Anyone have experience with mixed diagnosis or no diagnosis for illness?

[Tap]

A little back story.

 

Around May1st I started having fairly severe lower back pain, both muscular and sciatica. I also had some hip pain but I am used to the hip pain as I have had it for 10 years. The hip pain was diagnosed years ago as basicly 'boney deposits in the hip joint'. I manage the pain so nothing has been done about it in 10 years. I recently got an Xray and MRI of the hip-both show it is clear, and the new doctors say the diagnosis was wrong. The lower back/siatica pain was bad, got worse, now is a little less than bad-but not good.

 

One doctor (a specialist in hips) says I have bursitis in the hip. The other doctor (a physiatrist [http://www.aapmr.org/condtreat/what.htm] -in the same practice) says the bursitis diagnosis is wrong, but he doesn't know what it is.

 

The Radiologist says I have protruding disks causing the back/sciatic pain. The physiatrist, says while they are protruding, they are mild, and not touching the nerve, so they aren't causing the nerve pain. The physiatrist says maybe it is a 'fragment' in there touching the nerve periodically, but says it shouldn't be, but it is maybe possible. :lol:

 

 

I am going to another physiatrist on Monday, to get another opinion.

 

They want me to go the physical therapy. I will try it, but don't really know how I feel about that since they don't really know what they are treating!

 

 

What do you do when you have been misdiagnosed for years, and are getting conflicting answers now, and are being told...hmmm, you look fine, I don't know what is wrong with you. I don't know if I should keep looking for another doctor or just let it go, and try the 'blind' physical therapy, and hope they don't screw me up worse!

[Amber in AUS]

My Dad has had back problems for years and was undiagnosed with ongoing testing for almost 2 years until they found the new back pain he was experiencing was infact a collapsed hip which led to a hip replacement. He has previously had 3 back surgeries so he assumed it was his back again, but it wasn't.

 

My SIL has now had 10 operations on her back and twice now has been admitted for back pain and found it was something else. Once she had a tumor on her kidney which was causing 'masking' pain. The other time she had phenemonia. She has a morphine pump to manage her ongoing pain as her back is soo bad.

 

I would try to find an expert and also look at other things beside the back. I don't doubt your pain and discomfort but sometimes psychological treatment can help (especially if they can't find anything really wrong). I don't think my SIL would have a morphine pump if she delt properly with other issues in her life and sought psychological treatment for pain. Whilst i don't doubt her pain i think there are other ways.

 

I am not trying to offend you or anything, sorry if it comes across that way.

[hi_itsgwen]

I have changing/missed diagnosis a lot in friends who have spent years trying one specialist and docter after another. They have been given one prescription after another, oftentimes with complications between drug interactions, and even had surgeries that were later deemed unnecessary. When they do get a diagnosis, it's often a case of 'we don't know what causes this.'

 

I've started to become skeptical because I've seen this happen a LOT. So I have started working at better understanding my own body, so that I can be a proactive health advocate for myself and my children.

 

Which leads me to this, which may be of interest to you. I was having some hip pain during my last pregnancy, and I though it would pass after I had the baby, but it got worse...to the point of being severe. It would flare up for no reason some times, but it was always worse if I was on my feet too much. It would just hit, and I would almost fall, and the pain was so severe that I was hobbled and couldn't walk for a couple of hours. Then I would still be sore. It felt like my hip bone was rubbing on my hip socket bone to bone.

 

I went to a chiro to be told that my alignment issues were advance, and that one foot was even shorter than the other. He said I needed treatment multiple times a day for a couple of months...which was in the thousands of dollars. Which I couldn't afford.

He told us that he would have to see me that frequently because the muscles are used to my spine being out, and would pull it back out of shape. So I went home to think about it. I'm not discounting chiropracters here, I do believe it would have helped. But we just couldn't afford it at the time.

 

Then I saw a friend of mine at a party, and he is a physical therapist. I mentioned my hip pain, and he told me that the type of pt that his practice does specifically target trains muscles to pull the spine back into alignment. He said that as we age, almost all of us get out of alignment on our right side from favoring and over using our right side: hands, putting our weight on the right leg, etc. It shows up in different ways with different folks, but you get symptoms of nerve compression (pain in hip/knee/back), crooked posture, and even teeth wearing down unevenly.

 

Here is a post where I wrote more about it, and posted links to the site: http://www.welltellme.com/discuss/index.php/topic,22257.0.html

The type of physical therapy is called PRI: Postural Restoration Institute.

The website is pretty technical, but the exercises are easy to do at home. Certain muscles, when tensed, 'trigger' the muscles connected to the spine to pull it back into alignment...and you can actually feel you spine re-adjusting itself. SO neat.

 

He showed me some of the exercises, and did some stretches on my arm/spine, and I have had almost no problems since. And I had episodes weekly where I couldn't even walk before that.

 

So if your insurance co. is going to pay for physical therapy anyway, you may want to check the website for a PRI facility. Aparently, it's a really unique method for treating pain through spinal re-alignment.

 

He told me how I could check to see if I was out of alignment. Just lay down flat on your back with your arms straight out to your sides. Now, bending at your elbows, raise your hands. Relax your shoulders completely. One side at a time, totally relax your arm so that your hand falls forward, toward the floor (toward your feet). If both hands can touch the floor, you're in alignment. If one hand can't go all the way down, you're 'out' on that side. Every time I have that 'twinge' where I can feel my hip starting to get sensative, I've been 'out' on the right side. I can then do some of the exercises and just be more aware of strengthing and using my left side, and it goes away...and I'm back in alignment. Pretty cool! It rarely happens at all now, and I first talked with my friend last Christmas. The recovery for me was very fast.

 

HTH!

[Tap]

My Dad has had back problems for years and was undiagnosed with ongoing testing for almost 2 years until they found the new back pain he was experiencing was infact a collapsed hip which led to a hip replacement. He has previously had 3 back surgeries so he assumed it was his back again, but it wasn't.

 

My SIL has now had 10 operations on her back and twice now has been admitted for back pain and found it was something else. Once she had a tumor on her kidney which was causing 'masking' pain. The other time she had phenemonia. She has a morphine pump to manage her ongoing pain as her back is soo bad.

 

I would try to find an expert and also look at other things beside the back. I don't doubt your pain and discomfort but sometimes psychological treatment can help (especially if they can't find anything really wrong). I don't think my SIL would have a morphine pump if she delt properly with other issues in her life and sought psychological treatment for pain. Whilst i don't doubt her pain i think there are other ways.

 

I am not trying to offend you or anything, sorry if it comes across that way.

 

 

Absolutely not offended! I completely agree that pain can be psychological, but since I am a very happy person, in a stable marriage, with a good family, stable finances, and I don't have a problem speaking my mind....I don't really have anything repressed :-)

 

 

I am really beginning to wonder if this pain is radiating from somewhere other than where they are looking. That is why I am going to yet another physiatrist, as they have a more open minded view of pain.

[Pamela H in Texas]

I'm in a pretty similar situation. My rheumy was willing to write the script for PT. I have been to this PT twice before and really like him and his staff. However, even the PT was unable to pinpoint the exact issue; but he came up with a treatment plan. After 2 sessions, I'm already doing better. My sessions are LONG and the homework takes a little time (though all homework is only once per day except one exercise which is 5 times per day). But if it works, that is all that matters, right?

[Harriet Vane]

I had both hip and knee pain for many years. (I still have knee pain.) I assumed that it was arthritis because I have arthritis in my spine.

 

First of all, your back problems could definitely be related to the disc problems. I have scoliosis, and I have bone spurs in my spine. I have had several specialists tell me, "But that shouldn't account for your pain . . ." I have also known other people with the same experience. The fact is that the specialist hasn't felt it in his own body personally and really doesn't know what it's like. You may find that some physical therapy and chiropractic care will help. (I highly recommend BOTH concurrently--they are MUCH more effective together.)

 

As for the hip and knee pain--when I finally had both x-rays and an MRI both my hips and my knees were clear. There were no apparent problems. Everyone assumed that the two problems were connected. However, my hip pain disappeared when I went on a week long canoe trip. Mind you--I'd had this pain for 5-6 years. I couldn't believe that the pain just literally disappeared. It turns out that the problem was in my trunk, and that paddling the canoe exercised exactly the right set of muscles to fix the problem.

 

My knee problem is different. For some reason the tendons on my outer thigh are very tight, and are pulling my patella too far to the outside. When we tape the patella back into position everything is much better. There is physical therapy to fix this, but I haven't done it with enough consistency to see results.

 

Just some thoughts--I hope my experience can help.

[Renee in NC]

My stepmother did - her experience is different than yours, though. It has been going on for 4 years or so (at least that is how long it has been noticeable.) Pain, UTI's, her legs giving out periodically, confusion and memory loss, unable to control her bowels, etc. She went to PT for the pain, stayed on antibiotics all the time, has numerous tests, etc. None of it found anything, so they recommended psychiatric care (because it must be in her head.)

 

Finally, a diagnosis - she has Multiple Sclerosis! What is CRAZY about it is that it took 3 years for her to be tested. Her mother has MS and her grandmother died from it, so you would think they would've tested for that!

[TravelingChris]

We have that with four out of five family members. My dh is alone in not having anything like that. DS has unknown liver issues that aren't serious now but ? DD 15 has a lot of issues which each is being watched and monitored but some of which may very well be connected and actually one underlying issue since she is either extremely unlucky or is having at least a few co-related issues. We are treating what issues need treating and monitoring others. DD12 has osteoporosis which is a diagnosis but in children, it usually is secondary to something. We have done all the tests for the most common causes of this non-common disease and now we are in the treat it now category and find the cause later. The doctor thinks it could be idiopathic juvenile osteoporosis which would be the best diagnosis since it would go away in a year or so when she reaches puberty. I have an offical diagnosis of Sjogren's but actually have more of a overlap syndrome since I have very specific lupus markers and other issues more like RA. WE treat the main diagnosis the same way we would be treating others except with a few additions like eye drops anyway so that is where I am at.