One Trip To A Neurologist, and Now I get To Be A Lab Rat For 2 Weeks

[Nobody]

So as most of you know, I have had quite a laundry list of medical issues spanning several years now. More recently, new symptoms have appeared, and some very concerning ones also.

Today I went to see a neurologist. He did a bunch of tests on me in the office that seemed like a really advanced sobriety test more than anything. After he was finished, he leaned back in his chair with a look of intense thought on his face, which worried me. He said it appears as though my eyes are able to move and focus independently of each other. He said that is not a cause for concern, but it's not normal either. He also said my reflex tests were abnormal.

He proceeded to tell me he's not the type of doctor that likes to speculate for months or years, doing test after test. He's more of a definitive explanation kind of guy. He then told me to list every symptom of any kind I have had during the last 2 years that did not have an obvious cause. Those symptoms are as follows.....

-My right arm does not move when I walk
-Anxiety
-Severe dry mouth
-Chronic constipation requiring Lactulose (November will make 2 years of this)
-Insomnia
-Stabbing pain in the left side of my head
-Sharp pain that moves from my spine to my collar bone and chest
-Dizzy spells
-Slurred speech on occasion
-Feeling cold or hot for no reason
-Facial twitching
-Foot tapping
-Hand tremors
-Wrist spasms
-Cervical Spondylosis
-Hypertension
-Heart palpitations
-Difficulty swallowing

After I wrote this all down, he told me he wanted me to have a battery of tests done to determine exactly what is causing all of this. Oddly enough, he believes every single one of these symptoms is related. So over the next two weeks, I have to have an EEG, NCS, and EMG test done. In addition, I also have to have an MRI of my brain without contrast, then another of my brain with Gadolinium contrast.

He wouldn't speculate on what he thinks it could be, because he said he doesn't like to worry patients with what ifs, and that on October 19th, he will have me back in his office to go over the results of all the tests.

On one hand, I feel relieved to know that since he is being so thorough, I am very likely to have an absolute and definitive diagnosis in two weeks. On the other hand, I am stressing out over wondering what he's leaning toward to want to order so many tests. I feel like a lab rat, but hopefully I will be a lab rat with an explanation. I will keep everyone posted.

 

[Om]

That list of symptoms ... forgive me for potentially inappropriate humor here brother, but ... have you by any chance been a Redskins fan during the affected time period?

The older I get, the more I come to realize just how inexact medical science, particularly diagnostically, still is. As a kid growing up in the West in the late 20th century, and having raised 3 little ones into the 21st, there was a certain feeling of surety about 1) finding out what was wrong, and 2) fixing it.

I've lost a large of part of that over the past few years however, as family and friends have dealt with uncertaintly over the cause of various often severe and frightening symptoms...some to this day without "resolution."

Life. It's still in charge.

Hang tough my friend. Thoughts are with you.

 

[servumtuum]

Extreme, my thoughts are with you as well-in fact I'd like to leave you with one.

Given the human imaginations ability, especially when guided by fear, to conjure up an amazing variety of worrisome scenarios-whether realistically plausible or not-these tests will do something very helpful to your emotional state.

By eliminating what's not the cause, your imagination will have the door into its ability to invent things to worry about slammed shut.

 

[Nobody]

have you thought that it could have been a stroke?

I actually had a stroke several years ago, that's how I was originally diagnosed with hypertension. Thing is, they never really did any thorough tests. At that time, the ER doc asked for my list of symptoms and did a catscan. After waiting for a few hours, he told me I had a very minor stroke, and that I had hypertension. He put me on Clonidine (which I'm still on) and I was on a blood thinner for a couple of weeks. Oddly enough, I had constant migraines my entire life up until that point, and have not had a single hint of one since. But I get headaches almost every day, so I can't really rule anything out.

Like others here have told me, at least I will get some sort of comfort from the tests, regardless of the results. I almost always only get a few hours of sleep a night for the past few years, and it's mainly from stress over worrying about what's wrong with me. They've put me on Ativan to help with that, but it had almost no effect.

I just worry, because my family medical history is so bad, so I'm paranoid about finding out what I have. On my dad's side, there is brain cancer, dementia, Parkinson's and strokes. On my mom's side, there's Parkinson's, MS and brain cancer. Not really a cheerful field to choose from.

 

[Nobody]

Thanks Mike. I'm leaning toward it being a brain thing myself. I haven't slept for so long over it, that regardless of the diagnosis, I'd rather know than wonder, so I look forward to finally getting some sleep again.

 

[McD5]

Positive thoughts from Florida, Extreme. I need to see a bunch of doctors too, but have just put it off for so long.

I'm glad that you decided to have it checked out.

Mike

 

[Nobody]

Positive thoughts from Florida, Extreme. I need to see a bunch of doctors too, but have just put it off for so long.

I'm glad that you decided to have it checked out.

Mike

I've learned from myself and from what other I know have gone through that putting it off is not worth it, no matter the condition. A lot of stuff can be cured if caught early, and waiting can make the difference between life, death or vegetable. Thanks for the thoughts buddy, now go get yourself checked out too

 

[burgold]

Best of luck, I hope they find something that they can do something about.

 

[gbear]

I had to laugh at the enhanced sobriety test of the standard neuro evaluation. I've often thought "this must be the source of sobriety tests" as I take the tests so it makes me wonder which is the chicken and which is the egg.

Good luck. At least it sounds like you have a better neuro this time. Also, be thankful he set a date to come back and get the results. When I had my first MRI I couldn't get an appointment for months to go over the results, so I ended up calling and getting the results faxed to me "as part of my records to take to a new doctor." For me it was "brain infection (not sick enough), testicular cancer (if it's in my head, then it has spread and I'm dead), or MS." I was pretty happy to hear MS.

Good luck. Let me know if there is anything I can do to help. Just remember know what the cause is doesn't ensure a cure or even an effective treatment for you, so don't get your hopes up. Oh and hurry up and buy long term care insurance because once you have a probable diagnosis, you will be either uninsurable or have your rates jacked through the roof. If the diagnosis is nothing, you are out a month's premium as you drop next month.

 

[Nobody]

I had to laugh at the enhanced sobriety test of the standard neuro evaluation. I've often thought "this must be the source of sobriety tests" as I take the tests so it makes me wonder which is the chicken and which is the egg.

Good luck. At least it sounds like you have a better neuro this time. Also, be thankful he set a date to come back and get the results. When I had my first MRI I couldn't get an appointment for months to go over the results, so I ended up calling and getting the results faxed to me "as part of my records to take to a new doctor." For me it was "brain infection (not sick enough), testicular cancer (if it's in my head, then it has spread and I'm dead), or MS." I was pretty happy to hear MS.

Good luck. Let me know if there is anything I can do to help. Just remember know what the cause is doesn't ensure a cure or even an effective treatment for you, so don't get your hopes up. Oh and hurry up and buy long term care insurance because once you have a probable diagnosis, you will be either uninsurable or have your rates jacked through the roof. If the diagnosis is nothing, you are out a month's premium as you drop next month.

I think the weirdest part was when the guy started tickling my feet. I was just sitting there thinking, "you better be buying me dinner before you try all this foreplay."

At this point, I'd be happy with anything that can't kill me really, as sad as that sounds.

 

[Nobody]

Today I had to have my first two tests done. They were the EMG and NCS tests. Both sucked, and both were nothing close to what I expected, and I never care to have either one done ever again. Since I am having problems on the right side of my body, both tests were done on my right leg, foot, arm and hand.

The EMG was first, and the lesser of the two evils bestowed upon me on this glorious day. I knew I was in trouble when the Neurologist walked in and asked me to get undressed and didn't have the courtesy to bring me flowers or take me out to dinner first. So there I am, in a robe with no ties, ass in the wind awaiting instructions. He has me lay on my back, and he proceeds to swab every inch of my hand, arm, leg and foot in alcohol. By the time he was done, I was as sterile as a unich. After he was finished, he pulled out something resembling a stun gun and looked me straight in the face and said,"this is probably going to hurt." Little did I know, that was his way of easing me into it. It was just shy of electrocution. As he hit spot after spot with electrical impulses, I cringed in discomfort, the whole time hoping he was almost done.

Now I have had to get electrode stimulation for muscles from an injury in the Army, but this was a whole new level of electricity. Oddly enough, and I am sure it's probably unrelated, I have not had a single palpitation since the test was done 7 hours ago. I can't remember ever going that long without one, so I won't complain too much. To give you an example of what it felt like, if you have ever stuck anything metal in a power outlet, it's slightly less comfortable than that. The worst spot by far was on the back of the knee. I have knee problems anyway, but this made it worse. He did find it interesting, however, that when he hit my foot, I didn't react. The test lasted about 15 minutes, then he said it was time for the more painful test. WTF?

He pulls out a sterilized needle, about 3 inches in length and attached to wires and some machine that I have never seen. One wire went to a screen that showed readings like a polygraph would show, and the other to a speaker. He said it was to test the response of my nerves to pain, and to listen to the sound responses as well. He then marked off a dozen or so spots on my hand and arm, then another dozen or so on my leg and foot.

After sterilizing each spot, he began jamming this needle into all of the marked spots, moving it around for a second, then going on to the next one. Saying this hurts would be like saying getting a tooth pulled without Novocaine is uncomfortable. I have an extremely high pain tolerance, but this **** was borderline completely unbearable.

Some spots (shin, wrist, forearm) didn't make me feel a thing. Then he jabbed the webbing between my thumb and index finger, and I am pretty sure I felt a squirt of piss come out. Then he hit a spot on my shoulder that still hurts just as bad now as when he did it. The best I can describe that is like getting a charlie horse that just won't go away. Here I was, hoping that was the worst of it, but oh how I wish.

When he started jabbing my leg, I thought nothing of it. It definitely hurt less than the arm. Then he let me know the worst two spots were coming. The first of the two was the instep. Holy mother of ****. Picture driving a dull nail into the inner edge of your foot, toward the heel. The pain from that shot through my entire body. But I was about to find out that just like an infomercial, there was more. He told me to grab on to the rail and bite down and scream if I had to, as he jabbed it into my inner thigh, slightly above my knee. oddly enough, the sensation I got was nowhere near that spot. Instead, it was like getting your balls stomped in by a pair of steel toed boots. It was so intense that I tasted iron in my throat and got a stomach ache. The pain made me dizzy for a second from the intensity of it, but at least it was finally over. After that, my groin hurt for a few hours, but it subsided to my joy.

All in all, it was about 50 times worse than I expected. I feel like I got the **** kicked out of me without seeing it coming. Thankfully, he said the other tests I am getting done on the 18th do not involve any more pain.

He was unable to give me the results, because he said he had to do some calculations and read over everything and listen to the nerve response recording again. He said it will guide him to a diagnosis though, because there were some abnormal results that require further calculations. He said had it been normal, the results would have jumped out showing it was normal, so that's why I have to wait for results.

He didn't seem overly concerned, but he's Indian, and I have never had an Indian doctor that wasn't impossible to get a read on, so I have to wait.

3 more tests to go on the 18th, then results for everything on the 19th. Word of wisdom if any of you ever has to have these tests done, don't believe anyone the downplays the pain of it all, it sucks.

 

[gbear]

Yikes. Nerve tests suck. Anyone who has ever had a pinched nerve can imagine what it's like to actively try to stimulate those pain points. Crazy.

Sorry you are going through this, atleast you are doing so with the hope of gaining knowlege about what it is you are fighting. I meanto writeh this earlier, but if you haven't had the MRI with and without contrast, don't fret it as two MRI's. Every time I've had an MRI, they have taken me out of the tunnel about 2/3 to 3/4 of the way through to inject the contrast. Then it's back into the tunnel to finish. Just note when you get the contrast, you are almost done.

On the fun things to do in an MRI front, if they have a mirror which lets you see out and are lucky enough to be able to see a clock, try closing your eyes and seeing how close to a minute you can get when you open them again. If there is no mirror or clock, ask to be told how long each scan is and to be told when they are starting a new one. Of course that's the expert level of the game as you can be trying to time 5 to 8 min for some of the scans. Alternative number two for me was to enjoy the rythm and try to go to sleep. With 3 dogs and 3 kids right now, the clang of the MRI sounds peaceful.

Good luck.

 

[Nobody]

Yikes. Nerve tests suck. Anyone who has ever had a pinched nerve can imagine what it's like to actively try to stimulate those pain points. Crazy.

Sorry you are going through this, atleast you are doing so with the hope of gaining knowlege about what it is you are fighting. I meanto writeh this earlier, but if you haven't had the MRI with and without contrast, don't fret it as two MRI's. Every time I've had an MRI, they have taken me out of the tunnel about 2/3 to 3/4 of the way through to inject the contrast. Then it's back into the tunnel to finish. Just note when you get the contrast, you are almost done.

On the fun things to do in an MRI front, if they have a mirror which lets you see out and are lucky enough to be able to see a clock, try closing your eyes and seeing how close to a minute you can get when you open them again. If there is no mirror or clock, ask to be told how long each scan is and to be told when they are starting a new one. Of course that's the expert level of the game as you can be trying to time 5 to 8 min for some of the scans. Alternative number two for me was to enjoy the rythm and try to go to sleep. With 3 dogs and 3 kids right now, the clang of the MRI sounds peaceful.

Good luck.

Thanks buddy, it definitely helps to know what to expect. I was fretting the MRIs, because I was thinking it would be two different trips inside the tube, which would obviously suck. How long does it usually take? I have heard anywhere from 20 minutes to an hour, and neither sounds right to me. I had one done on my knees that took about 20 minutes, so I would think the brain would take longer, but an hour sounds excessive.

The funny thing was when the guy asked me on the phone when I was scheduling it if I was claustrophobic. My response was, "I guess we'll find out." I'm not one to freak out, but I don't do well laying on my back for more than a few minutes, so it will be uncomfortable I'm sure, but I don't anticipate having an anxiety attack. I also hate Valium, Ativan, etc. so I know I'm not taking that route.

 

[gbear]

Time: it depends on a few things, but the biggest determinate is the size of the area they are scanning. When I was first diagnosed with MS, I had 2 scans of my brain and spine. The added part firthe spine was about 30-40 min if I remember correct (my brain sucks some days). The scans of my brain have been anywhere from 20 min on the Hopkins new uber MRI machine to 35-40 min on their regular MRI machines. I was pretty happy that somebody had canceled last min on the new machine so they just moved my appointment to the new machine which was sitting unused.

The laying down unmoving is the hardest part. If it is a head scan, your kneck will be immobilized by a restraint. The worst part for me was thinking "what if my nose itches? I can't scratch it." You know what happens when you have these thoughts right? 10 seconds later began 20 min of nose itches. The need for a swallow or cough isn't my favorite either as the movement of yoru head can make them start a portion over to get a non shaky picture. Think of it like trying to take a picture with your camera. If your hands shake, the image sucks, and MRIs are way too expensive for crappy pictures. So the MRI tech will usually retake.

As for time spent laying down in one spot, it always makes my butt hurt, but atleast they let me bend my knees or cross them or move in general because they are outside the machine. Just no movement allowed during a scan. If you are really lucky, I had one MRI where I could listen to music from a station I picked through ear phones. I was asleep in minutes and only woke briefly for the contrast.

Don't worry. Compared with what yo went through already, the MRI is a walk in the park on a nice fall day.

 

[Nobody]

Good stuff to know. I know now that as soon as they put me in, I'll be thinking about this thread and my entire face will itch

The hospital I'm going to is pretty advanced, so I'm hoping that means new technology. As long as it isn't an hour or more, it's not a problem. 20-30 minutes would be a walk in the park.

 

[Dik Shuttle]

Man, good to see your sense of humor through all of this. I'd be scared CowPatty less.

The only experience I have with neurological testing was at some quack's office in North Miamuh Beach after I had two successive car accidents, a week apart. Some conservative dyke (no offense, LGBT lobby - but that's what she was) with a wicken pendant basically tasered me in about 10 different places. I swear she was enjoying it. Fkuck her & the quack. Bad frekkin' Karma, man.

My rescue came after two years of crippling back pain, intermittent bedriddenness & 30 lbs. of weight gain 'cause I could exercise OR cook... this was right when Papa Johns was starting...egh. I went to a friend of my mothers, Vietnamese guy w/o a medical license. He took my "pulses", told me not to eat anything green (awesmoe!) and did about 30 minutes of manipulation on a couple points - the next day, after two years of constant pain, I was playing football. Every now and again, flare ups - but nothing a few minor manipulations can't fix.

I realize this has nothing to with Extreme's troubles - just trying to share a little levity. Stay strong, Extreme!

 

[gbear]

If you are worried about the hour time mark, you can always hope the tech takes the car ride approach my parents took with me. It was always 10 more min till we could stop...for the length of the NJ turnpike...in 10 minutes of parent time. Peeing never felt so good.

As for the tech of the place, Hopkins isn't a slouch for new tech, but each of those machines costs close to a million with maitenance costs in the 6 digits, so the replacement timeline isn't yearly. Don't take it as a knock on them if the machine isn't from the last 2 or 3 years. Having an MRI machine is no small accomplishment. I think I've had an MRI in at least 4 different MRI machines at Hopkins in downtown Baltimore. Only one was the higher resolution quicker scan, and only one (a different one) let me have ear phones. I've done an open MRI at a clinic, and claustrophobia is the only reason I would ever suggest those. I thought it was the least comfortable, and usually the resolution isn't as good.

I've sadly had enough MRIs that when the reactor issues in Japan had everyone in the media scared by what they were being exposed to while covering the story, I was looking at the numbers thinking I've gone through those numbers with the 8 MRIs I've had (now 9).

 

[Nobody]

All my tests are done, and I thought that would bring me a bit of relief. Instead, I'm having more trouble trying to sleep tonight than normal. I get the results at 11 tomorrow morning, but my brain won't seem to let me do anything but worry, even though I thought I got that all out of the way over the past 2 weeks. It sucks not knowing and having to wait and worry, but hopefully the morning will bring some relief and some good news.

 

[Nobody]

So I got most of my results. The good news, (or bad to some of you really warped individuals ) is that whatever is wrong with me isn't fatal.

The MRI showed no tumors, evidence of a minor stroke (which I already knew about) and no lesions that would indicate MS. The nerve tests came back with only slightly slow response time to pain stimuli.

The only results we are waiting for now, are the EEG results. He said it will be a few more days before the results come in, and he will be in India when they do (which sucks). As a result, I have to wait until he gets back on November 28th to get the results of that.

He said that since he was able to rule out the fatal and possibly fatal conditions, I will hopefully sleep a lot better knowing whatever I have won't kill me, but he still won't speculate while he waits on the EEG.

 

[gbear]

Oy...

fatal & possibly fatal ruled out doesn't hurt, but doesn't really help that much either unless he qualified it well. I mean MS doesn't kill anyone or so many believe (though my step dad's mom had a lesion on her brain stem which stopped her breathing so he might differ). However, even if one believes MS doesn't kill, those with MS live on average 8 years shorter lives. So the real question is will the condition change your life dramatically or can you go back to business as usual.

Still, glad to hear you're not likely to drop dead from a neuro condition any time soon.