grannyhotwheels

[monotreme]

Hi Carol.  In case you finish your dinner and go to the forum, I was hoping you could answer a question.  I have read before that you have pain in your back.  I have constant pain although no visible problem on MRI like compressed cord, no stenosis etc.  There was increased uptake at T 12 on a bone scan of the spine, but no lesion seen on a MRI.

My question is this: what does your pain feel like?  I rotate between throbbing, pulsing pain, and for the last two days, feel literally like there is a rodent chewing away at my spine.  Like constantly gnawing at it.  this is different than the "buzzing" sensations I also have gotten.  Do you ever have this kind of pain, feeling like there is something eating  away at you???

It has really ruined my Thanksgiving.  Tylenol and Motrin don't relieve it at all.
Thanks for any help you can give.  Did you ever find relief from your pain??

Craig

[monotreme]

Thanks so much Carol.  I feel the same way about the forum.  Who else (besides my wife, who is a nurse,) would ever be able to understand me?  Have a nice Sunday.
Craig

[grannyhotwheels]

How are you feeling this morning?  I pray that you are some better.

As far as my doctor can tell I fully recovered from my small stroke.  Thank God it was nothing severe.  I personally feel like I have lingering signs of it but I do trust my doctor.  As of right now I'm not having to use the wheelchair.  I am however dependent upon my walker and occasionally my cane around the house.  Of course if I travel any distance I have to have the wheelchair.

You talked about the disease taking over so quickly.  I started having carpel tunnel like symptoms in August of 2004, and by December 2004 I was using a walker for everything.  That was fast.  I felt like the way I was going down hill that I would surely be dead by early spring.  I just thank God that he took over and gave my doctor the right decisions to make in treating me.

I went through a horrible depression, so much so, that my family watched me 24/7.  I got to where I couldn't even bathe myself.  I had to have help for everything.  My husband bathed me, got me dressed, took me to all my doctor appointments, helped me brush my teeth, fixed every meal for me, and anything else you could think of.  

That was the worst of times.  Eventually I got some strength back mainly by medication, and was able to at least take care of my own body.  I still have to have a lot of help on some days.  Other days I will even clean my house.  I never know until I get out of bed what the day will bring.

One thing I have learned through all of this is not to try and carry the load by myself.  I have let God take over my life.  Once I did that, my depression for the most part went away.  I actually became human again.  I take everything in stride.  Sometimes my husband and I will even have a good laugh over something I've said or done.  You have to find humor in life and go with the punches.  This is the life God gave me and even though I go through some rough patches I feel blessed to be alive and have my family.  Most of all I'm blessed to have the Lord leading my life.

One of the greatest blessing I also have is the pleasure of falling into this group of people.  I thank him every day for that.  Without all of you I would be lost in the ability to talk to people who know what I go through.  I also would have never developed such close friendships.  You all give me a reason to get up and actually feel human.  Here I sometimes can help people with my words and also get the help I need with words.  It's a win win situation.  I love you all.

I'll be praying,
Carol

ps. I'm sorry this was so long but for some reason I couldn't stop talking.lol

[monotreme]

Thanks Heather.  I will be waiting for january 29.  Getting my plane tickets today.  The support of you and Carol on this post is very appreciated.
Craig

[Heather3418]

I hope you don't mind me jumping in here.  I really think your best hope for answers will be with Quix's doctor in January.  Too bad, January is so far off.  I wish there was a way to help get you out of pain right now, so you could have some relief until you see the specialist.

I can hardly imagine what you are going through.  If I didn't have pain medication to get me through a least a tolerable level of this horrific pain, I think I might have considered suicide long ago.  And frankly, that really isn't an option...I love life too much.  But...I have to have some relief from my pain.

I searched until I found someone that would listen to my pain complaints.  Fortunately or unfortunately, I have a visible lesions in my spine AND in my brain.  Maybe that's why doctor's do not doubt that I need help.  I have also proved to them over the years, that they can "trust" me when it comes to taking my medication as prescribed and have no worries of addiction.  I even endure relentless pain at least once a year, when I will wean off of my pain medication just to make sure that I am not addicted.  My doctor says I shouldn't do that.

My doctor's also keep a check on my blood chemistry; probably required by law for a patient that has been on pain meds for a long time, to make sure that I have prescribed levels of pain medication in my system.  Not higher!

Because of the illegal use of pain medications in this country, due to people that insist on snorking Oxycodone or the like; it has made it more difficult for people that are in chronic pain, to get the relief they deserve.  Most doctor's are notorious for undertreating chronic pain.  In my opinion, no one should have to live the kind of life you are living without getting relief.  Like you said, those kids of yours needs a father that can function.

Keep searching for answers Craig.  There IS someone that will listen.  It literally tooks years to get a doctor to "hear" my pain, but I kept fighting.  Now I am on a schedule of meds that allows me to continue some quality of life, even though I am still in daily pain.  Now just at a more tolerable level.  Anything stronger would make me into a zombie.  I want to participate in life, not become a casual observer.

My heart goes out to you and of course to anyone, that has to live in agony... I pray that help is on the way.

Heather

[monotreme]

Thanks, Carol.  I have been thinking of your course of illness alot and have gone back  to previous threads.about your pain and the LDN.  I  admire your strength.  it is definitely heaven sent.  I feel so bad that you have so much pain and it is so wierd because I am in pain all the time too.  The one thing I am having a hard time adjusting to is how can a disease act so quickly?  I have been having leg weakness and back pain for the last four years but can a disease like MS act so quickly?  I did have ALOT of fatigue since year 2000 and maybe that is when it all started, I don't know.

But this is so hard for me to accept.  I guess primary progressive MS can act quickly but I am in denial right now I think.  Because I am so afraid of the future.  And I am so hoping Dr. M can help me and actually believe me that I am sick .  I am hoping he will not tell me to wait till I am in a wheelchair.  Quix's recommendation means alot to me, and if he can help her, i think he can help me.  i just have had so many bad doctor appointments.

I had SSEP done on Nov. 15 and they had a horrible time getting a response in my legs.  I am trying to get a copy of the report.  How long have you had symptoms and when did you finally get a diagnosis.  And are you in a wheelchair some of the time from your stroke or the MS?
Thanks for answering my questions.  I am just trying to make sense of everything.
Craig

[grannyhotwheels]

I am so sorry.  I just want to cry for you.  If I where you I would find a doctor that wanted me less debilitated and would help me with pain.  In this world today with so much available to help people we do not need to suffer.  Please seek another doctor, and soon.  I wish you the best and please talk to me anytime.

Those 6 children need a father who can function with a lot less pain.  You need to do this for them as well as yourself.  I wish I could just put my arms around you and cry with you because I have been where you are.  I finally got to where I couldn't take it any more and found someone that would help me.  You can too.

I'll be praying,
Carol

[monotreme]

Thanks Carol.  The neuro in Philadelphia that wants to wait till I am in a wheelchair to help me and  will not give me anything for the pain.   My primary doctor only prescribed me lidocaine patches, which do not help.  My appointment with Quix's doctor in Oregon (Dr. Morrow) is on january 29.  

The doctors really frown on me wanting something for the pain.  They gave me a TENS unit which shocks you but that doesn't help either.  They say wait till I am more debilitated.  However, they are not the one with six children who want a father to be around and instead I am constantly trying to function in pain.

Thanks for your help and prayers.
Craig

[grannyhotwheels]

I really couldn't describe my pain any better than you just did.  I've never quite thought of it like that because it sounds really gross but you are right.  The only thing that seems to keep mine in check for the most part is I take methadone for the long term pain and oxycodone for the break through pain.  Unless I've been on my feet a lot or just flat over did it, this seems to help the most.  There is no way that motrin or tylenol could even come close to helping this type of pain.

I really hope that you will ask your doctor for something stronger because I feel very sorry for you if that's all you have to take for it.  My doctor has told me that where the pain is located (lowest part of spine) that it has to be nerve damage causing the pain.  I do have a very long lesion on my spine but it's in the neck area.  That causes a lot of pain also but the worst part is still in the lower back.

I truely hope that you will get help for your pain and any time you need to talk about it I will be happy to share anything I can with you.

I'll be praying,
Carol