problems turned out to be atrial fibrillation--finny how they believe you when you collapse on their treadmill with a heart rate of nearly 300

My sudden severe shortness of breath was 'anxiety' until I threw such a fit they ordered a chest CT--and found the pulmonary embolism that had me in the hospital for 30 days on daily shots in my stomach to try to dissolve multiple clots-they were in my legs, lungs and brain.

There's a saying in the medical field. If it's not in the x-rays or lab reports, it's not there---but that's not necessarily true.

Based on normal EMG's, I'd say no you probably don't have ALS---but that certainly doesn't rule out other conditions such as MG or MS or bad discs or.....well, you get my drift--there is a long list.

It's very unlikely that two separate EMGs by two separate doctors were both done incorrectly--but again--get the reports yourself. I NEVER take anyone's word on any of my results any longer.

Young women are almost universally considered to be anxious or depressed or both.

One possibility that would show all normal results: Fibromyalgia. It took Mayo Clinic to diagnose my Fibro. Fibro does cause weakness, pain fatigue muscle spasms and cramps. It has a whole host of problems associated with it. THe diagnostic criteria are widespread pain above and below the waist that last longer than 3 months (I believe, it's been a while since I've researched it) and a certain number of positive tender points--not to be confused with trigger points--which indicate MPS (Myofascial pain syndrome)

In Fibro all lab tests are normal--though some have an elevated sed-rate level (an indication of inflammation) I actually wrote a book on fibromyalgia years ago. I'm not a physician--but I have researched and have 20 years of personal experience on the syndrome. It is VERY real and is only now getting serious results from doctors. Some still don't believe in it, though.

In all honesty, your symptoms sound very much like fibromyalgia. It has no cure, but is treatable. Unfortunately, many many with fibromyalgia go on to develop auto-immune disorders at some point.

Basically, if you don't know what it is: It's a condition that causes pain due, they believe, that is linked to Substance P--a neurotransmitter of pain. It also affects sleep--we don't rest well and we don't reach stage 4 sleep. Anit-depressants are often prescribed and Lyrica has recently been approved by the FDA to treat the pain.

Mine progressed to the point that I'm on Morphine to control the pain levels. Good luck! One last thing--fibro does NOT cause muscle wasting or atrophy.
 
meli, notme has a good point because as I was reading through this whole thread I kept thinking that you should be checked for firbromyalgia. I was diagnosed with it back in 1996 and even though alot of the stuff I was going through did not fit into that diagnosis. It was the first one that I believed I had because at that time I believed that all docs knew everything. So I did all kinds of research for years on it and was a part of a online support group that I am still currently a manager of but alas, the diagnosis has been changed by the several of new docs I have seen over the years. My progression is more of a umn desease because my clinical weakness is actually muscle failures that happen. Very much like has been explained here already.

I used to get mad at everyone in the house because someone was 'intentionally screwing all the open jars of maynaise, pickles ect on too tight". I also began thinking the toothpaste industry had changed the way they made their flip caps and they were harder to open. I had to use something to pry them open. I also had to buy new nail clippers because all the ones I were getting were too dull to cut and I thought it was because they were using cheaper metals. Do you get where I am going with this? Its not a feeling of weakness, it just is weakness that all the sudden you notice because of muscle failure.

With fibromyalgia you can feel weak. You can feel stiff. Pain in the neck and shoulders radiating down the arms is a normal everyday occurance for most people with fibromyalgia. Most any GP doc can diagnose it by pushing on 11 different pressure points and if I remember correctly I think you need 6 positive spots to qualify. Its treatable only through lifestyle changes and some meds to help with symptoms. Just ask your doc if he can check you to see if you come out positive.

No need to worry about the ALS. Chances are what your dealing with may be something chronic but managable. Or maybe its something very treatable.
 
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ok..not sure why my post is being moderated but I agree with notme.
 
If you don't mind me asking, how did your symptoms begin and progress?
 
If you're talking to me, my fibro started with various symptoms: fatigue, what seemed to be joint pain (but was in fact pain in the nerves that lead to the muscles) and various other things. The main thing with fibro is that there (at this time per the medical community) no muscle WASTE or true damage. It is not considered to be a progressive disease.

For me - after 20 some years of all this BS, I've worsened to actual muscle weakness and atrophy. I can no longer open bottles or hold things or carry things, etc. My left arm is almost dead and the right is following. I fall all the time and my muscles are literally wasting away. I have no actual diagnosis for what is happening to me now.

Your symptoms do sound a lot like Fibromyalgia, though--which is very manageable--though painful. Most labs will come back normal--as will MRIs and CTs and X-Rays. Fatigue and 'feeling' weak and pain are the hallmarks--along with numbness, tingling, etc. To meet the criteria, as I said, it takes 11 of 18 check points to be positive for pain. They test for this near where muscle attaches to tendons at joints--at the hips, neck, elbow, knees and several other spots. When the doctor presses on these points, it will produce pain.

But you should also be aware that often people with fibro do develop other things later as I did. Many of us with the condition seem to develop auto-immune disorders somewhere down the line. It's a diagnosis of exclusion, basically. Many of my friends with it were later diagnosed with lupus, connective tissue disorders, and other auto-immune conditions.

There are some excellent online resources for fibromyalgia. If you're not experiencing any 'true' muscle wasting, etc...then it's safe to look in that direction
 
Not sure why my posts are being moderated. Did I break some rule I don't know about? I haven't listed any websites or anything. for the original poster--search for the medical association diagnostic criteria for fibro (made in 1990) it's diagnosed most often by a Rheumy, not a neurologist

in essence:

11- of 18 tender points
widespread pain above and below the waist on both sides of the body
fatigue
 
For both you and joyce-

Joyce, how did your symptoms begin and progress?
What is considered muscle atrophy, how would I know I have it, see it?
 
meli, I have muscle atrophy. It's so obvious a child can see it. There is a thick branch of muscle between your thumb and forefinger. That area on me is totally flat--all the muscle is gone.

When there is atrophy--the muscle dies and the area becomes smaller. Make sense?
 
hi notme-
I'm still having a hard time understanding what atrophy looks like?

Between your thumb and forefinger, do you mean that puffy area, is that the muscle?
My knees feel and look bonier than before, and I have to sleep with padding between knees when sleeping on sides because it's uncomfortable(creates red pressure spots) and the interior of my knees has a concaveness to it(like it's suctioning in more). Is that muscle loss? It hurts to be on my knees, like they will collapse under me, and feel less cushioning...
 
HI Meli

No, that's not atrophy. Knees are joints. ALS does not affect the joints at all--but fibro DOES cause widespread joint pain--in multiple joints. Mine were painful in knees, elbow. shoulders and ankles.

Atrophy is painfully obvious. If you have atrophy--trust me, you wouldn't have to ask what it looked like. type atrophy pictures in a search engine--you'll be able to see it. Again--it's very obvious--and ALS is NOT a joint issue--it's a muscle issue.

In the majority of people with ALS, the first thing they notice is an inability to do something--not difficult to do--but absolutely can not do.

Please don't be concerned with ALS-- with no clinical weakness and normal EMGs, it's just not ALS (although I am certainly not a doctor)

Do some research on Fibro. It has a lot of associated symptoms that sound very familiar to you. I've had it, I'm sure, since I was a teenager--though was not diagnosed until I was almost 40
 
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