Need input

[Izzy_*now*]

if you stretch both your arms up with hands behind your head and stretch, do your teeth gnash uncontrollably? Then when you lower you arms your shoulders shake up and down, your head twitches, as well as your facce, and your teeth continue gnashing and then everything settles down.

sounds quite normal eh?

and if your doctor says there is no diagnosis for this, you just accept this forever. (He gives you that in writing.)

All but the shoulder shaking happens when, in sitting position, you try to lift your left knee upwards.


Izzy

[lighter]

My God, Izz.

Can't you see some other doctor?

Maybe a neuromuscular T?

What you're going through isn't normal for anyone, including you, and that damned doctor just can't be bothered to refer you or figure it out, IMO.

How're you doing, besides these symptoms?

Lighter

[Izzy_*now*]

Hi Mo2

I feel quite sure that it is as a result of a pull on my Harrington Rods that have been there, and no bother for almost 40 years, when this car struck me and the resulting avenues of help taken.

A neurologist implied that I was faking it, but tonight I was out with my nephew, who is in town until tomorrow. He took me to dinner at 'Le Grande Hotel''and afterward to the Casino, where we won $182.00 over and above the $160.00 we spent so $342.00 and split it. While at dinner I stretched one arm rather invisibly and told him to watch my face, and he said it scared him to death. He didn't think it was at all put on, and wondered if I were 'still in there'.

His suggestion, since this happens mainly at home when I'm alone and mainly in bed, or just getting out of bed in the morning, that I go to a sleep clinic and have a camera on me.

Since my referrals have to go through my doctor and he has said no one will have a diagnosis for this, and that I am over-doctoring, I will have to by-pass him--that means Money out of Pocket for no referral, so I have told my lawyer that we go to claim/court with this problem as a steady problem, settle and I will approach the issue afterward.

Now we haven't clarified that, as I now have 3 sessions booked with the grief counselor regarding my lack of motivation, especially re housework---part of which involves reaching, stretching, then the tremors and shakes, again only at home, and maybe even she will have an idea for me.

Maybe a Physiatrist, Dr. of Physical Medicine

Otherwise my physical therapy is coming along, still improving, but in the long run, I believe that one big loss will be the use of my left leg. I can move it in certain ways, with much tenderness, but have to 'plant it where I want it' with my 2 hands.

This nephew fell some 8 years ago, same break, but has the hardware and he, GET THIS, never had this excruiating pain, as I have had-- NEVER. So that makes me different and maybe why I was treated like I ought to be doing all my work earlier, stop faking that I was in pain....he now walks with a cane and becomes very tired-- is 64. Last time he was out here, he had no cane, but when he was tired his foot just dragged, as he couldn't lift it up. His fall happened on a cold, cold day and he never had any swelling either.

Strange how the same injury, broken in same place, have two different after effects.

[Hopalong]

Ohh (((((((((Izz))))))))))).

I am so sorry.

I think the web cam or Nanny cam on yourself is a GREAT idea.

Ask your lawyer how to set this up so that it can be used as evidence.
(IOW, should there be a time stamp, etc...)

You are so smart.

Knowing how you love your home, I can imagine how incredibly frustrating it is to deal with pain and shakes when all you want to do is manage.

love, compassion, comfort...

Hops

[Izzy_*now*]

AH! a nanny cam--wonderful idea, Hops.

now to become motivated to look for one

My best to you and your D

Love
Izzy

[Hopalong]

You BET you're motivated, Izz...

You're tired of the struggle but you're still IZZY.

Who
does
not
give
up

xo
Hops

[sKePTiKal]

Hey Iz,

there might be a nerve or muscle related dysfunction that's part of what you're describing... but both of those kinds of signals go through your brain, anyway and control that kind of activity. A neurologist is my suggestion. Any chance some of your medication is affecting parts of your brain - perhaps the parts that control these kinds of involuntary movements?

I hope you get it all sorted out! If it isn't one thing, it's another - huh?

[Izzy_*now*]

Hi PR

My MD, at my request, sent me to a Neurologist, and the Neurologist was just a guy who half listened and wrote down his notes, which I received 2 weeks later. His general consensus was that I was putting it on. A**hole

I went back to my MD, who wouldn't talk against the Neurologist's report, and asked to see a physiatrist, and he said I was over-doctoring, that no one would be able to give me a diagnosis.

Puts me in a hard place as now my MD is no good to me at all.

I sense there is a damaged nerve under the rods in my back, the top tip between my shoulder blades, and just want an answer----especially now that I appear to the layperson liar with the nerve damage and the professionals are too lazy to run an EKG? MRI? whatever will show if tearing took place under the stainless steel that shows up in only regular x-rays along with the spine. I sense pressure on it and the the rod tip coud be removed.

What are they afraid of? Sheesh!!

[sKePTiKal]

HUH - so he's suggesting that involuntary muscle movements are psychosomatic???? (therefore the referral to a psychiatrist...)

I guess it's one possibility, but surely it's not the most likely or probable. It would take longer, but perhaps if you were able to convince the psychiatrist that you're not "making it all up" or having a psychosomatic reaction... perhaps he would be able to advocate with the MDs for you.

I think your MD and neurologist are lazy. Yes, it will take some detective work to get to the source of these symptoms... but wouldn't that be a worthwhile endeavor (for you, of course...) but also for "science"? It boggles my mind that the docs don't have enough curiosity and motivation to learn something through trying to help their patients.

[Izzy_*now*]

No, he (MD) did not suggest a psychiatrist. I asked for a physiatrist, a Dr. of Physical Medicine. They work in Rehabilitation clinics/hospitals with spinal cord injuries.

My back was broken in 1969 and the surgery included Harrington Rods to support my healing spine. I was 3 months in hospital, 2 on a stryker frame and one in bed, then 9 months in a Rehab hospital for therapy etc, and there were two physiatrists there. I gained enough from the paralysis to ambulate on crutches but also used a wheelchair and was 31 when I was released--40 years ago. It is said that if there is no problem with the Rods in the first 10 years, one will have them for life.

So I hade a pre-existing injury when the car hit me last year. Is this too difficult for the medical profession to understand?

The insurance Co for the driver hired Mary Jo, an Occupational Therapist, to see what apparatus (apparati?) I would need in my healing. One she suggested was a trapeze over my bed. I said 'no', that I wanted to regain the strength in my waist, alone, to sit up again. She said it would relieve the pain in my leg, and I never really said yes, and there it was. I used it one handedly, left arm to pull up my weight to sit up then transfer to my wheelchair, then the opposite arm to grab the trapeze to assist me back into bed, because it was there. One day there was an awful pull under the top of my Rods, between my shoulder blades, and when it happened the second time, I stopped using the trapeze, told her about the pain, and asked for it to be removed. However the pain under my Rods never stopped and pressure on that area makes me go into the shakes. I suggest damaged nerve or nerves, roots maybe, but can anyone understand?

I liken it to wiggling a cork out of a bottle, back and forth, back and forth until finally pop! ....one arm then the other, then back then the other and finally POP!

but you are on the same track I am on. Why would some doctor not want to make a name for himself, get written up in the medical journals for having learned something?

....and help me at the same time. Just a small incision, saw off the tip of the rod and relieve the pressure.

Not being in the profession I wonder if I am making myself clear. Can you picture it?

Then stretching my arms straight out from my sides, I expect if they were to meet in the middle, they would land very close to this rod tip. All nerves in the thoracic area affect the arms and shoulders.

Nerves in the brain affect the face and even though I have told them all that I hit my head when I landed,  (I don't remember but my eyeglass frames, metal, were quite bent) then an EEG or MRI or a CT might be called for, but sínce I am 'talking nonsense" would make a better reason to test my head. However, I make perfect sense to me, until I am told differently and this problem is resolved.

Last night in the Grand Hotel with my out-of-town nephew I moved my left arm until the pain came and it set off everything and 'scared him to death,' he said, and 'don't do it again'!
 

[sKePTiKal]

It's a catch-22, isn't it?

Sorry, I didn't catch the difference in the words! Big difference. Well, I think you're on the right track to sorting out what's going on, even if the "experts" aren't. I've never tried it, but I wonder if acupuncture might "re-balance" some of the misfiring nerves?

[debkor]

Hey IZ,

I don't know what they are thinking.  It is happening to you.  Yes there will be a Dr. who can help you.  Just have to find the right one. I know you want to pull your hair out or theirs.

With children you are always at the Dr.s so you get to know the nurses and when I needed a name for a specialist ...I asked them. 
 
Sometimes I trust them more then the Dr.  They were always right on!

And sometimes I should. 

My S's Dr's partner had to see my S one time (for his long going infection) a lymphnode the size of an egg for months that no one knew what infection it was..no test...
putting off surgery they would have to take everything and around it (which I was not comfortable with anyway)....to the partner he had to see one day calling in a surgeon (not my S's) not the hospital it would be done in ....and I looked at the nurse.  She didn't say a word but she said many things.  I refused.

And Thank God I did.

I knew what I knew (in my heart of hearts) my child needed an Infectious Disease Dr. and had all Dr's except that one. 
I insisted or I'd leave the state if needed.  I was given two names...I asked who would you use for your kid?  He gave me the name.
I checked with the nurse...and then I made a decision.

He was seen by the best, tested, knew the infection, treated for 6 weeks with meds and was fine.  No surgery. 

I'm sorry Iz. I know the frustration (never mind the pain your in)  we don't know, no one will, it's in your head.

Grrrrr.....

Love
Deb

[Izzy_*now*]

hi PR,
I thought you missed the difference. I never called them physiatrists. I called them Dr. Jousse and Dr. Geisler.  

Then I called them Drs. of Physical Medicine, but now.....

...I am thinking of alternative medicine as you suggested, and all my lawyer can say is if we go to claim with this mess and claim more so I can take my time in finding the right answer. I expect I will bypass my MD and go to a physiatrist first, then speak with the alternatives..I have a sister who can advise...but it bugs me that it is physical....



and deb

--yes in my head and body. In some of my research on the Internet I find that there are differences in what Drs. have told me. The Neurologist said the facial tremors and tics come from the nerves in the brain, BUT---- aren't our brains without nerves? no feeling when cut in surgery etc? I see on the Internet that the cervical (neck) nerves of the spinal column at C1 are for the face etc. and skin over our skull but I doubt there are internal nerves.

Good on your for your son. Being able to step back and be objective is good.

 xx
Izzy

[Hopalong]

a ton of love and comfort to you Izz

every

single

nerve


Please DO keep at it with your lawyer.

I like that idea -- settle for more and then look for your answers freely, from whatever source.

I am wishing I could send Amazonian magical potent medicines through the ether.

I know your moments of ease, and bodily peace, and even TYPING...are so precious.

I am really grateful that you share your struggle here.

Much love and deep sweet restoring sleep to you....

Hops

[sKePTiKal]

Yes, Izz... it's just awful if you feel your body (or brain) is tangled up somehow; not working normally - and you're not taken seriously by the folks who are supposed to help you. Personally, I've kinda been fighting that battle for a long time and you really can't give up - even though you do get soooooo tired. For me, a massage can work wonders (temporarily) - even on strange nerve twinges and chronically tight muscles. Problem is, convincing myself to go schedule one and actually going; surrendering to it and just enjoying it.

It might help you, too. Maybe with a rehab massage - you'll be able to pinpoint the source - the muscle or joint or rod area that is responsible for the tangled up nerve signals getting sent to your brain. I've found the masseuse can be a great helped and is willing to hear me out about what's going on with my body - and then we talk back & forth while she's exploring that spot and trying to "fix" it... or at least soothe it. It might not completely solve the problem; but it might help with the symptoms some.