Caring Doctors - something to make you smile (And a 'me' update)

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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 8/18/2011 3:23 AM (GMT -6)   
I had to see my GI specialist yesterday - just for my four-monthly review. I've got a pretty close relationship with him because he's been with me through life-threatening illness. He really made me smile yesterday and I wanted to share with you all because it's a reminder of what a wonderful doctor really is.

I'm looking awful at the moment because of pain and exhaustion, but in terms of my weight I'm doing well. I've lost a little bit, but not enough that we have to worry. I spent time in hospital in late '09 on a feeding tube because my weight dropped to just 60lb, and I happened to mention to him that I found a photo we took of me early last year, a few months after I'd come out of hospital. I said that I had taken one look at it and cried because looking back I couldn't believe how bad I'd been, especially as this was after months of enteral nutrition and having put a fair amount of weight on (this is the photo)

He got a bit emotional himself, and told me that even he hadn't expected me to survive, that he'd never had a patient so critically ill pull through before. Then he told me how proud he was of me and how proud I should be of myself - of my courage, my strength and determination. He told me how inspiring it was that I'd fought my way back from the brink, been through so much (he used an expletive) and could still have a reasonably good outlook about everything. And I thought - WOW. Firstly that he cares that much and isn't afraid to show it, but how nice to think that others - and especially a doctor - feel that way about me :)

I've had some other -possible- good news too. My PM doctor has been talking with a doctor in the UK about IVIG for my CRPS (a fairly new treatment idea with respect to CRPS), and feels that with the material he's been given we have a good case for talking to the blood bank here and attempting to get some for me to try.

Other news isn't so good . I had to have a pulmonary angiogram on Tuesday because I was getting a lot of extra chest pain and my GP wanted to rule out PE. No clot, but the CT showed up another six vertebral fractures that weren't apparent on the x-rays :( Getting a heap of severe nerve pain through my back, chest and legs with it too, and I suspect that the injury is encouraging the CRPS to creep further. Sigh

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 8/18/2011 7:51 AM (GMT -6)   
Oh Laura,

I don't know whether to say I'm sorry or congratulations. It is so difficult to weigh the positives and the negatives. I will be happy for you for your good news and hope for more positive things.

All my best.
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 8/18/2011 8:54 AM (GMT -6)   
 
      Laura!...you are one tough young lady! I had not realized all that you have been through! shocked
 
          I'm happy that your DR is as personable as he is with you. My wife and I have a Dr like that as well, and it sure makes a difference, knowing that they will take the extra time,... to make one feel like they really care.
 
      Were sorry to hear about the extra fractures, and then to have CRPS affected by it, must be a real worry for you.
 
        Thanks for the photo, and now I can put a face with the name! wink
 
       Gongrats on the wonderful relationship you have with your Dr....and we will pray that your other health problems will stabilize soon.
 
     Take care,
 
 SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

NiNi53
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Date Joined Mar 2011
Total Posts : 816
   Posted 8/18/2011 4:54 PM (GMT -6)   
Hi Laura, I want to let you know that you are an inspiration to me as well as others I am sure.  I have spoken before about your bravery.  Sometimes it makes me ashamed to crumble about my issues.
 
How very fortunate you are to have a doctor who takes such good care of you, and also cares so much for you.  I am sure he tells others of how hard you have fought to keep on keeping on.  You are very blessed to have such a doctor.  It is a shame that there seems to be less doctors with your doctors compassion for his patients then there are doctors who want to rush you out of there offices, to continue to make more money by seeing as many people as they can, writing the scripts and out you go.  Its sort of a constant rotation of patient after patient who may spend oh maybe 5-10 minutes with a patient.
 
You just keep on fighting and with the help of your doctor, you should do well.  Thank you for being an inspiration to myself and others.
 
Take care and hope you are feeling well.
 
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

NiNi53
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Date Joined Mar 2011
Total Posts : 816
   Posted 8/18/2011 4:56 PM (GMT -6)   
One more thing, I looked at the picture, you are beautiful inside and out.
 
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 8/18/2011 8:18 PM (GMT -6)   
Thanks Kathy :) Thankfully I DON'T look like that anymore! Here is a much healthier (and happier) one for comparison!

SE - I can't remember if I put a lot of that part of my 'history' in my intro post, because when I joined I was looking for information on the SCS leads coming up to my surgery. Might as well tell it here...

In late '07 I started getting a lot of nausea, lost a bit of weight, but just put it down to everything going on around me. My CRPS was 'just' in my right leg, but quite bad, I was sitting my finals in vet school, lots of stress... Early '08 it went from nausea to a bit of vomiting, then a lot of vomiting.
 
I ended up in hospital dehydrated and with my potassium at dangerously low levels, and my GP sent me to a GI specialist. Did all the routine stuff, scans, scopes, then a gastric emptying study. For the study I had, 'normal' meant that 70% or more of the tracer should have left the stomach after 90 minutes. My result was 20% shocked

I can't tolerate metoclopramide - I found that out the hard way after being given it by my local doctor one day and nearly driving into a tree on my way home from the clinic, so that was out as any sort of management tool. The GI guys here don't like using it anyway because of the potential of long term side effects. We tried domperidone, but in very rare cases it can alter hormone levels and trigger a lactation cycle.
 
 I was one of those very rare cases, and even on a minuscule dose I started running milk blush Throughout all this, I had a wonderful dietitian who was digging out every nutritional supplement she could find for me, but all were causing me to bloat, to vomit and not helping me to put any weigh on - or even to maintain my weight. In the end we worked out that it was because almost all contain either lactose or fructose, and I wasn't tolerating either.
 
I don't tolerate wheat very well either, and my stomach couldn't even cope with rice by that stage. I was surviving on runny porridge and sugar for extra energy, and of course my weight kept dropping. My parents, GP, specialist, kept pushing me to go into hospital for treatment, but I was absolutely terrified of hospitals at that time and I'd kind of had enough of treatment, was so sick and depressed that I really didn't want to deal with anything else - especially as most people other than my parents and MY doctors were taking one look at me and diagnosing me with anorexia nervosa, accusing me of starving myself, etc.

As I got worse, my GI doc put in an authority request for Cisapride, which is a heavily restricted drug here. I had to have the full gamut of cardiac assessment - ECG, echo, holter testing, etc., and in all this, we found that I had a prolonged QT interval, and a resting heart rate that at that time rarely fell below about 120bpm shocked
Despite all that, he somehow managed after a few months of hassling to get authority for a drug trial - had to have it done in hospital - but it changed my ECG dangerously and we had to stop it. It was by this time that I was down to the 60lb in weight. I was so weak that before going into hospital I was sleeping on the couch because I was too weak to get into bed.
 
My body temperature was sitting at about 34-35C, my HR at below 40bpm. For myself, I would happily have died at that time because I was so sick, in so much pain and so over it that I didn't care anymore, but knew I couldn't do that to my family so agreed to have a naso-jejunal tube placed. Can't remember now how long I spent in hospital - weeks and weeks and weeks - on enteral feeding, rehydrating, stabilising my heart issues, electrolytes etc.
 
 I barely remember my time there, save being interrogated by a 'gaggle' of psychiatrists (they reminded me of geese - a little team of them waddled in one behind the other) because yet another person had decided that I was obviously anorexic. Looking back it is amazing that I survived - I was so sick that nobody expected me to sad
 
 
 
    Laure I split your post here up a little more, as I want all members to be able to read it! It is an amazing story, and I don't know how you got through it all. Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 8/19/2011 7:41:30 AM (GMT-6)


momtofourangels
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Date Joined Apr 2010
Total Posts : 2265
   Posted 8/18/2011 10:08 PM (GMT -6)   
Wow Laura You're a walking miracle. I'm so sorry that you had to go thru so much. I wish you luck with getting to do the IVIG. What is IVIG? I'm sorry.

It's so great that you have such a caring doctor. That must make you feel really good.

I'm so sorry also that you have more vertebral fracturesa that are in turn causing more pain and the CRPS to get more involved. shakehead Do you know what is causing you to have more fractures in your spine?

I sure hope that you can get better rest than you have been getting. You take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 8/19/2011 8:48 AM (GMT -6)   
 
       so..Laura!....after reading your story here...what was the final diagnoses? Gastroparesis?
 
          Again, Bless your little heart! I also see that you suffer from Dystonia....did you try the Botox for it? I'm learning here, so I'm guessing Cervical Dystonia right? One of our newer members here suffers from this, so I did a little research on it.
 
   SE wink
   
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 8/19/2011 10:32 AM (GMT -6)   
Yep, gastroparesis. My doctors believe it may be an autonomic problem linked to my CRPS, particularly as I also have other autonomic issues - with my heart rate, blood pressure, etc.

My dystonia is another 'bonus' of having CRPS - mine affects my lower legs, ankles and feet and is the main reason why I am mostly reliant on a wheelchair. In my case it's caused something called equinovarus deformity, which means that my feet have twisted inwards and under...do you know what a club foot looks like? When I walk with crutches, I'm taking my weight on the outsides of my feet. In acute spasm as well, I can't walk because it means weight bearing on the tops of my feet. It means I've got bone spurs and bursitis in odd places, I've had big abscesses in my feet, lots of stress on joints...

Had lots of therapy for it. Oral muscle relaxants, PT, serial casting, splinting, Botox. As far as the Botox goes, we actually think that my body reacts either to the Botox itself or to something in the carrier. I've also had it injected into my stomach because it's a gastroparesis treatment as well, and had extreme pain reactions each time. Now it's managed as best we can with high dose intrathecal baclofen and PT. it's not ideal - it's improved my mobility a little, but the main thing for me is that it's made me a lot more comfortable.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 8/19/2011 10:41 AM (GMT -6)   
Oh and Loretta - IVIG is IV immunoglobulin, a plasma product usually used for autoimmune type conditions. It's being investigated as a possible CRPS treatment at present after it was used to treat a patient with an autoimmune disease and CRPS - and the CRPS appeared to improve! Very early days yet, but we can hope.

The fracture - one of the doctors I saw suggested I talk to my GP about a bone density scan, and I think I probably need to. I suspect that my bone density probably isn't great and that that's probably why.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 8/19/2011 10:43 AM (GMT -6)   
 
      ...I didn't realize Dystonia affected the legs as well?...I saw where it can affect the arms and hands...and did not read far enough on it I guess. Can you point me to some research on it, so I can look it up? I would appreciate it! wink
 
      SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 8/19/2011 12:47 PM (GMT -6)   
Hi Laura, its Kathy again, and yes I will admit you look even more beautiful without the nose ring,lol.  I hope you dont think for a minute I am in any way trying to be funny as in not take seriously what you have gone through and what you continue to go through, but sometimes humor is all thats left and sometimes it helps.
 
I cant even imagine going where you have gone.  I think perhaps you are superwoman.   Soon you superpowers will make themselves know and off you can go to save everyone else who has suffered as you have.
 
Again with the doctors who thought you anorxeic, really did they really think you would try to feel that bad.  See its goes back to if they dont know, you are dismissed as crazy, hypocondriac, anorexic, and various other mental issues instead of listening to you.  I mean really listening to the patient.  Oh, somehow I dont think that will change.
 
I am so grateful that you found doctors who didnt dismiss you, who listened to you, who have gone so very far with treating you with dignity and mutual trust.  For that my love you are truly blessed.
 
Ok, will continue praying for you, you continue fighting, I think you are up there with the great Muhammad Ali, as a fighter.
 
Take care, Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16793
   Posted 8/19/2011 1:09 PM (GMT -6)   
Hi Laura, wow, what a story indeed. Yes, you have been there and back it sounds like. I too, have the most wonderful gastro taking care of me. I have been with him 9 years this October and the man pretty much did save my life too. He treats me for crohns and ulcerative colitis, I am fortunate to have both. I live in a large city with hundreds and hundreds of gastro and I drive 30 miles to a small town to see him. He has been there thru some really bad times with me and never gave up. Everyone in that town knows who he is and if they are not a patient of his they all love him any way.

I have a very good friend with gastroparesis and she nearly died from it because she was not able to digest her food and it sat there and rotted in her stomach. She has an SCS unit implanted that takes care of that problem and she does well.

I do hope that you are able to get to try the new medication. Please keep us posted on how this comes along. Take care.
Moderator Chronic Pain Forum

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 8/19/2011 6:06 PM (GMT -6)   
Oh gosh Stray, that's shocking :( I guess I'm 'lucky' in a way, in that I tend to vomit most of my undigested food. It's a pretty horrible thing (especially when it comes up six hours later looking like it did when I swallowed it rolleyes) but I'd rather that than something like what your friend went through. I'm glad she's doing well now.

SE - I've just done a bit of searching and other than general information on focal dystonias, I can't find too much on dystonia affecting the legs. It's relatively common with CRPS though - from memory I think something like 25% of CRPS patients develop some degree of dystonia. I'll have another look later and see what I can find for you :-)

Laura

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 8/19/2011 8:08 PM (GMT -6)   
Wow, that's quite the story Laura. You definitely are a fighter and a very strong and courageous woman.
I really hope the IVIG works for you. I know how terribly you suffer.
My prayers are with you.

Hugs
Suzane

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 8/19/2011 9:14 PM (GMT -6)   
Thank you Laura for explaining what the IVIG is. I appreciate it. I really hope that you get to try it and that it helps you. Take care. I'm still praying for you.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion
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