Doctors not thinking outside their little box.....

[Wendy Lee]

I swear, it's a conspiracy. To make me live the rest of my life in a fugue like state.

Meaning, epileptic f. a fuguelike state of running or wandering that occasionally occurs as an ictal or postictal phenomenon in psychomotor (temporal lobe) epilepsy.

Went to the upper extremity doctor today, and found out he doesn't work on this sort of thing. Well crap, if I had know he worked on wrist, elbow or humerous nerve compression only, I would have opted out of seeing him. What a joke. I think this appt was made only because when the spine guy tapped my elbow it twanged. He had no answers to the hiked shoulder, the paralyzed hand and arm muscles and why it brought major pain to the neck when I tried to lift the arm. Clueless. What a surprise. They are going to make an appt to have another EMG done. But this was even reluctently agreed to.

I have another PCP appt tomorrow for the forehead paralysis. I will have to talk with her about an MRI on the neck TISSUE, where the flesh actually hurts. I have not taken any meds since this morning and don't intend to before her appt either. I hope I have an episode start in the morning. If it takes 30 minutes to get one block (I'll be walking) so be it. If not, I'll be camping on their doorstep next week when the next one hits me at work. I am so disgusted with this, can you tell?

You know what really scares me? It's that the forehead has been involved from the start, with the arm, and the arm got painful and then some muscles quit. Then the head has been really painful for a while, and then the forehead quit. So with all the other stuff that gets painful when I have an episode, what else is going to quit on me?

[swhite1]

Wendy Lee
I wish I could do something or say something to help ease the additional and apparently necessary grief you are faced with. Can't we just have our specific injuries(BPI's) to live with and have everything else dealt with in a timely, painless manner for cryin out loud? I was a loyal state of Texas employee for thirteen years and my neck and back problems forced me to take my disability retirement. That was in May '05. February 13, 2006(day after my 52nd birthday) I was driving my wife's Acura to an medical appointment when I was T-Boned on drivers side by a Blazer and totaled her car and stung the crap outta me. My whole left side was ringing yet I refused medical attention because I wanted to explain her totaled car in person. From that point on in our lives I felt I was doomed. I was fighting for my retirement, the state wanted state paperwork filled out by federal employees and I just could not get that to happen. She left me with her fathers interference and 1 week later I was hit by a car which broke three ribs. One week later I had my episode, allergic reaction, stroke whatever I just thought it wouldn't end. Well I am still here. I am too stupid to stay down. I don't get it but if sharing just a minute of my life(???) helps another or just puts a smile on ones face I'm guessing it's worth it.

So the long and short of it, and I am genuinely concerned for you, how are you doing after your appointment for the forehead paralysis?
My best and warmest to you,
Scott

[Carolyn J]

Wendy,

My advice to stop going in circles...keep it simple, search Mayo's BPI Team and make an apointment there ASAP.

Keep us all posted on your "journey". We all learn something from each other no matter what Message Board we come to.

<<<<HUG)))),
Carolyn J
Adult LOBPI/69


Message was edited by: Carolyn J

[swhite1]

Carolyn J, you advised Wendy Lee to search out Mayo and make an appointment. Forgive me if you've already directed me but are there Mayo's everywhere? and appointments made over the phone? How about travel? I'm such a idiot as of late and often need my hand held or I will fall. Guaranteed I'll fall.
Did you get your outlook taken care of?
My best to you.
Scott
You know what? With a little due diligence and a couple of pokes on the keyboard I found the Mayo Clinic in Scotdsdale Az. One of brothers lives in Chandler or Gilbert can't remember duh??? I remember his name anyway that is important. Now as the fall is arriving and soon to be cold an wet here in north Texas mayb e I can work something out? Okay so wherev do I begin? I doubt the federal government (VA) will refer me let alone fund my trip. Nor do I believe Social Security will either. I certainly can't afford it and I certainly can not write my own referall. What if I grabbed a bedroll stuck out my thumb and showed up on their doorstep? Will they take me? Oh...all these questions and typing...I've got to rest,


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[Wendy Lee]

Hi Carolyn. Well I am sure trying not to go in circles, I just think I need to ask more questions before I walk out the door. .....sigh.....

The bright side is this next Monday I am going to see the very best EMG doctor in the state of Illinois. He also tests cranial nerves. He's eccentric to the tenth degree, but the best there is. A freind of ours had nerve damage in his arm and Barnes Hospital wouldn't see him until this doctor had tested him. He is that good.

The possibility that I am having seizures is not that great, not true seizures anyway. I think it is revovling around the facial nerve VII and the platysma muscle. It is a thin tough muscle that covers the neck from the chin to pretty much cover the deltoid muscle and down to the upper parts of the pectoral muscles. It turns into a broad sheet of fascia over the pecs. This has been a paralyzed area as well, which sometimes starts pulling. This strange muscle ( not much on the web about it) is innervated by the facial nerve, from the cervical branch, and might also be the cause of nerve compression on the bad arm muscles. Maybe. All speculation until I get in to see the EMG guy. I think when it goes into spasm it starts problems with the facial nerve and since it is derived directly from the brain or brainstem, pain signals go up, then all the other muscles start reacting and tightening up and squeezing the crap out of the spinal cord and cerebellum (controls muscle actions) and my muscles all over start getting the same message to tighten up. The problem comes when the brain neglects to send the message to relax the muscles. And so I have tensed muscles right down to my toes. Before the zanaflex meds. I would be like that for up to 12+ hours. Just popping the painkillers. I had two mild episodes today at work which mainly stayed in the head, neck and arms. It can be like this, a few mild episodes, and then I get a really bad one where I can sit there pretty much in a stuper till meds kick in. My doctor wants me to get an EEG done when one of these come on me to see what brainwaves are doing. So we'll see if we can work this out. I would not want to do this after work because I'd have to go to the ER, and that would cost me a bundle since I have a co-pay for a while.

[Wendy Lee]

Scott since you worked for a government entity you kinda know what I deal with. I do have a neurological appt with a SIU doctor. A woman, who has published papers on nerve palsys. So we'll see how we do with her. It's not till 10/15 and if she shrugs her shoulders about my problem even with the EMG, then we'll see about Mayo. It's also possible I have a temporal bone fracture that was missed on the CT scan which is giving me problems, and/or at its worst time, edema and swelling. The problem of course is the length of time we all go through an injury before it gets dx'ed. The longer it goes, the less likely surgeries could fix it. So Scott, do what you need to do to get there, a referral if needed. You might just call them to find out if they have assistance programs that could help a Veteran. You won't know until you call them. If you are having problems with dealing with them, wouldn't the VA hospital have a dept. that can help you?

Say, how are you doing without that med you were taking at night?

[swhite1]

Well, Wendy Lee please don't tell me you are still working full time? I can't believe you work at all. Can't you take Disability Retirement? My God reading you war stories always bring me down so that mine are so triveal(sp?) Don't get me wrong and stop posting or venting I think I refered to it as once. This place happens to be my only sactuary. I know no one else that would even remotly give a crap about how I feel or in some cases don't feel. I can barely manage a day of appointments, the V.A. is 28 miles away. I drive myself and parking is like 5 miles away from the nearest entrance. It's not really but carrying this limb in the Texas sun makes it seem so. Then there's the walk and the standing wait which, by the way, the V.A. is infamous for. Such a cry-baby I am. I know y'all have it tuffer 'n me. I am so saddened to read all these horror stories. I've said it before and I'll say it again, I get so caught up in what maybe called threads? that I lose all perspective of time and sense that I forget what specifically I was up to and have to log off and walk away.

I stopped taking amitriptilyne (against better judgement than you very much) and for three days just could not sleep. I wasn't aware that med had anything to do with my sleeping problem. Now I have arranged to talk to phsyc. to find out what I can stop and under medical supervision.

I don't have any insurance.
Mayo(Arizona) and winter look so good together. I have registered on their website so they can begin to know who I am(that'll make on of us...ha, ha, ha?. I will continue this process and if it rattles the VA cage enough to look into me a little closer well so be it. I'll go where I can make the flow.
I was recently mailed an appointment for lab and mri the first week of Oct. The lab is to determine if my liver can handle the dye? Please tell me it isn't one of those archaic dye in the head upside down headache and spinal problem kind of dye mri's? Please?

My best to you and peace out,
Scott


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[Wendy Lee]

Yes I am working. I don't have a strenuous job and upper mgt. is very understanding. I have to say it is getting better, although slowly. I haven't had a bad episode start in a bit over a week now, only short durations of intense muscle spasms in the head, neck and shoulders. These come on several times a day every other day or so and seem to be lasting only an hour at best. Otherwise, it is just the spasms in the pecs and neck when I overreach.

I feel for you Scott, you've had so much more happen to you in such a short period of time, and with very little medical input at your end. It makes me really sad that neurologists and others in the medical community appear to care so little when it comes to treating pain such as what all in the forum here go through. Pain is like that elusive virus syndrome that is rarely cured. All we seem to get instead is accused of malingering or exagerating our symptoms. And these are typically from the same people we seek help from.

I recall reading in one of your posts you had simply stopped taking the amitriptilyne not long ago. I take it you didn't talk to the pharmacist or doctor before you stopped. I'm sure there are other things you can take to maybe replace it,and I'm glad you will be doing this with your doctor. Take the opportunity to talk about Mayo perhaps, to see how they could help if their ideas are lacking.

No the dye lab test is probably due to the fact some people have had problems with it, and perhaps their concerned with your liver. What with the spider bite and the other drugs you've taken. The MRI and dye is not the head down thing that's been a problem to some here. A simple injection to run dye into your tissue, and into the MRI you go.