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lydia

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Hello,

I have been lurking for awhile, observing my symptoms and basically biding my time until visiting GP and what I knew was the inevitable referral to the neuro. Went to neuro, who after only probably 15 minutes, referred me for a boat load of blood tests, MRI, EMG, NCV and Brain SPECT. Neuro, like GP, made comments about the possibility of Parkinson's during office visit. For some irrational reason I am intimidated by doctors and can't hold an intelligent conversation with them; in fact these visits were my first to any in 15 years (but that is another story). Getting myself in the door was a big deal, actually holding a conversation was just too much...Anyway, I didn't ask anything, and when both brought up PD I basically replied "oh, ok" and felt relatively relieved that I had apparently dodged the ALS bullet (even though I know, what does one visit actually accomplish...and what doctor is going to bring ALS up in the first visit anyways...even though they both DID bring up another nasty diagnosis...and can you believe I didn't know Parkinson's was a BAD thing ...what planet do I live on?)

A few weeks after visiting the neuro I requested a copy of her report to my GP and read the following: "Differential diagnoses would include the possibility of early onset parkinsonism, motor neuron disease, versus muscular disorder" so maybe I haven't dodged that bullet after all. So I have a few questions and would welcome any and all responses:

1) why does she use the word "versus"...? Is she using it like the word NOT? Is she using it like the word OR? I understand that differential diagnosis means a work in progress, with constant revisions and polishing as more clues come in to narrow down possibilities or open up new ones...but why not just use the word OR? To me, when I read her sentence, I interpret it as her leaning towards ALS and PD and not towards some other muscular disorder. What do you think? And I know, I should be a big girl and just call and ASK her myself but I don't...I just speculate all day long. About minutia.

2) I had an EMG of left foot and hand, and it seemed he went up the leg and arm a little in doing so. It was completely normal. (Big sigh of relief) But he took maybe 15 minutes doing the exam. Seemed short to me. I have heard on this forum that EMGs can change with time, but given that I have had widespread twitching since January 2007, AND widespread and sustained cramping, soreness, and stiffness since January 2008 AND neuro confirmed weakness on left-side....if my EMG STILL looked good after all of that, would you agree that it is unlikely the EMG will change for the worse in the future? I do have some neuro confirmed atrophy on left ankle region and left forearm & hand.

3) Anyone familiar with the use of SPECT for useful information in diagnosing or ruling out ALS? It looks like it might be useful for differentiating ALS w/dementia from ALS without dementia, but I can't make sense of anything else otherwise. I know for PD it can provide insight into dopamine levels...

Other than the symptoms described above, the neuro found: brisk DTRs, slight pronator drift (sp?), completely absent plantar reflex (neither foot even wiggled), left hand incoordination (when you flip your hands up and down repeatedly). MRI without contrast of brain normal. NCV normal. I am assuming blood tests were normal...they don't call if they are normal and I haven't heard anything. I have issues with tripping while walking, especially going up stairs. Problems typing, using knife & fork, dropping things.

I have been devouring all relevant forums on the internet and I have to say this is the most active and welcoming of all that I have visited. I look forward to any input...

Lydia
 

Al

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Hi Lydia. If you've been lurking you'll know that wright usually answers posts such as yours. Welcome and be patient. By the way, we recommend never going to a Neuro appointment alone. Too much information for one to absorb.

AL.
 

lydia

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thank you Al

Thank you Al for your welcome. And I know about not going alone to neuro...but I didn't even tell anyone I was going to either doctor's. Too private, just can't do it! At least not yet. And for what it's worth, I was in neuro office for all of 15 minutes before she had me at appt. desk scheduling EMG, NCV, MRI, etc. Anyway, wanted to add I also slur when tired. It's pretty noticeable to my students, especially during the 3-hour night classes. Have to stress there is no rum in my diet coke. I also get painful and repeated cramps in throat while lecturing. Very nasty!

Lydia
 

lovelily

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Hello lydia....sorry I can't help with an answer to your troubles, but I wanted to say 'WELCOME'!

I can totally relate to your 'fear' of neurologists or other doctors, for that matter. Neurologists always left me dumbfounded with their higher intelligence. :-? Too much information to absorb.

I have no diagnoses, but I have 2 abnormal muscles biopsies. I wish you the best and very little stress, as you search for your answers!
 

olly

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hi lydia

welcome,but sorry you are ill and find yourself here.
"versus" would mean "or",i wish these neuro's would speak on our wavelength .
my neuro is like that,he goes round in circles and i ofton leave feeling more confused than when i went in and forget half my questions i have wrote down.
i think its to prove there superiority over us simple patients.
next time you go take someone with you and write a list of questions,a note pad is good to take.
hang in there,take good care.
caroline:-D
ps my planter response is usually posative but sometimes like you my feet are completely dead with no response
 
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wright

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Hello Lydia

I have quite a few questions for you, so please bear with me. It will give me a better idea of what is happening with you.

I guess I'll start by asking why they think it's Parkinson's disease. Do you have a resting tremor? Are you having trouble initiating movements?

How much atrophy do you have? Did it come about quickly or was it slow in its development? Do you know which muscles have atrophy and if it happened at the same time? Did you know about it or did your neuro have to point it out to you? Could you give us an idea of the progression?

When the EMG was done, which muscles were needled? Did they needle the muscles that have atrophy? I'm a little surprised they needled your foot, given the wear and tear feet go through. Most neuro's feel it is a waste of time; many completely normal people have "dirty" EMG's of their feet and it has nothing to do with any type of pathological condition. Do you have the results of the EMG? If so, could you post them on here?

Did you notice you had weakness or was it pointed out to you by your neuro? Do you have any type of sensory symptoms (pins and needles, pain, odd sensations, etc.)? Do you notice in any way that you have weakness or is it only because you can't do the things you used to be able to do?

How brisk are your reflexes? Some people simply have brisk reflexes . . . are you really thin? Have you ever had your plantar reflexes tested? Did your neuro do both feet and did she do it repeatedly? Where was the Nerve Conduction Study done (i.e. which limbs)?

Do they plan on doing another MRI with contrast? That is surprising that they didn't do that already.

You should try to get a hold of your blood work. Did they test your vit B12 levels? Did they test you for Lyme disease? Did they test for any autoantibodies?

Your pronator drift is not really a sign of ALS but can be a sign of other neurological disorders. SPECT cannot be used to diagnose ALS but can be used to look for other things . . . such as you pointed out . . . low dopamine levels that would point toward Parkinson's disease.

As far as your question about a dirty EMG in the future: no one can answer that question. It does bode well that you had a clean one with some of the symptoms you have (muscle atrophy and twitching, which are both lower motor symptoms).

I think I have bombarded you enough in this post. I hope you are remaining calm and not thinking the worse. Take care.
 

brendapals

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hey wright,

I'm just poking my head in here to have you pick your brain some more!

I don't know how to find where I posted my EMG results on here, but my question for you ( realizing neither one of us are doctors of course ), is whether to have another one done?

My first one was 5/07, the neuro said mild carpal tunnel/tarsal tunnel, he is also the same neuro that in 4/08 told me to go back on Klonopin for stress and go to the ER if my speech got any worse! Then 6/3/08 I was diagnosed with ALS by another neuro.

What to do?
thanks so much,
brenda
 

lydia

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some clarification

Hello All,

Thank you again for your welcoming comments.

To answer some of Wright's inquiries, first I think I misspoke, when I said EMG of foot I guess I meant ankle region, not really the *foot*. Under the EMG summary, there are 13 muscles listed. I really don't remember having 13 separate pokes at all; maybe they do some at the same time? Anyway, they all say Normal for Insertional Activity, 0 for Fib/PSW, 0 for Fascics (even though I have them 24-7, but of course not during exam), 0 for Other Spon., Mod for Activation, Normal MUP, 0 for Polys. The only part that has a variety of different results is under "recruit" and they range from mildly to moderately to markedly decreased. I can list the muscles for those if that helps.

My post is going to get long, so bear with me.

As for the atrophy in the left forearm, I thought it looked disfigured or misshapen, it seemed bent to me. I was only looking because I started to have a lot of fatigue in my bicep from doing ordinary things like holding a cell phone, driving, etc . (for the past year). Then my typing started to go downhill. So I started looking at my arm/hand/fingers...wondering what was up with it, and one day I happened to glance at a certain angle by accident and noticed that the forearm looked out of proportion to the rest of the arm (skinny vs. fat). Compared with right forearm it is noticeably smaller, shaped different, curves are very different. I am not sure when I first noticed it, I explained it away as a left-hand thing when I am right handed. Showed it to Neuro on visit when complaining about issues with left arm who seemed to agree that it was thinner..but can't remember her exact words.

The problem with the left foot is a half-dollar size concavity just above and behind the inside ankle bone. Not on the right foot, and I didn't notice it before neuro visit.

The weakness was gradual, some days worse than others. It was/is an observation on my end that I have trouble doing things I used to be able to do. An example: my laptop is too heavy in its bag for me to lift up and put shoulder strap on shoulder. If I am successful getting it there, there is no guarantee I can lift it off when needed. Have to have someone get it off or perform this weird contortion to shake it off. I can't lift bags of soil when I could before. A bottle of beer is actually heavy (but not too heavy!). Going up stairs when tired feels like I pull myself by the railing. Going down is wobbly, unsteady. At the end of the day reading a journal requires too much arm strength to hold journal up. Blah Blah Blah. These of course are the things I notice. First I thought I was getting old (44) but then noticed everyone around me didn't seem as broken as I did.

Neuro did silly tests like grip her fingers, push up when she pushed down, that sort of thing which the left arm and leg did poorly on. But not too poorly, she said it was a 'subtle' weakness. Too me it feels profound.

I do not have a tremor, but my fingers do move/wiggle on their own, on a pretty regular basis (say, any given 10 minute interval one of them will start to dance). My GP asked me to write left-handed and I had a little trouble getting a comfortable grip on pen; he insists he saw what he described as an "intention tremor". I disagree. The writing itself was pretty illegible, as well as the shapes I had to draw. That combined with what happens if I try to walk too fast or for too long (burning muscle pain, heavy left leg, bottom of foot that kind of scuffs the pavement, and slower and slower walking pace), and what happens if I don't move for awhile (very stiff and awkward walking; people comment) is what I believe led him to think PD. Those were the things I was talking about when he suddenly made his comment about PD and seeing a neuro. I still can't believe he said it aloud (and that I didn't react).

I do not have any sensory issues.

Neuro seemed curious about the slurring, which seems to be mostly when I am tired, or when speaking for a while. I didn't bring that up with GP, didn't seem important, but I believe neuro asked something that led me to describe it.

My DTRs were described as brisk, symmetrical and given the score of 3. I am not really thin. (Ok...I am not thin at all)

As for plantar, neuro did both feet, I think just twice. I don't know if they were ever tested before but I remembered a game with brother when younger, we used to tickle the bottom of each other's feet and whoever wiggled their foot lost...I don't remember the outcomes of those games but can't imagine that I kept playing if I was losing....so maybe they were never that responsive to begin with?

The NCV was done on peroneal, tibial, median, ulnar, ulnar to FDI, sural, sup. peroneal nerves; all normal.

I have a list of the bloodwork done somewhere, but not the results yet. Neuro literally checked every single option on the bloodwork order page. If I remember correctly, 15 small vials of blood were taken. B12 test was one of them, MG antibodies (?) was another, something Ig something or other, Lyme Disease, something for Lupus....The blood tests were 3 weeks ago, I go see neuro again in 2 weeks and assume will hear those results. I asked for a copy of my records so far from neuro and they didn't include the bloodwork. Do they not give you records that haven't been gone over with you by a doctor yet?

That is all I can remember right now. Had the SPECT by the way, interesting. Results within the week.

I am not particularly stressed or anxious yet; kind of detached really. Like watching this from afar happening to someone else. I will actually try to have a conversation with neuro this time, she certainly seemed approachable.

Thank you everyone for reading my lengthy post.

Lydia
 

wright

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She EMG'd 13 muscles in a matter of 15 to 20 minutes? Uh, was she late for her tee time? That is almost impossible. Did you notice whether or not she was moving the needle to the left and the right and forward and backwards while it was inserted? If she didn't move the needle around, she isn't getting the full picture. Was this someone who has a lot of experience doing EMG's?

If the EMG was thorough (I'm not sure it was) and you have no PSW's, no fibs, no fasics, no increased MUP's (or decreased MUP's), then it is a normal EMG and she didn't find any pathology. The decreased recruitment in the absence of any other pathological findings may or may not mean something.

With ALS, the EMG will have PSW's, fibs, fasics and increased MUP's in multiple limbs and/or bulbar regions. You will also have increased reflexes and your reflexes were only at a 3. A value of 2 is considered the text book normal value . . . BUT . . . some neuro's consider 3 a normal value too, especially if they are all at a 3 (some people just have slightly increased reflexes . . . and I believe you said all of your reflexes were 3). Once they hit 4 with clonus, then that is usually a sign of a pathological condition.

If your fasics stopped during your exam, that is a good sign. Typically with ALS, once those start, they don't stop.

Have you actually measured your arm to see if there is a difference? You say it's mishapen: could it be due to something other than muscle loss? Do you have any type of bone issues? Again, were the atrophied muscles EMG'd?

Does your leg or arm feel weak when you aren't using them? Is the only way you know they're weak, is when you use them? When you say the weakness was gradual: can you give us a timeline? When did you first notice it? Once you did notice it, did you take note as to how it was progressing? Are you still getting weaker or has it stopped progressing? Where is the stiffness that you are feeling? Is it in the joints or in the muscles?

You say your fingers "move on their own" . . . do you mean they twitch or they tremor?

Does the burning pain you feel in your leg go away once you rest it? Is the burning pain in the entire leg or just in specific muscles? When you say it feels heavy, do you have any type of "weak in the knees" type feeling?

How long did the NCS take?

I think you should ask for another EMG, but this time in all 4 limbs and in your bulbar muscles because of your slurring. Your blood work might lend some insight as to what is happening. If you're not satisfied with your care, don't hesitate for a second to get a second opinion and do your best to get a neuro at an academic institution.

I didn't see "peripheral neuropathy" as part of their differential diagnosis, but it should definitely be on the list. Again, your reflexes aren't really increased much and you have an absence of your plantar reflex, so it's a possibility with your weakness.

I hope you get answers soon. Please let us know what your neuro . . . neuro's . . . say. If you have more questions in the meantime, you know where to find us.
 

lydia

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even more clarification

Hello Wright and everyone else who endures these lengthy posts,

Thank you for your interest and I apologize upfront for my difficulty in describing what is going on with my own body. I have noticed I am completely opposite of many people here who seem so aware of physical changes and sensations and are able to articulate what it is they feel. I am so NOT detail oriented and am at a loss as to how to describe what I feel. My GP was very patient with me when I basically looked at him, shrugged, and said I just feel broken...

As for the EMG, it was a different neuro than the one who ordered it, and it was over much quicker than the NCV which was done right before. The EMG started at 8am sharp and I was in my car by 8:25am. No kidding. This 2nd neuro is listed on website as having a research interest in ALS; but that is all I know (other than his seeming lack of eye contact with patient). I really only looked at the results today when typing my earlier response and was very surprised to see 13 muscles listed. Like I said before, I just can't believe he did 13 pokes. I do remember him moving the needle around (sometimes? every time?). As for the twitches, they were still happening, just not where he was touching/looking. When I say they happen 24-7 I mean it. To amuse/torment myself I sometimes recite where they are as they happen...you know like "back right thigh..front left middle calf...inside left arm near elbow..." and I can usually name the first few before I fall behind, they are that constant, and that frequent. He EMGd around the ankle where the concavity is and up the calf, and on the lower half of the forearm to somewhere around the hand. I don't remember how long the NCV was, it felt longer than the EMG. It certainly was more bothersome.

As for the misshapen appearance of forearm, a better description might be that the bottom portion of my forearm is very very thin, about midway up it sharply widens to the fatter part of the forearm and then as you get closer to elbow there is another sharp thinning. 2 noticeable curves. Compared to the right arm: On the right forearm the bottom portion is thin but gradually widens as you move toward elbow. There are no real curves in it per se. I didn't measure it, but honestly, the difference between it and the right arm is pretty obvious.

I guess I don't know what it means to feel that a muscle is weak without using it. I know that frequently I feel it requires too much physical effort to do something ordinary so I might not bother to do it. It was about a year and a half ago that I noticed my arm felt tired (it had that jelly feeling you get when you overdo it, sometimes a deep ache) and weak (ordinary objects felt heavier, required more effort to lift). Both have gotten worse, it feels tired sooner with less activity and frequently requires what I think to be herculean effort to lift certain things (the vacuum, a suitcase-forget it!, the laptop-use a flash now)

The leg issues became noticeable about 9-12 months ago. First it was the difficulty getting up the stairs. Really hard to lift myself up, if that makes sense. There were a few bizarre instances with laptop bag when I couldn't lift myself over one lousy threshold to actually get in the house. It was like the laptop just put me over my limit. Around this time I started getting sore *during* my lectures. You would think I had done some serious manual labor. It would take about 48 hours or so for the soreness to go away. The soreness was mostly in my legs, mostly thigh muscles, especially the back ones. I thought maybe I just couldn't handle the 6-9pm timeslot, so I switched to the 4-7 period the following semester. No better. Then the soreness began showing up during the 90minute morning classes. Then the cramping started, probably about 6 months ago. I cramp in my throat and ribcage while teaching. Sometimes thigh muscle. Then about 3-4 months ago the soreness began starting a few hours after getting up even if I wasn't teaching or doing much of anything. The cramping expanded to both feet and hands. When I bother to count them, I have over 20 a day. Sometimes over 20 an hour; those are BAD days if they are in back or ribcage, not so bad if confined to feet or hands.

The stiffness is definitely in the legs, but not sure how to differentiate between muscles or joints...I think muscles. It is connected to the soreness, that feeling you get when you overdo it, you are sore...so then you are stiff. Maybe tight is the word? But only for the first few steps, say 10 steps or so, and then not stiff. The way I walk during those 10 steps or so is noticeable to others; children described me as troll (but with affection), friends, students, strangers all ask if I am alright. If I sit down for more than a few minutes and then get up again, process repeats. Hope that helps.

The burning I get in my leg is only in my left calf and goes away almost immediately if I stop walking fast. I tried to walk for exercise, so I was trying to get a good pace going. The burn was incredible. I thought "walk through it, it will go away". It starts like it feels when you don't stretch before running. But it doesn't go away and becomes so painful that I actually have to stop walking for relief, and what instant relief it is. Now if I walk for too long, at a much slower pace (no burn at slow pace), eventually the left leg stops working in tandem with the right...that is the only way I can describe it. It seems harder to move, I feel like I am limping; but no pain (other than the above described soreness). Hope this makes sense.

As for the fingers moving, I don't know how to tell a tremor from a twitch. The thumb, pointer, middle and pinky have all been observed (pretty regularly) to jump on their own. Sometimes it is a single jump (twitch?), sometimes it is several jumps in a row (tremor?). Sometimes I feel as if I can anticipate them, some kind of cue...I can look down and pause and one or the other will start to move. Does that make sense?

Just in the past two weeks I have been having this feeling as if my (right!) leg wants to buckle in the forward direction when walking or just standing. Several times my leg suddenly bends at the knee and I feel my self lower a couple of inches before I correct it. THIS is a pretty disconcerting experience and I wonder if that is what Wright means when he asks about a "weak in the knees feeling"? I am wondering if this is what happens before one starts to actually FALL? Hope not!

As for the neuros....they ARE with an academic institution, so we will see what happens at next visit! The first neuro seemed like she didn't want to talk to me anymore until I had all those tests done. With the SPECT done today, all current requests for tests are done, so lets see what she makes of it all. I am betting on another MRI.

Thanks to all of you who have made it to this last line. I greatly appreciate having a place to come with questions, and even to practice describing what is going on. Believe me, the description above is a far cry from my first visit to GP in June ("I feel broken?"). Suggestions on what to focus on description-wise when meeting with neuro again would be really helpful. I don't know what is relevant and what isn't.

Oh, forgot, 1st neuro found 'slight cogwheel rigidity' in right arm.

Again, thank you for reading-

Lydia
 

olly

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hi lydia

write down your main symptoms and concerns to take with you.
take a notepad and pen.
ask them what they think is going on and for an explanation of test results.
this may sound stupid but with some if you don't ask they are not very forthcoming with info.
please take someone with you.
take good care.
caroline:-D
 

wright

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You certainly have a lot of different things going on and it doesn't seem to fit any one thing. I'm intrigued.

Caroline gave you wonderful advice about what to do when you go to your next appointment. Remember, this is your health at risk here, so do everything you can to keep the lines of communication open with your docs.

Take care and please keep us informed.


P.S. the cogwheel rigidity is something that is typically associated with Parkinson's but certainly doesn't mean you have it.

P.S.S. With your NCV, is there any decrease in any of your CMAP's?
 

lydia

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Thank you Caroline and Wright,

I probably won't take anyone with me to next visit, but I think I will record the visit; provided neuro has no objection. I have started a list of questions, mostly very curious about the rationale behind the SPECT exam. I know the neuro had to argue for it as the insurance company initially denied it. No one here has had one? I feel almost special. I learned I will be radioactive for a while and that crossing the border can trigger a fuss; who would have thought?

Wright, strange...but I am almost flattered you are intrigued. Will update when I know more. You ask about CMAP decreases on NCV, but I can't tell what CMAPs are. The results are listed in "side-to-side comparison tables" (motor, sensory, F-wave, H-reflex), so if you can tell me where to look I will let you know.

Thanks again, and please note the much shorter post than previous ones :)

Lydia
 
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