Due to your physical condition have you been adviced to see a psycoanalyst?

[Lindox]

And who adviced you?
Thanks.

[lynnifer]

Does this count? When I first became paralyzed, the ER docs thought I was faking it. Even when they were poking me with sharp instruments and I wasn't flinching, I still got asked a whole barrage of questions like .. does your mom or dad hurt you .. anyone die in your family recently .. etc

[Lindox]

Does this count? When I first became paralyzed, the ER docs thought I was faking it. Even when they were poking me with sharp instruments and I wasn't flinching, I still got asked a whole barrage of questions like .. does your mom or dad hurt you .. anyone die in your family recently .. etc

lynnifer,
I suppose that would count really.
It is very surprising to me what medicine has come to.

My provider since HE thinks I shouldn't use my crutches any more and go into a WC, and I don't think that I should that I am the one that needs to relive my entire life through some shrink..and what bothers me is this I feel is becoming a fad led by doctors like Bruno et. al.

Our providers are giving up due to them not having anything worth a damn to really deal with the reasons we are declining..well what good will it do for us to PAY a shrink when it is their guilt from not having anything that is running their lives and trying to run ours.

I am wondering how many people and conditions are getting this lip service.
And if it's only one condition..well stop the fing drama Bruno you VAMPIRE.

[thenose]

Lindox,
I dont pretend to have the answer for anyone else, but have you thought about how the crutches may affect you in years to come? Not that I am invested one way or the other...but a 60 year old friend of mine who was injured at 17 made life hell for himself by refusing to make use of a powerchair. His arms and shoulders are junk and he has constant pain form it...unable to feed himself currently because of it.

He now says he wished he had taken advantage of the powerchair for outside the home type stuff and saved his upper body joints a bit.


As for the shrink thingie...it is a ass covering thing now if anyone seems sad or angry. If anyone freaks out and kills someone or themselves...the care provider can say they suggested counseling.

:nono:

[wheeliecoach]

My doctors when first trying to diagnose me dismissed my "abnormalities" that showed up on my EMGs as non-events. They told me I should go see someone and that they may be able to help me. They also felt that since my roommate/best friend is in a chair I was wanting to be like her. That was 4 years ago....now I have progressed in my disease that everyone can tell there is something wrong with me...I wonder which is better for them...dismissing you or telling you something you already knew once they themselves could not deny it any longer???

[Lindox]

Lindox,
I dont pretend to have the answer for anyone else, but have you thought about how the crutches may affect you in years to come? Not that I am invested one way or the other...but a 60 year old friend of mine who was injured at 17 made life hell for himself by refusing to make use of a powerchair. His arms and shoulders are junk and he has constant pain form it...unable to feed himself currently because of it.

He now says he wished he had taken advantage of the powerchair for outside the home type stuff and saved his upper body joints a bit.


As for the shrink thingie...it is a ass covering thing now if anyone seems sad or angry. If anyone freaks out and kills someone or themselves...the care provider can say they suggested counseling.

:nono:

thenose,
I love the picture of your puppy.
And do realize that years of overuse causes joint deterioration..same as it does for anyone that live past 40 I imagine.

I will realize WHEN it is time to go to wheelchair use. And not be insane about it. Just now isn't the time. And sitting for too long when you have metal in most of your hips and lower body is NOT comfortable either in anyway.

This comment being made by my supposed used to be medical provider isn't what I expected if he really does know me..which he must not by his comment.

He has suggested this before..why I don't know except he is reading what the biggies think and beleives every word of it.
What would be beneficial would be crutch tips that can defy hydroplaning. Of course we don't have that capability.

I am not depressed, suicidal, manic, or even have a criminal record of any kind. Thus his referral might be better used by someone that does. I have no alcohol or drug addiction..or desire to kill.

AND think that this shrink being used to treat a physical condition is BS.
The biggies have done all the papers on people that have had polio..and the ones with the most emotional
upset are those that recovered the most thus if they have problems loosing NORMAL then let them be analyzed. If they choose to be.

If that's all they got..well they can keep it.

Your post kind of shows WHY we don't need this FAD.
And that is what it is. A melodrama to benefit highly educated people that don't have one iota of common sense.

I won't though lay down and let these people bring ANOTHER misconception for their profiteering.
This damn disease isn't going to take my mind ever..it
can't. So medical experts why not use your writing skills to formulate a descent crutch tip. Because I am going to need many more before this is over.

[Sue Pendleton]

I had some serious left arm and chest pain. Went in to the see the doc right away and got stuck with a dfferent doc than my normal guy. A Russian physician new to the team. She listened to my back and wrote me a script for Prozac.

I had an appointment the next day at Walter Reed with my physiatrist and told him. He wheeled me directly to the EKG lady. Asked if I punched the nitwit. I was very tempted but left it at informing her this is why more women than men die from heart attacks. My EKG was ok. I had an entrapped nerve but it seems with all the UTIs, etc., we are at higher risk for endocarditis. Man, that bugger hurt and ate a couple asprin.

[Lindox]

I had some serious left arm and chest pain. Went in to the see the doc right away and got stuck with a dfferent doc than my normal guy. A Russian physician new to the team. She listened to my back and wrote me a script for Prozac.

I had an appointment the next day at Walter Reed with my physiatrist and told him. He wheeled me directly to the EKG lady. Asked if I punched the nitwit. I was very tempted but left it at informing her this is why more women than men die from heart attacks. My EKG was ok. I had an entrapped nerve but it seems with all the UTIs, etc., we are at higher risk for endocarditis. Man, that bugger hurt and ate a couple asprin.

Glad to hear that it was NOT heart related. Sorry Sue..that you have to be exposed to this type of care.

Prozac..yep the cure all for all.

Another reason NOT to go into the chair until and unless it is ABSOLUTELY necessary. And I am so sorry that it is for so many people.

Especially when we get over 45, 55..yuck etc.
How many after going into the chair have hypertension..heart attacks..blood clots..insane cholesterol levels? Why not do a study in that area?
Then maybe more money would be devoted so those that can't afford to go swimming..and get standing frames and those FES bikes and any other way to stay moving could be stayed moving.

BTW when is your shrink appointment? Hey you got the Prozac already. Not funny really. Who is teaching these newage wonder docs anyway?

[Sue Pendleton]

Glad to hear that it was NOT heart related. Sorry Sue..that you have to be exposed to this type of care.

Prozac..yep the cure all for all.

Another reason NOT to go into the chair until and unless it is ABSOLUTELY necessary. And I am so sorry that it is for so many people.

Especially when we get over 45, 55..yuck etc.
How many after going into the chair have hypertension..heart attacks..blood clots..insane cholesterol levels? Why not do a study in that area?
Then maybe more money would be devoted so those that can't afford to go swimming..and get standing frames and those FES bikes and any other way to stay moving could be stayed moving.

BTW when is your shrink appointment? Hey you got the Prozac already. Not funny really. Who is teaching these newage wonder docs anyway?

I tore the script up in the car. But I will be posting a paper I asked a bone specialist about at a recent symposium hosted by Johns Hopkins for the non-trauma community. When I did need tested for blood flow to my lower legs the normal test comes back false negative (I hope anyway) because excess tone shoves blood through the arteries. Many of us who are incomplete often feel a lot more tone or spacticity than a doctor sees. So they go by the cuff readings on the ankles. In my case the doc was young and confused. He took the stehoscope off and turned on the speaker. I could identify for him the tone signal change from a test for a DVT I once had.

There are some tests I've seen done about the effect arm bikes have on cholesterol but I've never checked the results. Once I scan the other paper in I'll add how to help keep bones healthy and then look up what the tests showed, if anything.

Many European docs tend to think Americans are wimps or hypochondriacs. Considering the number of kids with sore ears in ERs maybe they are right. But Prozac for chest pain with my history in front of her? Glad they didn't keep her when they moved.

[sachad]

Does this count? When I first became paralyzed, the ER docs thought I was faking it. Even when they were poking me with sharp instruments and I wasn't flinching, I still got asked a whole barrage of questions like .. does your mom or dad hurt you .. anyone die in your family recently .. etc

They thought you were faking? How insanely rude! I doubt they'd do that to a man. How did you react? :zombie:

[sachad]

A few times I've been told that if I accept Jesus into my heart I would be instantly healed. So that makes me mad.

Then once when I asked for more physical therapy my case worker at PMG told me,
"If I was you, I would need more mental therapy than physical therapy."

Great attempt at trying to deny benefits. The famous "If I was you" bothers me sooooooooooooooooo much.

[Lindox]

A few times I've been told that if I accept Jesus into my heart I would be instantly healed. So that makes me mad.

Then once when I asked for more physical therapy my case worker at PMG told me,
"If I was you, I would need more mental therapy than physical therapy."

Great attempt at trying to deny benefits. The famous "If I was you" bothers me sooooooooooooooooo much.

Welcome to the forum sasha.
Sorry about the religious people. I think they mean well.

I have never met a tranverse myelitis victim in person. And do doubt if too many in the general public even know what the word means. Much less what the symptoms are..or what the prognosis can entail.

Good thing for people like Sue getting some knowledge out to the public. Your condition seems to know NO boundaries in race, age, or geographic location.

And the symptoms are so incredibly diverse in presentation. A real medical doozy is what it looks like to me.

Thanks ALL for voting in the poll. Even with the small participation I think I see this a bit more clearly.

[rfbdorf]

I answered yes for my wife, but it was a psychologist to whom she was referred, not a psychoanalyst; she was referred by her pain specialist - not as an alternative to meds or a way to decrease their usage, but as an adjunct to them. The experience has been helpful for her.

These suggestions of faking it that some tell about are beyond my compehension. I can't imagine anyone faking it when it comes to the bowel program & catheter!
Yeah, she's had people who want to lay hands on her & heal her. If only that worked!
- Richard

[Lindox]

I answered yes for my wife, but it was a psychologist to whom she was referred, not a psychoanalyst; she was referred by her pain specialist - not as an alternative to meds or a way to decrease their usage, but as an adjunct to them. The experience has been helpful for her.

These suggestions of faking it that some tell about are beyond my compehension. I can't imagine anyone faking it when it comes to the bowel program & catheter!
Yeah, she's had people who want to lay hands on her & heal her. If only that worked!
- Richard

Richard,
I am not saying that psychological or psychoanalytical help isn't valuable to people.

Just in my individual case..in 55 years of being disabled..no other professional has ever said that this type of care was needed. And I didn't just become stubborn yesterday.

I am seeing this doctor Monday and have a list of questions for HIM. An analysis so to say of his ability to be MY doctor.
We really haven't had a heart to heart since I started seeing him last year. And I have an HMO that has limited providers attached.

If he and I don't come to an understanding..and he insists upon his opinions..I will have to change providers even if that means paying for it completely out of pocket. If he insists on his analysis recommendation then I will not be seeing a mental provider..but will definately be seeing my attorney.

[Sue Pendleton]

Richard,
I am not saying that psychological or psychoanalytical help isn't valuable to people.

Just in my individual case..in 55 years of being disabled..no other professional has ever said that this type of care was needed. And I didn't just become stubborn yesterday.

I am seeing this doctor Monday and have a list of questions for HIM. An analysis so to say of his ability to be MY doctor.
We really haven't had a heart to heart since I started seeing him last year. And I have an HMO that has limited providers attached.

If he and I don't come to an understanding..and he insists upon his opinions..I will have to change providers even if that means paying for it completely out of pocket. If he insists on his analysis recommendation then I will not be seeing a mental provider..but will definately be seeing my attorney.

Now this sounds like me!:mega: I always ask a new doc a few questions. Like why this field of medicine? Why medicine at all? Schools they attended? For those that it applies to ask if they know what AD is or post-polio syndrome. No, I'm not trying to check for the worst grad in his/her med school. Just I have found that doctors AND nurses that willingly answer these kind of questions without getting defensive are more likely to listen to my ideas and research alternatives if I am not into the "normal" way of dealing with a problem.

I take in a printed sheet with a short medical history back to grandparents because of specific over lapping medical problems. Make sure you include all medical problems unrelated to your disability on this sheet. The normal list of current meds, supplements and why you take them and current living arrangements-home with husband/wife/kids, single with help coming in daily or live in, assisted living, service animal, independent, etc. I also tend to discuss my not so great reactions to most drugs and why I'd prefer other modalities to meds when possible.

Oh, and any specialist should have a list of your other doctors or at the very least your primary care doc and phone numbers to the doc/docs and your pharmacy.

Let us know how it goes Lin. Good luck!

[Liz321]

oops i took the poll by error
I don't have TM

[Lindox]

oops i took the poll by error
I don't have TM

Thanks for taking the poll Liz. It wasn't meant only for TM or atraumatic injuries or diseases.
Interesting that the numbers show more of this type advice given to atraumatic vs. traumatic happenings.

[singin_intherain]

In the years when I felt things changing and being wrong and was pushing about it, but before you could see it, I got that all the time. (Along with “your level of concern doesn’t seem consistent with your condition.”) It’s pretty small victory that now that it’s visible one of the most egregious offenders (especially because I liked him and wanted him to get me) says of me to others “a courageous woman.”

[Lindox]

Now this sounds like me!:mega: I always ask a new doc a few questions. Like why this field of medicine? Why medicine at all? Schools they attended? For those that it applies to ask if they know what AD is or post-polio syndrome. No, I'm not trying to check for the worst grad in his/her med school. Just I have found that doctors AND nurses that willingly answer these kind of questions without getting defensive are more likely to listen to my ideas and research alternatives if I am not into the "normal" way of dealing with a problem.

I take in a printed sheet with a short medical history back to grandparents because of specific over lapping medical problems. Make sure you include all medical problems unrelated to your disability on this sheet. The normal list of current meds, supplements and why you take them and current living arrangements-home with husband/wife/kids, single with help coming in daily or live in, assisted living, service animal, independent, etc. I also tend to discuss my not so great reactions to most drugs and why I'd prefer other modalities to meds when possible.

Oh, and any specialist should have a list of your other doctors or at the very least your primary care doc and phone numbers to the doc/docs and your pharmacy.

Let us know how it goes Lin. Good luck!

Hi Sue,
How are you?
Your advice was very fine indeed. Fortunately I am a pretty healthy overall ole broad. And I attribute much of that health to the use of crutches vs. a chair.

We had a pretty good chat.
My primary care doctor is alright. He is young but a good humored guy and well educated and always searching.
When this PPS started I was sent by my GP that I had since coming to California to a neurologist. That one was WAY out there..and cold as ice. So I went to my ortho I had used since coming here..and he was the best and we really worked together..but unfortunately he died last year..thus referred to this neurologist.

Thus this shrink recommendation..he did fess up that he wasn't all that up on polio or PPS..and got alot of his information from the so called experts. I should have seen the flag with our first encounter.

I hit my head a couple of weeks ago bungie diving on some steps. And this was when he became insistent on the chair. Then the shrink. I had to inform him that
when you use crutches ALL the time..you fall sometimes..then you get back up. You don't throw the crutches away. Shit happens.

This is more an orthopedic problem..always was..always will be. Thus I will find an OLD ortho with a young mind. They don't care if your a little bit crazy.

And don't see any type of help coming from neurology unless they can replace worn out neurons. So a waste of time playing their game. A good ortho doesn't play mind games.

I know this isn't the best advice for others.
And you can delete it if you want.

Thanks for having this forum.

[Sue Pendleton]

Feeling tons better since Maggie became a part of our lives. Still miss my Reggie but Maggie is a trip and so diffferent. Drives us crazy. I love her.

I wish you were on this coast Lindox. Let me do a little searching and if I can't find what I'm looking for I'll call Dr Halsted on Monday and see if he can recommend someone with PPS experience out there. Are you in northern, southern or central CA? Feel free to PM me if you want. Laro Halsted was my team leader while I was in rehab the first time. He has PPS and now mainly does research at NRH in Washington. He had started using a scooter to get around the halls while I was there the first time. Didn't stop him from doing everything he wanted that I could see. Just saved his energy for what he considered important--his family and patients. He contracted polio while wandering through Spain and finished medical school after the worst was over. I'm sure you've seen his books on how to deal with PPS. And some docs will suggest a chair or scooter to save your shoulders. Do ask them why before you jump. A scooter is a much better shoulder saver though so why docs are suggesting chairs I don't get. And scooters, 4 wheel kind, are easy to manuveur, safe, cheaper than most manual fitted chairs and can be easily left as Dr Halsted always did to walk into a patient's room or in your case to go in a mall store area, dog arena or around the house.

I hate to say that until I met Wise and a few others of his ilk (damn few like him) I'd have had to generalize that neurosurgeons do not have personalities and neurologists are geeks without computer skills. None of this applies to any of my extended family! :-) A neurologist might be good to arrange an EMG if you are having any pain to see if it is nerve or ortho generated or overlaps. Obviously I'll try and find a new one for you if needed. But if an ortho is all that you've ever needed than see if your state medical board has a list of docs with PPS experience. A teaching hospital SHOULD be teaching PPS until there is no one left on Earth who has had wild or immunization caused polio. I think the best hospitals issue of US News and World Reports is still on news stands. I'd buy one. That applies to everyone.

And stay a healthy, crazy old broad. I'd hate to be alone.

[darkeyed_daisy]

My best friend was diagnosed with MS 3 years ago. She was told multiple times before that she was faking it and it was all in her head.

She recently got her disability claim approved but only after 3 years and a 3 hour visit with a psychoanalyst. She jokes with me that now not only does she have MS, she is also crazy.....LOL

I felt so bad for her in the past year going through all this and having doctors treat like she was just a mental case that wanted to be sick.

She is now seeing a wonderful group who specialized in MS in Atlanta. Her health and outlook has improved so much with the right meds and treatment.

[Lindox]

Feeling tons better since Maggie became a part of our lives. Still miss my Reggie but Maggie is a trip and so diffferent. Drives us crazy. I love her.

I wish you were on this coast Lindox. Let me do a little searching and if I can't find what I'm looking for I'll call Dr Halsted on Monday and see if he can recommend someone with PPS experience out there. Are you in northern, southern or central CA? Feel free to PM me if you want. Laro Halsted was my team leader while I was in rehab the first time. He has PPS and now mainly does research at NRH in Washington. He had started using a scooter to get around the halls while I was there the first time. Didn't stop him from doing everything he wanted that I could see. Just saved his energy for what he considered important--his family and patients. He contracted polio while wandering through Spain and finished medical school after the worst was over. I'm sure you've seen his books on how to deal with PPS. And some docs will suggest a chair or scooter to save your shoulders. Do ask them why before you jump. A scooter is a much better shoulder saver though so why docs are suggesting chairs I don't get. And scooters, 4 wheel kind, are easy to manuveur, safe, cheaper than most manual fitted chairs and can be easily left as Dr Halsted always did to walk into a patient's room or in your case to go in a mall store area, dog arena or around the house.

I hate to say that until I met Wise and a few others of his ilk (damn few like him) I'd have had to generalize that neurosurgeons do not have personalities and neurologists are geeks without computer skills. None of this applies to any of my extended family! :-) A neurologist might be good to arrange an EMG if you are having any pain to see if it is nerve or ortho generated or overlaps. Obviously I'll try and find a new one for you if needed. But if an ortho is all that you've ever needed than see if your state medical board has a list of docs with PPS experience. A teaching hospital SHOULD be teaching PPS until there is no one left on Earth who has had wild or immunization caused polio. I think the best hospitals issue of US News and World Reports is still on news stands. I'd buy one. That applies to everyone.

And stay a healthy, crazy old broad. I'd hate to be alone.

Sue,
A good ortho has no problem doing EMG's and they do understand the muscular system.
I expect them to be the first to utilize stem cells in rejuvenating worn out joints.

A scooter would be very nice..but that is the problem.
Too nice. Too easy. And thus we end up using them as many have to our own detriment.

Sitting too much with so much metal and bones feeling like they are going to pop out of your skin is not what I am going to do.

Walking on crutches is my only alternative and it also keeps your tits from getting saggy.

After so many decades of crutch use..what do you think will happen to the good musculature that also developes right along with the tired out joints if you don't use them at least 3/4 of the time you are used to using them? We are talking very good musculature in the unaffected muscles. And swimming keeps them toned..but they will atrophy..and lifting weights etc. is not any better on the joints. This is WHAT the neurologist doesn't understand. My ortho understood quite well..and even Halstead may not understand. He went from no aids to a scooter. He didn't have the same musculature.
And he didn't have 15 reconstructive type surgeries.

THUS a good ortho. Because I still CAN walk on crutches..but will still fall once in awhile more due to liter and not being 100% focused on the crap laying on the ground.

Thanks for all your advice though.
As with every condition no two people are the same.

[Sue Pendleton]

I get ya. Halsted did use foot orthotics before the scooter. I don't know if he ever used anything else.

I do see your point on keeping the muscles you do have. As long as your shoulders aren't screaming than I agree a good ortho is probably all you need. Did you try the CA medical association? I'll go back through my sources tomorrow for an ortho only. I guess the older or youngest would be best, eh?

And does my butt understand the thought of going from standing to sitting before absolutely necessary. That is one place I wish I didn't have feeling. Pointy, wirey joints indeed!