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Old 10-04-2007, 04:36 AM   #1
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Question Looking for Answers

My husband is 47 years old, he walks like he is 80 because of the pain. He is on vicadin, flexerall, xnax, 4 blood pressure medicines, potassium. His calcium levels are high including ionized. His pth levels are high. His sestamibi scan for parathyroid tumors was negative. In his lifetime he has had encephalitis, meningitis, he has histoplasmosis, has been exposed to asbestos, was a boatswain's mate in the military and worked around several chemicals, was diagnosed with possible lyme disease but nothing was ever done. at night he moans in his sleep with pain and his legs shake constantly. the past two years he has gone downhill fast..he no longer is able to even go to the grocery store with me because the pain is so bad. he has tremors. he has narrowing of the arteries in his heart. the pain that is the greatest concern, other than the bone pain, is his abdomen pain. that is what is getting worse and worse. it is where his liver and pancreas is located. it is getting where the pain medicine is not even touching it.he has had CT scans which were negative. he had his gallbladder out thinking that was the cause of the pain, obviously it wasn't. i am slowly watching my husband fail right before my eyes and no one can seem to put the whole picture together and figure out what is wrong. is there any information or advice out there that can help us? we have been fighting this for several years, but i feel we are running out of time. thanks for your help and advice.

 
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Old 10-04-2007, 02:57 PM   #2
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Re: Looking for Answers

I'm so so sorry this is happening to the both of you, you must feel alone and scared and especially frustrated. I wish I had the answers you seek, but unfortunately I do not.

However a few questions, has he had a bone scan done? Was he ever treated for lyme even if it did not show? What blood tests have they done?


My husband gets Pancreatitis problems due to high triglycerides, maybe ask the doctor about that.


I wish I could be of more help I would find a really good doctor and get your husband a complete workup.

good luck to you.

 
Old 10-05-2007, 04:34 AM   #3
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Re: Looking for Answers

Quote:
Originally Posted by jennifer222;32***50
I'm so so sorry this is happening to the both of you, you must feel alone and scared and especially frustrated. I wish I had the answers you seek, but unfortunately I do not.

thanks, it is hard...

However a few questions, has he had a bone scan done? Was he ever treated for lyme even if it did not show? What blood tests have they done?
No they have never done a bone scan, although I think that would be in order.

No he was never treated for lyme disease, just had the rash. they have done regular blood work, high calcium levels, including ionized ( can be indicative of bone cancer or other cancers) his pth levels go high and back down. He had really high triglycerides on one test but then later it was back to normal.

My husband gets Pancreatitis problems due to high triglycerides, maybe ask the doctor about that.


I wish I could be of more help I would find a really good doctor and get your husband a complete workup.

good luck to you.
thanks so much.

 
Old 10-05-2007, 09:01 AM   #4
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Re: Looking for Answers

has he seen a rheumy doc for at least a huge blood work up?when i was sent to see one,he did like four full pages of blood work on me that tested for anything and everything that could possibly cause the level of inflammation and heat that my knee was creating.it ruled out a ton of possible things for me including things like lyme disease and other processes.this really should be done on him,just to obtain that baseline of tests and rule out or in some things.it is the most comprehensive type bloodwork i ever had done.

has he tried seeing a plain pain management doc or clinic?considering your husbands pain and other issues,seeing a good knowledgable pain doc at a good clinic,really would help him out alot.he realistically should be on some level of longer acting type of narcotic,not dosing and having to play 'catch up" with his pain all day long.this is where a good PM comes in sooo very handy,they mostly use the longer acting type meds in their therepys.they just work soo much better than shorter acting ones.there could be other pain therepies there too that he could try to at least bring his pain down to a more tolerable level.my life was practically over til i found my current pain doc.he has helped so much to at least give me back some quality in my life again.he really needs this level of pain management right now.just some suggestions for you.has he ever seen a good GI doc to do some testing on the pancreas and liver?i hope he can find some answers soon.but in the meantime, his pain needs managing by someone who knows pain.good luck and please keep us posted. FB
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11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 10-05-2007, 12:19 PM   #5
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Re: Looking for Answers

My husband is so scared of getting hooked on pain medication that he is resisting taking any more than he is. He did go to a pain management doctor and they gave him a TINS unit...doesn't really help.

A full blood work panel would be great if we could talk a doctor into doing something like that. They just do bits and pieces. My husband has also had a scope down his throat and otherwise and everything looked fine so they said.

Very frustrating but hopeful for this doctor appointment on Wednesday with the ENT for possible parathyroid tumor(s).

thanks for the advice and would always welcome any new ideas or ways to go.

 
Old 10-05-2007, 01:00 PM   #6
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Re: Looking for Answers

There is a HUGE difference between addiction and dependance to pain meds. Taken as prescribed, there is about a 1% chance of becoming addicted. Please look into this. Your husband should not suffer because he is afraid of getting "hooked." I agree that I would take him to a rheumatologist, and the nearest teaching hospital. Keep up your good work as being a loving a supportive wife. I wish all the best for you both!

 
Old 10-08-2007, 10:37 AM   #7
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Re: Looking for Answers

For what it is worth - go to Johns Hopkins web site and then get an appt. Know of several people that have been helped.
Good Luck!

 
Old 10-08-2007, 02:52 PM   #8
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Re: Looking for Answers

You should check out the lyme message boards. Lots of good info. Ticker lists symptoms and it's a tricky disease. mc

 
Old 10-09-2007, 04:22 AM   #9
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Re: Looking for Answers

thanks for the advice...I will keep that in mind...we go to an ENT Surgeon this Wednesday...so we will see what he has to say. Although, I am not even sure that is who we should be going to see.

Will update later....

 
Old 10-09-2007, 04:24 AM   #10
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Re: Looking for Answers

Quote:
Originally Posted by butrfligirl28 View Post
There is a HUGE difference between addiction and dependance to pain meds. Taken as prescribed, there is about a 1% chance of becoming addicted. Please look into this. Your husband should not suffer because he is afraid of getting "hooked." I agree that I would take him to a rheumatologist, and the nearest teaching hospital. Keep up your good work as being a loving a supportive wife. I wish all the best for you both!
Thanks for the advice...of course we all know...insurance dictates where we go these days...so I will check into going to a teaching hospital if our appointment does not go well this Wednesday...will let everyone know. Thanks again for the support

 
Old 10-09-2007, 07:21 AM   #11
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Re: Looking for Answers

B fly had a great idea.this is where myself(with spinal cord freakiness) and my son(with liver failure in need of Tx)went when we needed BIG help,our local U of MN.lifesavers who really do see the worst of the worst or more obscure types of conditions and are usually on the cutting edge of treatment options.if you happen to live near one,even within a couple hours drive,it may be well worth the drive.really good option to have trust me.

one thing it sounds like your hubby is not actually aware of is that it is much more risky(addiction wise) to be taking short acting narcotics than it is long acting.the LA meds just do not release that full amount at one time like the shorter acting ones that give you the more 'euphoric rush' of contents.he probably would do sooo much better with the longer acting type narcotics for many reasons.and B fly is right,but that actual number of true chronic pain patients is actually around 3%(someone posted the 1% on the pain board but that figure is below the actual amount) that realistically run that risk of addiction.still a very small amount when you consider the rest of the population is alot higher than that.the thing here is he NEEDS help,he is suffering,and he does not have to put himself thru all that when there is help availiable from the right place.he just needs good pain management while trying to figure out just whatthe problems are and then after,depending on just what this issue is.he really does need to at least give this type of doc and the availiable modalities a good try,really.the big point here is that he shouldn't and doesn't have to suffer,which he IS doing now.i do wish you luck and some answers soon,but just try talking to him about his need for better help with knowledgable people who just treat pain.please keep us posted,K? FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 10-09-2007, 08:35 AM   #12
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Re: Looking for Answers

Quote:
Originally Posted by feelbad View Post
B fly had a great idea.this is where myself(with spinal cord freakiness) and my son(with liver failure in need of Tx)went when we needed BIG help,our local U of MN.lifesavers who really do see the worst of the worst or more obscure types of conditions and are usually on the cutting edge of treatment options.if you happen to live near one,even within a couple hours drive,it may be well worth the drive.really good option to have trust me.

one thing it sounds like your hubby is not actually aware of is that it is much more risky(addiction wise) to be taking short acting narcotics than it is long acting.the LA meds just do not release that full amount at one time like the shorter acting ones that give you the more 'euphoric rush' of contents.he probably would do sooo much better with the longer acting type narcotics for many reasons.and B fly is right,but that actual number of true chronic pain patients is actually around 3%(someone posted the 1% on the pain board but that figure is below the actual amount) that realistically run that risk of addiction.still a very small amount when you consider the rest of the population is alot higher than that.the thing here is he NEEDS help,he is suffering,and he does not have to put himself thru all that when there is help availiable from the right place.he just needs good pain management while trying to figure out just whatthe problems are and then after,depending on just what this issue is.he really does need to at least give this type of doc and the availiable modalities a good try,really.the big point here is that he shouldn't and doesn't have to suffer,which he IS doing now.i do wish you luck and some answers soon,but just try talking to him about his need for better help with knowledgable people who just treat pain.please keep us posted,K? FB
Thanks! I appreciate the information and the advice. It is so good to have people who understand what it is that we are going through. I talk with my friends but they really can't understand if they are not going through it. I will update tomorrow afternoon after we see the surgeon.

 
Old 10-11-2007, 04:04 AM   #13
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Re: Looking for Answers

Well we went to an ENT docotor yesterday afternoon. We liked him and it seemed like he listened to us. Of course, he wants to do his own Sestamibi scan on my husband's neck ...he really thinks he has parathyroidism. So my husband goes next Tuesday and then we'll see. Just seems like we don't get anywhere...but we still have hope.

 
Old 10-30-2007, 04:16 AM   #14
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Unhappy Re: Looking for Answers

Quote:
Originally Posted by Gap2007 View Post
Well we went to an ENT docotor yesterday afternoon. We liked him and it seemed like he listened to us. Of course, he wants to do his own Sestamibi scan on my husband's neck ...he really thinks he has parathyroidism. So my husband goes next Tuesday and then we'll see. Just seems like we don't get anywhere...but we still have hope.
Well the results from the scan were inconclusive except for a possible tumor on the right hand side. So the ENT wants to do surgery on the 13th of Nov. with the possibility of having to do exploratory if it is not where he thinks it is. And there is no guarantee that this surgery will help his excruciating abdominal pain in the liver and pancreatic area. If it doens't help then we have to go to a gastroenderologist (?sp) I wish we could go to just one doctor and have them do all the tests and come to a diagnosis. This going to specialist after specialist gets frustrating and quite expensive.

Just needed to vent...it is so hard to watch someone you care about suffer in pain and listen to him moan in pain while he is sleeping...and no one seems to be in too much of a hurry to help!

 
Old 10-30-2007, 01:25 PM   #15
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Re: Looking for Answers

Lots of good suggestions and I hope you can get a definitive answer to your husband's problems. It may very well be multiple unassociated problems as well, kind of muddying up the picture. Hopefully the ENT can start to weed his way throught the issues and start getting things resolved.

As a side note, I see your husband is a veteran; is there a VA facility that he could be treated at, as they have excellent care as well. It might give a different perspective as they see all kinds of exotic health issues from exposures to different toxins/chemicals and environmental issues. Just my
2 cts.

Last edited by inspectormoe; 10-30-2007 at 01:25 PM.

 
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