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rangerbob

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Aug 16, 2010
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Learn about ALS
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01/2011
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i have been checking out this forum for sometime now and was wondering if you could help me -- has anyone experience something similiar...here is my spouse's (31 y/o female) story.

1. started having trouble lifting objects in March 2009 after giving birth to our second child
2. starting in late 2009, she started suffering from extreme, extreme fatigue
3. about 6 months ago she started to feel weakness in both arms -- couldnt lift right arm any higher than her shoulder blade...the other armcould but took a lot of work to do so.
4. in may, went to PCP and told him about it and he ran some tests:
-AST was high at 134
-ALT was high at 221
-CReactive Protein was high at 5.7
-Low Vitamin D
he put her on vitamin D supplement...within a few weeks we found out she was pregnant.
5. went to see my OBGYN and she ran a few more tests
-tested a Positive ANA Profile @ 1:160 speckled and homogenuous
-high C3C and C4C
6. docs recommended i visit a rheumy doc to follow up on ANA profile. rheumy then did the following:
-AST, ALT were almost identical
-Creatine Kinase 208
-Aldolase slightly high at 16.8
she ruled out Lupus and most other rheumy conditions...thought maybe it was polymyocitis and wanted me to see a nueromuscular doctor.
7. we went to see neuromuscular doc at a top national hospital and he initially believed it was polymyocitis but needed more tests. the fatigue, weakness, stiffness in muscles were consistent polymyocitis, etc .
8. in the meantime, not only did her arms get weaker (no longer able to drive to turn steering wheel) but she also has seen significant weakness in her legs. she fell down at work a couple of times and thus filed for short term disability.
9. the neuro doc wanted to run muscle biopsy, EMG. we took the EMG last week and here are the findings:

"Need EMG exam of selected upper and lower extremity muscles showed evidence of abundant fibrillations and positive sharp waves. Few polyphasic motor units were seen in all muscles, along with decreased recruitment. Motor units were of increased amplitude and duration. Some of the motor units in the RUE were up to 4-5 mV in amplitude. This study revealed electrophysiologic evidence of an axonal motor neurogenic process with both activeand chronic denervation with reinnervation. There is no evidence of myopathy."

10. Doc has us coming back for spinal tap exam and some addl blood work. she feels like she is getting worse and worse as weeks progress all while being almost 4 months preg.

*********************

I was wondering if you could help me here....did any of you all experience like symptoms? are they at all consistent with ALS/MND?

can someone tell me in plain english what the EMG is saying?

my wife and I are trying our best to educate ourselves on this so we can ask intelligent questions of our doctor and his staff.

thanks so much in advance and any help would be greatly appreciated!

-RB
 
Hi, there are people on here with a lot of experience with EMGs who should be able to provide you with some feedback (I'm new here myself and only know the basics). In addition, should you need it, you will also find a lot of support here to help you and your family through this stressful and difficult time. Sometimes that can be the most helpful thing while waiting for more info from your doctors.
 
Hi, there are people on here with a lot of experience with EMGs who should be able to provide you with some feedback (I'm new here myself and only know the basics). In addition, should you need it, you will also find a lot of support here to help you and your family through this stressful and difficult time. Sometimes that can be the most helpful thing while waiting for more info from your doctors.

thanks for your reply. it has been an eye opening experience for us...
 
Also have her checked for Lyme's disease.

the lyme disease test is one we tested for today...should hopefully get results soon...i appreciate your response to my query...
 
Hi RB,
I'm sorry to read about all the symptoms and declining health of your wife. I am wondering if you have read through the thread at the top of the page about EMG's and ALS? Al, our moderator has left it as a permanent source of info. It is very comprehensive and I think may answer many of your questions about interpreting your wife's EMG. It is the seventh heading from the top. Also, since you can't send private messages yet due to not having posted enough, perhaps you could ask Al or Joel, our moderators, to send your initial posting to Wright. He is our expert on EMG's and he is a professor with wonderful comprehensive knowledge of EMG's and lends his expertise on this forum.
Saying prayers for you and your wife.
Laurel
 
RB, did you discuss the EMG results that you posted here with your neurologist specifically or a primary care doctor? When my sister had her EMG, her primary care doctor gave her the initial feedback, but was very adamant that she must follow up with a neurologist, as any truly qualified analysis or intrepretation of the EMG results should come from a neurologist, period. If you did talk to a neurologist and are still confused by the language/results of the EMG, keep pressing for answers and clarification. Sometimes doctors forget that people without medical backgrounds may not always understand certain medical terminology, etc.
 
Hi RB,
I'm sorry to read about all the symptoms and declining health of your wife. I am wondering if you have read through the thread at the top of the page about EMG's and ALS? Al, our moderator has left it as a permanent source of info. It is very comprehensive and I think may answer many of your questions about interpreting your wife's EMG. It is the seventh heading from the top. Also, since you can't send private messages yet due to not having posted enough, perhaps you could ask Al or Joel, our moderators, to send your initial posting to Wright. He is our expert on EMG's and he is a professor with wonderful comprehensive knowledge of EMG's and lends his expertise on this forum.
Saying prayers for you and your wife.
Laurel

thanks much laurel...i have spent this evening looking at the sticky posts on top of the forum. i have noticed that Wright seems to have a good grasp of what might be going on from a more technical front. maybe he might chime in should he get a chance. thanks much for your prayers!
 
RB, did you discuss the EMG results that you posted here with your neurologist specifically or a primary care doctor? When my sister had her EMG, her primary care doctor gave her the initial feedback, but was very adamant that she must follow up with a neurologist, as any truly qualified analysis or intrepretation of the EMG results should come from a neurologist, period. If you did talk to a neurologist and are still confused by the language/results of the EMG, keep pressing for answers and clarification. Sometimes doctors forget that people without medical backgrounds may not always understand certain medical terminology, etc.

understood. we met with our neuro doc last monday (he was pretty certain that it was myopathy)...he ordered the EMG for thursday and then we found out on friday that it was not myopathy but neurogenic instead. his nurse called us late friday to tell us that he wanted to do the spinal tap and another round of blood tests early this week. so at this point, we kind of sit on our hands waiting :(
 
Hello Bob

Laurel and Al asked me to look at your thread, so here I am. I'm sorry about what your wife and family are going through at the moment and we will all be here hoping for a good outcome.

I'll start by interpreting the EMG for you:

Fibrillations (or fibs) and positive sharp waves (or psw's) indicate denervation of muscle. Nerves innervate (i.e. connect to and control) muscles. When these nerves are damaged, they lose that connection and thus denervate the muscle. When this happens, fibs and psw's are formed and are detected by the EMG.

Motor units are made-up of a collection of muscle cells and the axon that innervates them. Individual axons are what make-up nerves (think of a nerve as a rope and the individual fibers of that rope as the axons). The EMG has the ability to measure the electrical activity of the motor unit and sometimes that electrical activity becomes unstable because of past or present damage to the motor unit. This can be seen as polyphasic motor units in the EMG.

Decreased recruitment means that for whatever reason, not all of the muscle cells of a muscle can be excited (i.e. recruited). There is a normal recruitment value and when it is reduced, it means something is damaging the nerve innervating the muscle cells or the muscle cells themselves are damaged.

A motor unit action potential (or MUAP) is electrical activity generated by the motor unit I referred to previously. MUAP's that have an increased duration and/or amplitude would indicate reinnervation. Reinnervation of a muscle occurs as a result of that muscle first being denervated. If your wife had a myopathy, the MUAP's would be reduced.

Axonal motor neurogenic process means that motor nerves (motor nerves are the nerves that innervate skeletal muscles) are being damaged . . . and that damage is ongoing because fibrillations and positive sharp waves were detected. This can happen for a number of different reasons and that is the next step that will be taken: determining what is causing it.
 
Hello again Bob

I didn't want to make the last post too long, so I am posting again to ask you a few questions.

I know you more or less gave us a timeline but could you be a bit more specific when it comes to her symptoms?

Did she notice any weakness at all prior to giving birth? Was she aware of her body enough to notice?

Has the weakness been symmetrical in her arms as it has progressed and did it start in both arms at the same time?

Do you know exactly what muscles were needled during the EMG? Did they also needle her legs and back and tongue during the EMG?

Did they test her reflexes and if so, what were the results?

Does the fatigue and arm weakness get any better at any time?

Sorry about all of the questions, but I'm trying to get a better picture.

The elevated ALT and AST could mean a liver problem but could also mean muscle damage or inflammation.

The elevated C-reactive protein could mean some type of inflammation (many times it is linked to the heart but that isn't always the case).

Given that they were testing her for autoimmune conditions, I would guess that her sed rate and ANA wasn't normal. Do you know if that is true?

When the body is stressed (e.g. from a pregnancy and birth) it can react in very strange ways. Sometimes the immune system can become over zealous in response to that stress and wreak havoc in the body (e.g. the nervous system). There are a few neurological conditions that are linked to autoimmune conditions as a result of stress from things such as child birth (e.g. Parsonage-Turner syndrome). It seems a bit coincidental that all of this appears to have started at a precise point in time (i.e. child birth) and then more or less quickly progressed from that point. I am thinking out loud and completely speculating but the "autoimmune scenario" is plausible. I will be completely honest with and say that I'm sure the neuro has MND as a differential diagnosis . . . BUT . . . I'm sure your neuro has a bunch of differentials on the table.

I wish you all the best and please lean on us if you feel the need.
 
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Wright I sincerely, sincerely appreciate your time with this. I will put the answers under the questions you posed:

I know you more or less gave us a timeline but could you be a bit more specific when it comes to her symptoms?
>>her fatigue started during thanksgiving of 2009. we all got sick at the home - some kind of GI virus or something. fever, fatigue, and vomiting were persistent for a few days. however, the fatigue never went away and got progressively worse. in march of 2010 she started having problems lifting her right arm. she could lift it no higher than her shoulder. when she tried to move it higher than her shoulder it would hurt real bad. the following month (April 2010), the other arm began doing the same thing as well. today, she cant lift either arm up.

we conceived in may of 2010.

this month she started noticing increased weakness in her legs. could no longer walk up steps and was getting easily winded when walking intermediate distances. a couple of times she was bending down at work and fell down because her legs could no longer hold her up. at that point (last week), we decided that it was best to take a leave of absence. in fact, she has basically stopped driving because she can turn the steering wheel in the car. it hurts her shoulders too much.

in the past few days, she has gotten a bit more worried because she feels as though she is sensing stiffness in her legs and fingers.


Did she notice any weakness at all prior to giving birth? Was she aware of her body enough to notice?

>>she says that she did notice some weakness after giving birth to our second child in March of 2009. but it wasnt enough for her to be alarmed but did recall making a mental note of it.

Has the weakness been symmetrical in her arms as it has progressed and did it start in both arms at the same time?

>>good question. it started on the right arm for a month or so and then progressed to the left arm. then to both legs at the same time. however, the weakness in the legs isnt nearly as pronounced as it is in her arms.

Do you know exactly what muscles were needled during the EMG? Did they also needle her legs and back and tongue during the EMG?

>>they needled her in two different spots in her upper right arm, then her right hand and then her upper right leg (hamstring area). there was no back or tongue needled during the EMG.

Did they test her reflexes and if so, what were the results?
>>we dont recall this very well. i believe the doc did check this during his initial exam but nothing stood out in our minds.

Does the fatigue and arm weakness get any better at any time?
>>pretty much no. i ask here to describe her energy level on a scale of 0-100%. she usually gives me numbers 10-20%. she describes her body as though "Sunk" -- no energy. the arm weakness might get slightly better but nothing material. generally speaking is doesnt get better at all.

Sorry about all of the questions, but I'm trying to get a better picture.
>>no problem sir! i appreciate your help!

Given that they were testing her for autoimmune conditions, I would guess that her sed rate and ANA wasn't normal. Do you know if that is true?
>>her ANA profile tested positive back in may. thats what caught our attention. her SED rate was fine and within the standard range. however, a month later the ANA profile showed negative. kinda weird.

When the body is stressed (e.g. from a pregnancy and birth) it can react in very strange ways. Sometimes the immune system can become over zealous in response to that stress and wreak havoc in the body (e.g. the nervous system). There are a few neurological conditions that are linked to autoimmune conditions as a result of stress from things such as child birth (e.g. Parsonage-Turner syndrome). It seems a bit coincidental that all of this appears to have started at a precise point in time (i.e. child birth) and then more or less quickly progressed from that point. I am thinking out loud and completely speculating but the "autoimmune scenario" is plausible. I will be completely honest with and say that I'm sure the neuro has MND as a differential diagnosis . . . BUT . . . I'm sure your neuro has a bunch of differentials on the table.
>>it feels like the symptoms started after baby #2..got progessively worse before we conceived #3 and then accelerated after we conceived.

I wish you all the best and please lean on us if you feel the need.

>>thanks so much...i sincerely appreciate your help... i eagerly await your response. thank you sir.

ONE LAST THING: fwiw, she had her spinal tap today and the spinal tap doc said it appears to be clean but needed more time for tests i believe.
 
I will be completely honest with and say that I'm sure the neuro has MND as a differential diagnosis . . . BUT . . . I'm sure your neuro has a bunch of differentials on the table.

not sure if this might mean anything with respect to a differential diagnosis but here is what we saw on the spinal tap paperwork that our neurologist supplied the MD that did here spinal tap:

...The differential would include SMA and other motor neuropathic processes. [written by our neurologist]

can u please explain to me what is meant by "differential"...?
 
Hello again Bob

That story sure doesn't sound like ALS to me. A few reasons:

1) How quickly she progressed from her right arm to her left arm and how quickly the symptoms themselves progressed in each of those limbs. Typically ALS starts with a particular area and then marches up . . . and then goes to another limb. Of course I say "typically" . . . there are rare exceptions . . . but the odds are definitely in your favor.

2) The symmetry to which the symptoms seem to appear. It's rare with ALS that it presents symmetrically. ALS stands for amyotrophic lateral sclerosis . . . the "lateral" meaning "to one side." Once again, the odds are in her favor.

3) The "fatigue factor" and how it presented itself doesn't sound very ALS-like to me. Certainly those with ALS become fatigued but not in the manner your wife describes (at least not in the initial stages).

4) Your wife has her age on her side. ALS is extremely rare in people that young.

I can't sit here and tell you with 100% certainty that she doesn't have ALS or any other MND but as I said, it sure doesn't sound like it to me.

Furthermore, it seems as if it started after some type of viral infection. To me, that could point in the direction of something post-viral autoimmune . . . meaning . . . when the body is exposed to a virus, the immune system's job is to destroy it, but sometimes the immune system doesn't know when to stop and starts to attack the body (i.e. autoimmune). Her fatigue and the way that her story presents, sure does point in that direction.

You said that she had a positive ANA test and then later it was negative. That isn't weird if she is beginning to recover. I know you said that she now has symptoms in her legs, but the damage could have been done by the immune system and now it's done doing the damage. If that's the case, her body might have the opportunity to recover, now that the immune system is done attacking her. An analogy would be a hurricane that devestates a town: it does its damage and then it's gone and now the town simply has to rebuild.

The other thing that can be happening is that the initial virus she got during Thanksgiving could still be wreaking havoc in her body. Have you consulted an infectious disease specialist? It would probably be worth it, given the onset of her symptoms and how they coincide with an infection.

I am not at all diagnosing her with a thing . . . I am simply once again thinking out loud and giving you an opinion based on her story.

One other thing that you have to keep in mind is that her condition might not have a name, per se. Many times patients want their physicians to tell them exactly what is wrong with them and what the name of the condition is. Unfortunately that can't always be done. She might in the end be diagnosed with "some post-viral autoimmune condition" or some "virus" . . . both of which are nameless.

You ask what a "differential" is: It is medical jargon for the different, possible conditions a patient might have.

Take care and be hopeful that you will get answers sooner than later.
 
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wright: sorry for not responding sooner. my wife and i took a day road trip to get out of the house and try not to think about it.

your conclusions sound very logical and definitely are very welcome from my end.

should i ask my neuro for a referral to a infection specialist or should i got to my PCP?

we got a few more results today to include no metals in the urine test. she had a pretty high RBC in her CSF but i believe it was because the doc didnt do that great of a job with the puncture. he needed to bring someone else in with him to get it done...there was some bleeding involved.

i am not sure this is a fair question (potentially forcing a binary answer to something more subjective in nature) but i will ask it anyway: is there one test that we should watch for that would most definitely "rule out" ALS?

i sincerely appreciate your help...you are a godsend to us! cheers my friend.
 
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