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Robert....Hope everything goes well with the biopsy. Do you know what muscle they'll be doing yet?
 
Sorry for this running a bit long...

April - I think whether or not you can regain strength through PT/OT is dependent on the cause of the weakness. It would seem reasonable that for a number of ailments you would have to address the underlying cause of the weakness before you could start building strength back up.

Lovelily - The biopsy will be from the left vastus medialis. Not an area where I have any particular weakness, but I do get "purring" in that leg.

I am also posting because I got the chart notes back from the U of U. A lot of it was good (normal reflexes woot woot!), but some of it raised more questions for me. During the exam the neurologist said the EMG was normal, but the notes mentioned "minimal abnormalities." Since I can be a little Type A, I was shooting for none at all :)

I tried reading the thread Al stickied on EMG's, but its been a long day, and it's too much on my tired brain. That and I choose social science because I wanted to read paperback textbooks on fun topics like deviancy (That and if you're ever worried about your pet hypothesis you can always do "qualitative" research). I'm throwing this out there in the hope that sharper minds than mine (Wright? Help, please.) can help me wrap my mind around this. So with that here is the transcription:

Nerve condutction studies were entirely normal on the right lower extremity, including S waves. EMG showed minimal abnormalities including increased spontaneous activity in the right anterior anterior tibialis. However, there was no evidence of a myopathy.


Most of this was sounds great... NCS "normal" (including S waves), no evidence of myopathy. But a few questions:

1. What are S waves? Are these related to the sharp positive waves that are a common finding in an abnormal NCS/EMG that can lead to an ALS diagnosed. Since mine are normal this should be a relief, I just want to make it into a bigger relief.

2. What exactly is "spontaneous activity?" What does it mean, and what other findings would make it pathological? I ask because EMG day was a kind of quiet quiet one on the twitching front, and things have picked a a bit since then.

3. Cool, no evidence of myopathy (who wants an 'athy anyway), but doesn't this rule out some nice treatable otptions that present with stiffness, cramping and spasm like polymyositis, and immune system related inflammatory myopathies. Also since ALS effects motor neurons and not muscle itself, its not a myopathy right?

I'm trying to stay positive as always, but since the soreness, cramping, and feelings of weakness have gotten a little worse, and since I realized that some of the neuro findings point away from a disease of the muscle itself (which I don't necessarily want), I was a little discouraged.

I guess I should look on the bright side. Right now I a lot of what I experience can be described as "decreased exercise tolerance." That sounds like it could be fixed with course entitled, "Embracing Excercise and Diversity in Physical Activity." Yes, that would probably be a paperback textbook too.

Thanks for all the help and support,

Robert
 
Hello Robert~This really is a stressful time...isn't it? I pulled out my EMG to see what 'S' waves could be, and the only thing I could come up with is perhaps the word 'Sensory'. That's the only thing I see typed out side of 'F' waves on my report.

I have ABSOLUTELY no idea what any of it means, outside of the fact that mine were normal.

My EMG that time was not, in my 'vastus lasterus'...

Good luck!
 
Hello Robert

Spontaneous activity: things like fibriliations, positive sharp waves and fasciculations that can be seen during the EMG portion of the test.

Minimal spontaneous activity in a single muscle like the anterior tibialis is not something that should cause you any alarm, especially given all of your other symptoms. Your EMG would show many more abnormalities if your symptoms were due to ALS.

The reason your doc said it was a normal EMG . . . is because if that is all that was found . . . then it was pretty much normal. If you could get me the raw data, I'd be more than happy to look at it for you if you need more peace of mind.

S-waves are not positive sharp waves. This is something that is seen during the NCS part of the test. This is a phenomenon that occurs when you stimulate a peripheral nerve . . . the resultant electrical activity goes to the spinal cord . . . and then fires back toward that same peripheral nerve. Normal S-waves more or less shows that your nerves are communicating well with your central nervous system and vice versa.
 
Hi Wright,

Thank you for the explanation, and reassurance. Overall I was comforted by the findings, I was just curious because I have heard "spontaneous activity" tossed around here before, but had not paid as much attention as it was prior to my EMG.

Thank you too for the offer to look over the data. That was a kind gesture, that I sincerely appreciate. For right now I'm feeling OK with running with the doctors' strategy of muscle biopsy and seeing a rheumatologist. The last several days have just been a little rough, and attempting to just do "everyday things" is rewarded with soreness, pain, and rear end kicking fatigue.

Robert
 
HI Robert,

I wanted to say that you really express yourself well! I am like all over the place and mis-spelling and not checking, basically you would think that I am 10 yrs old.

I know what you mean with the 'exercise intolerance', that is my thing. On friday I washed all my floors (it is alot) and ran errands and carried the baby all over. Well, for the last 24-48 hrs, It is the same. My muscles hurt and are very sore and more twitching! I went shopping with my sisters today and my feet were killing me after 2 hrs. I have great ortho shoe's (Yuk) and they still hurt. My sister who is 150 pounds over wieght does not have this foot pain. * does anyone else get this? I theorize it is from loss of small muscle in feet, the bones in my feet pop out but I can still walk.

You are brave to read your chart, I was going to send fo mine, but was a little nervous about what I might see. That is GREAT news that your reflexes are normal!

My biopsy was in my right lat.
I still have not got my blood work done from rheumy yet, been too busy with kids and all, I will go this week.

I agree about the PT, if we dont know the source of the weakness, then there is no point to me. If I was doing ROM or stetching, that is different.

How is your wife handling this? If you dont mind me asking, not trying to pry.

Please take care and I do love the way you articulate your self!

april
 
April – I cheat by writing everything in MSWord first to spell check. I have a tendency to hit backspace while outside of the “text window” in forums. This causes Internet Explorer to go back a page, and I only had to lose a couple of long posts before I stopped swearing and learned my lesson. I have always loved reading and writing, and am a pretty eclectic reader in that I love everything from technical treatises to page burning thrillers (Side note: I utterly stunk at math until I discovered statistics in college.). Someone will have to start a distraction thread on good reads J

I think that you should request your charts even if you don’t read them. It’s helpful to have the information handy in case you need it. I have found that, even when requested, other medical offices don’t always pass on all the chart notes when asked to send them on to another office (especially as your file gets larger). With the increasing ease of transmitting records electronically, most medical offices I have dealt with have the records transcribed within a couple of weeks of the visit.

I wouldn’t worry being scared about your charts. A good physician should tell you what strategies they’re pursuing and diagnosed possibilities. Reading the charts can be helpful because you can see what stuck out in the doctor’s mind, what possibilities they’ve eliminated, and the direction they are heading. It’s helped teach me to be a lot clearer about what I say, and how I describe my symptoms.

I think it’s true that often physicians assume that what you complain about first to be the symptom troubling you the most. I’ve learned to spend the first 2-3 minutes of each visit by stating what symptoms I am most concerned with, and what I feel is progressing. It’s funny, I get the impression some doctors have gotten so used patients not requesting and reading their records that they can be pretty candid in their notes.

I think I’ve mentioned a little about my wife in another post, but to sum up, she is a practical angel (not practically an angel). She is an angel in that she has been very supportive, and wanted to be involved in dr. visits and the like. She is practical in that she kicks my butt when I need it, like when I insist on having her feel my neck muscles for the umpteenth time, or if I ask to look at her tongue (Yes, I’m embarrassed to say I actually forced my wife to endure the tongue comparison game.). Her response is “Don’t stress it” or, “Why don’t you write that down to ask at your appointment, and forget about it for now.” My sweetheart for sure. Too bad neither of us cook that well (sorry kids ;) ).

Robert
 
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It’s funny, I get the impression some doctors have gotten so used to patients not requesting and reading their records that they can be pretty candid in their notes.

I think you're right, Robert. When my husband had to have a colonoscopy a month ago, we consulted with the doctor first, as I'd requested that it be done in a hospital, not an out-patient clinic. (We had a big problem last fall, when I'd had it done in an out-patient clinic, and they gave me too much fluids, and I went into cardiac arrest and had to be rushed to a hospital ER in an ambulance ... every time I get near a hospital, all hell breaks loose).

ANYWAY ... back to the point. The doctor agreed that it would be best to do Paul's procedure in the hospital, and he apologized to us for the language he would be using in his request to the insurance company. He said, "I don't usually use words like "elderly" or mention that a spouse has ALS, but I want to make a strong case for using the hospital."

I thought it was odd that he said that, since we wouldn't see his request form. But of course, if we ever ask for the file, we would read it. I thought that was a class act on his part. ... to apologize in advance.

One thing that has puzzled me about doctors' reports: On the copy of my initial report from the UCLA clinic, the neuro described me as "A pleasant woman." (She caught me on a good day. :))

But I've been wondering ever since, do doctors ever describe someone as, "Whatta b***h!" ?

BethU
 
Beth,
that is funny that you said that about the 'pleasant woman'. I got my charts back when in the spring I was in out of hopsital for C-DIFF and it said that I was 'pleasant women'. So, I was telling my sister (who works for a ortho surgueon) and I said, 'wow, I was in all that pain and er doc still thought I was pleasant?' My sister then informed me that ALL do that at the hospital. THen if you come back or give them any problems while there, they will say 'aggrevaited woman'. I was really disappointed! I thought I was VERY pleasant considering that I couldnt eat or drink and going to restroom 30x a day with a 5 week at home!

Sorry to burst your bubble, but I got mine popped also....
 
RObert,

I know what you mean about your wife. MY husband is a saint! I have looked at his tongue, looked at the muscle in his hand, made him point his toes....you get it. ALthough, he has reached is limit and I have stopped. BUT, one thing he will do is if something is hard to press or heavy, he will say "april, just so you know, this a hard button to press or that pan is heavy. So if you think that it is you and your weakness, it is not!" I thought that was kinda nice! (although, he could be doing it sarcasticly?) He gives me massages, and does the bedtime thing with the kids so I can go to bed early. We are blessed to have one anther, and he does not let me stay down for long! He is the one who helped me snap out of my 'funk' 2 weeks ago.


Take care
 
Hmm... BethU and April, maybe I'm too much of a ornery cuss. My chart from the U of U just calls me a, "31 year old left-handed male." I'll have to look back on my older ones to see if they call me anything different. I'm kind of bummed not to be "pleasant." ;)

I scheduled my "consultation" for the biopsy for October 1. I know the surgeon pretty well (we were at the same end o' summer barbeque together), so I'll have to give him grief about needed to "consult" before he agrees to cut on me.

Robert
 
Alright, I know this has been slow going, but the past couple of weeks have been a little hectic at work and home. Here is the first stab at a symptom list for my matrix. At first I tried to put them into general groupings, mainly because I think better that way, but have decided to leave them mainly uncategorized for the time being. There are also a couple of placeholders because I am not sure of the technical name.

Ongoing Fatigue
Muscle soreness and stiffness
Cramping (primarily arms and legs)
Swelling (primarily legs)
Twitching (arms, legs, face, and trunk)
Fasciculation
Myoclonus (primarily left forearm)
Muscle “Purring” (primarily left leg and arm)
Poor circulation? – limbs fall asleep easily, mottled skin, tingling at base of spine

Vibration sensation
Flushed feeling (feels like a fever but no temperature)

Feelings of Weakness
- Facial (mainly eyelids to forehead)
- Hands
- Shoulders
- Calves
- Knees

Changes body/muscle
- Narrowing/flattening of nostrils
- Eyebrow droop
- “Soft” muscle

Trouble swallowing
“Stiff” tongue
Shortness of breath

The next step for me will be to put together a chronology, and any present diagnosed and diagnostic tests. Then I will start filling in options.

Robert
 
Hi Robert...The 'mottled' skin caught my attention. Have you ever had your prothrombin time checked for a blood clotting disorder? Thick blood? It is called the 'Antiphospholipid Syndrome'. Check it out.

Sometimes it's hard to catch in the blood.
 
Man, if we goggled all of these together, I wonder how many different Dx we could come up with? Good inventory of your symptoms!

The eyebrow droop caught my "eye".

Best of luck to you and please let me know as you find more results on your quest for answers!

~Cindy
 
check,check,check......but I dont have cramps. when you say cramps, do you mean like charlie hoarse cramp type thing? I have asked before, I get a crampy-achey feeling in my hands and forearms with feet. it feel like arthritis or pain/aching. but I have not had a 'cramp', like the charlie hoarse kind. I had those when I was pregnant with the boys---ouch. I am sure I sound dumb, but I just wonder if what I get would be considered cramping? what are yours like.

april
 
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