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Old 07-15-2011, 06:14 PM   #1
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Another Dose of Confusion

Well I went to the specialist today. He is going to start me on medication to help with the mirgranes and my hand tremor. I hope it works.
I asked him in detail about the pain in my hip, knee and foot. When I started walking every day as means of exercise the pain at night became very bad and I could not sleep all night. I told him when I stopped walking the pain has subsided. It does not hurt during the day only at night when I go to bed. He said its my back a disc problem. I said again that I have had this exact pain the very same pain, it is the same dam pain I have had since the day of my stroke. Hip, knee and foot ( drop foot remember ) but still he swears it is a disc in my back. This is all new to me. I am once again cerfubled and confused . Came away with no solution but a new label on it. I wanted medication to help with the pain so I could keep walking and eventually become strong enough that I would not need the medication. But I got nothing.
My question; I have read many posts and talked to many of you about the hip pain and stroke nerve pain. It seems many people who have had a stroke suffer from this. Or did I make that up !!!!!!!!
Some of you reading this post are suffering from nerve pain in the shoulder or arm or leg or one side of the body. I too have the same pain since the stroke why is it today we called it a disc problem. Didnt even put his hands on me. No exray no ct scan, no proof, just its a disc problem.
Im going to start walking again and I dont care if I am up all night, to hell with it I will sleep when I can. Does anyone else think this is a little odd, strange, bazar. I could think of many more words to describe it but I think that is enough. Im frustrated, and very disappointed. So its nice to know some things never change, this is usually how I feel after a doctors appointment.
Your imput would be greatly appreciated
God Bless Mulchie

 
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Old 07-16-2011, 04:04 AM   #2
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Re: Another Dose of Confusion

G’Day mate,
Have you tried another doctor, it seems to me if it was “disc” related, the pain would be with you both day and night , not just when you want to sleep at night. Does it ache during the day if you lay down? I am by no means a doctor by any stretch of the imagination, and would strongly suggest a second option or even a third.

I can only imagination the pain and discomfort you are experiencing, fortunately I don’t have nerve pain caused by my stroke, but I do suffer serve numbness, swelling and the sensation of heaviness down the right side of my entire body, and the dreaded foot drop. To date I still have no prognoses for my condition.

I know how you feel, when after leaving the doctors you are no more informed than before the consultation. If any thing you are just that little bit more “confused.” So you may take a bit of comfort, in the fact your not the only one that feels this way after a doctors visit.

Nothing surprises when it comes to conditions brought on by strokes, you just have to do what you can to get by and keep a positive at look on life.
No matter how hard it seems, sometimes it’s the only thing we have. Please keep us up to date with your progress.

All the best
George

Last edited by goingtorun; 07-16-2011 at 04:05 AM.

 
Old 07-16-2011, 06:05 AM   #3
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Re: Another Dose of Confusion

Thank you George:
This doctor is my second opinion. Go figure!!
I agree with your idea that if it was a disc I would be in pain all the time or experience pain during th eday not just when I lay down. Sure I have pain during the day and I can hardly walk some days from the right side but The proof is, I got this pain the second day of stroke. And that blasted drop foot how can that pain be from a disc. OH you are right the confusion of it all I know Im not alone. And that is a shame. Thanks again George for your kind words. I will be starting to walk again this week. My husband has agreed with me that we will try again. I will keep you posted.
God Bless Mulchie

 
Old 07-16-2011, 06:35 PM   #4
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Re: Another Dose of Confusion

HI Mulchie,
I agree that having a "disc" problem without an MRI or any type of exam like that does seem odd to me. Usually they don't tell you you have a disc problem without a lot of tests. I too have my shoulder pain only at night in bed since my stroke. So it really makes not sense. I have sort of just dealt with it and chalk it up to another stroke symptom with real reason. I am sorry it really doesn't help the pain, but it maybe it helps you to know that you are not crazy and you know that there is another stroke survivor out there that is dealing with a similar situation. I personally am on my 3rd doctor now. I like this guy. He doesn't really have any answers for me either, but he does seem to have more empathy than any one yet. I have been dealing with this stuff for so long now that empathy is about all I will get and I will take it and be happy with that. Maybe your 3rd one will be the charm like mine was. Who knows any more
I sure don't. I hope something of this rambling might have helped. If not, please ignore it and try to have a good day anyway.

God Bless,
Tim

 
Old 07-16-2011, 07:10 PM   #5
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Re: Another Dose of Confusion

hi again Mulchie, I still think most of your pain is caused by the drop foot. the way the foot turns in and ubder puts a lot of strain on the tendons and muscles all way up your leg/knee and hip. that's why it feels so much better with the brace on? my wife has had 9 back operations on discs and such, her pain is constant day and night. just know that we all are trying to help you! I also suggest you have your nrurologist test you for PTSD I didn't sleep right for years after my stroke. my doctors always tried to say it was caused by depression and gave me medication for that, it wasn't untill my neurologist told me I suffered from PTSD, and gave me medication for that, that I began sleeping well through the night. now I'll sleep as much as 12 hours a night and never nap during the day, unless I'm riding in a car! riding I can't stay awake!

also, have you reied wearing a brace to bed? a pharmacy carries some nice soft ones for under $10.00. that will allow you to get up and walk at night if needed for restroom? keeping the foot in normal position might help with might pain, iy's worth a try

I hope this helps some? nut don't give up walking and trying to get stronger!

good luck and god bless.

Larry/coupe
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Old 07-17-2011, 06:28 AM   #6
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Re: Another Dose of Confusion

It is not rambling by any means. Its a kind ear and a helpful heart and I thank you Tim. Your shoulder pain is the same pain I am dealing with in my hip, knee and foot. I know its from the stroke because I have had it since that terrible day when I got my stroke. But these guys with the big letters after their names get to pull the diagnosis out of their you know what and call it the truth. Well I dont think so. I agree with you. There needs to be some substancial investigating before you make that type of claim. Unless your God. Today is a down day, and Im sure that visit had something to do with it. Fed up, mad, disappointed once again, wronged by the medical profession, and no answers to my questions. I feel a deep comfort knowing I am not alone. I know many people on this board are battling the same ignorant neglect. You are on your third doc what does that tell us. Im so sorry about that and I hope this doctor continues to have the kindest of care for you. It is the least he could do for you. You deserve nothing but the best of kindness and best of care. I had one doctor tell me he was so sorry that I had a stroke. It was the only kind words anyone has spoken to me in all the medical personal I have seen since my stroke. The medical profession use to be a carring, loving and healing profession. Now that I need them I have yet to receive that care.
It is another day. What shall we do with it?
Thank you Tim
God Bless Mulchie

 
Old 07-17-2011, 06:40 AM   #7
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Re: Another Dose of Confusion

And a Nut I am
Larry thank you. That Idea about a brace to bed at night MY GOSH why did I not think of that. That is a great idea. I am also going to make sure I wear my brace when I do my walks. The doc suggested no but I remember you telling me I should. What a great idea about the brace. This week the nut is going to start walking again!!!
Thank you for sharing about your wife's disc I am so very sorry for the pain she is suffering. It confirms what I have been also thinking about the pain being all day and night not just at nght. Larry what is PTSD? I sleep really really well at night untill disterbed by this dam stroke pain. It is a pain like no other and never came untill the day after my stroke. I also agree with you that darn drop foot I think is responsible for alot. It has a mind of its own for sure. Larry do you think Physio can ever correct the drop foot? Or is it that part of the brain just not willing to let it go. Im confused on that. I know you had the operation so Im assuming you tried physio and it did not work am I right?
thank you Larry for your kind advice. I am going to try and find a brace for at night time and please tell me what ptsd is?? thanks God Bless Mulchie

Last edited by Mulchie; 07-17-2011 at 10:00 AM.

 
Old 07-17-2011, 10:01 AM   #8
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Re: Another Dose of Confusion

hello again Mulchie, PTSD is, Post Traumatic Stress Disorder. after my doctor diagnosed me with that, I researched it and every symptom fit me to a tee. the Medication he gave me for it, I can't spell and I'm at the cabin now, the bottle is home. spell checker doesn't recognize it or offer any suggestions on spelling? but it sure worked for me! yes that drop foot causes many problems, it turns and twists into contortions that's impossible to duplicate with the foot you have complete control over. in bed, even the lightest bed sheet as covers seems to be so heavy it pushes the foot even more! I wouldn't suggest trying to wear the hard plastic brace at night, as when you lay on your side it hurts like the dickens on your ankle bones. ********'s or Happy Harry's carry a soft velcro one for about $10.00 that doesn't hurt too bad. I always slip it over my toes, back to the ball of my foot then set my foot on the floor, and push it so my foot is back more, before fastening the velcro strap behind my calf but not enough to cause pain above my heel, just a goos stretch all night long. I can't sleep on my back as I get choked. I can't sleep on my belly, in fact I can't even roll onto my belly at all. I mostly sleep on my right side unless/until I get a bad pain in my left affected arm? laying on my left side usually makes that go away pretty quickly the brace doesn't hurt my ankle on either side. it is a little cumbersome trying to move my foot around under covers, I figure I'm extending more use of my entire leg when doing it, should make entire leg stronger?

try the brace, keep up the walking, let the "nut" out of it's shell!

Analize-Accept-Adapt

good luck and god bless

Larry/coupe
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Old 07-17-2011, 12:22 PM   #9
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Re: Another Dose of Confusion

Thanks for the name of that brace. I will be on the hunt for one. I really think that may be the answer. It is certainly worth a try. I will be starting my walking again this week.
You know Larry since Tim told me about your Accept ,Analyze , Adapt I typed those three words out in big print and taped them to my wall beside my computer. I see them every day. I think they are three powerful words for stroke survivors.
The PTSD has also given me somthing to think about. I think that I sleep well but truth be told I wake up frequently. Maybe that is what I need to focus on too. It might help my exhaustion. And OH boy do I have exhaustion. They say it is the last to go in stroke symptoms. Well I am ready for it to go but after a year Im wondering is it going to go or do I just adjust to it. Hummmm another question for our negelectful medical team. Im sure if I was sleeping soundly like you said it would certainly help. So I will be looking into that too. Thanks!!
Hope your enjoying the cabin.
And just to let you know, the NUT has always been out of the shell. hehehehe!!
God Bless Mulchie

 
Old 07-18-2011, 02:49 PM   #10
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Re: Another Dose of Confusion

What sort of nut doctor diagnoses a disc problem without even running a test? And you saw two of these quacks? Crazyness.

I'm with The Cynic - go for Number 3.

 
Old 07-18-2011, 06:44 PM   #11
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Re: Another Dose of Confusion

hi again Mulchie, you said "Larry do you think Physio can ever correct the drop foot? Or is it that part of the brain just not willing to let it go. Im confused on that. I know you had the operation so Im assuming you tried physio and it did not work am I right?" believe me! in my 18 2/2+ years, I've had hundreds or thousands of hours in physio! I've also had hundreds of hours of bio-feedback, I can control most of my pains using that. I can lower my heartrate to about 68 beats per minute, I can lower my blood pressure though I've no problem with that at all, can also lower my breathing rate to about 28 breaths per minute breathing fully and normaly. I've also tried Botox shots and Phenol shots to no avail, I'd bet I've spent $25-$30,000 in shots in my years! drop foot, is something that just can't be controled? even serial casting for 8 weeks at a time, only hurts and when the casts come off the foot goes right back. the surgery was the only solution I had left. and I'm glad I did it only wish i'd did it sooner and had my tendons tightened more, bringing my foot up more.

i don't know that it's the brain that just wont let go? I think it's the tendons are stuck in a shortened position? the surgery adds length to the tendons while tricking the brain into thinking it's still holding the tendons at the same place? which it is? only a piece has been added.

I'll give you my thery on stroke recovery, which is only my opinion.! most, if not all? stroke survivors, hope they can go back and pick up the pieces and be whole again. all the pieces can't be found and if were? there's no majical glue to put them back together! at the time of stroke, a piece of the brain dies, there is no cure for death! if there was we'd all live forever. what we can and must do is, take the pieces of our brains that are alive and train them differently the parts that work, work correctly? we've had to train our brains since birth, why stop now? I've studied karate for 35 years, and played guitar fr 35 years, I know karate moves and guitar chords take at least 2000 practices to become instinctive! it's no different frome using our brain? going from one position to another thakes thought and brain training to become an instinct. not trying to say it will ever be that we don't have to think about moving first before the brain helps us. watch a newborn baby a while, babies do not blink their eyes, nobody is going to win a stare down contest with a baby! they only blink when they need to? as we grow we blink automaticaly. we don't need to think about doing it, nor can we stop it from happening! we must take our working arts and build them, that's how I came up with my Analize Accept Adapt menue. I know if I want to open a bottle of water, I can't hold it in my left hand and twist the cap with my right. I must hold it between my legs. I know when I walk, if I don't stretch my left affected foot so it holds a second before I step forward with it my toes will drag the floor and trip me. didn't take a lot of falls to figure that out. I've only fallen 5 times in 18 1/2+ years.

I may never get all the pieces back in line? but, I'm happy I have a few good pieces left that allow me to figure things out when possible. I may be wrong about it all? but it's how my brain works now.

so I don't bore everyone with my long posts ? I'll stop here. I wish you all the best and love you all

good luck and god bless

Larry/coupe

ps. sorry my spell check isn't working please forgive mistakes!
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Old 07-19-2011, 07:03 AM   #12
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Re: Another Dose of Confusion

Hi Larry
That answers my question about the drop foot.
Finding a treatment or advice about what works can only come from those who have experienced it themselves, because the medical field seems to be a tradgic disappointment.
Accepting is the first stept isnt it. Because until your ready to accept what has happened you really cant move forward. I keep thinking I have accepted it but then I have these days when I convience myself I can get my old self back. Then I get myself introuble and usually as Tim puts it those are my steps backwards.
I think my biggest fear is not what disability or limitations I will be left with. My biggest fear is how long will it take me to accept the fact that It is what it is and begin to move forward and stop morning my old life. Stop missing the old me. My biggest fear is how long does it take before you just say enough and leave it all behind. Accept the fact that its ok that the puzzle is missing a few pieces the picture looks ok anyway.
Thanks for the great advice it does not fall on deaf ears. My heart thanks you.

Hope you have a great day
God Bless Mulchie

 
Old 07-19-2011, 12:12 PM   #13
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Re: Another Dose of Confusion

hi again Mulchie, yes acceptance i the first step in my opinion. I on't think even after accepting, you can forget your old self, you never stop mourning the losses you have, you must learn to love your new self, just as you did the old. which if like most? could've used some improvement in areas too. none of us were/will be perfect! we have to take the good pieces and work very hard to make them better. sure we will have our miss myself days, it's part of life! my stroke took many things away from me,my wife,my friends, and my family. it did not take away my dignity, my integrity, my hopes and dreams, nor my attitude or personality. it didn't take my humor or self worth, though the self worth took a long time to find again! on the other hand, my stroke gave me things I'd never ha before. a deeper appreciation for the smaller thing in life, the ability to be more giving and caring to others, I have regaied more confidence in myself after overcoming as much as I have. I've accepted my situation and love myself for who and what I've become. I may never be what I once was? I can live with that, and the knowlege that until another event or something else I won't get any worse? I still get frustrated I still get tired. but I do the best I can. that's all we can expect from ourselves nor can you!1

do your best. your time will come, even though some things may never go away? a stroke takes a drastic toll on our emotional state, some of us find it harder to beat it. but we all must find a way to keep it from beating us!

good luck and god bless

Larry/coupe
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