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jimmyjimmy
USA
19 Posts |
 Posted - 01/02/2007 : 05:24:01
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So here is my story as brief as possible:
I was cured of my TMS symptoms, crippling lower back pain, 14 years ago by reading Dr. Sarno's book.
Then I started having back pain four years ago. Just to make sure it was TMS I went to a MD, DR. Schechter, who also understood TMS. He Diagnosed me with TMS. I was relieved.
But the pain never ceased and kept getting worse every year. I journaled, read sarno's book over and over. I even started seeing a tms thera[pist once a week, but the pain got worse and worse, until I could not move my hip at all, could not bend at all, and was told I looked like a 90 year old all the time. I could never sleep, the pain woke me up every hour.
Went to a different doctor, got a bone scan, found out I have severe osteoporosis, and osteomalacia, and osteo arthritis in my hip. Went to orthopedic at UCLA and he found compression fractures in my spine, and I have actually lost three inches in height. I also have a kyphosis of the spine and chest. My bones have literally been reshaped.
This all happened over the course of 4 years, and I was seeing a TMS MD regularly.
Turns out this is all caused by a severe vitamin D deficiency, which has led to major bone loss, severe weakening of my bones, microfractures all over my body, and fractured vertabrae.
Make sure your MD takes blood, and does the tests a non tms doc would do anyway. The more your tests shoe nothing, the more you can be sure it is TMS. And I woudl stay away from Dr. Schechter, he is horrible!!! He does nothing, did not do one test on me ever. I trusted that he would rule out anything structural before making the TMS diagnosis, but he did nothing!!!
Turns out my Vitamin D deficiency is due to malabsorption in my intestine, caused by shortened and flattened silia that is supposed to absorb the nutrients in my food. The cause for the shortened and falttened silia is still being tested.
No one is more shocked to find a real cause of my pain than me. I have been in excruciating pain for three years. I thought my TMS had progressed to Firbromyalgia, just excruciating pain all over for three years.
And here I have been dropping a bundle seeing a TMS therapist, and seeing a TMS MD at the same time. I feel like an idiot. And now my body is permanently disfigured, and so am I. I have been living through a deep, horrible, crippling aching in my bones for three years, and I thought I ought to warn people.
Make sure your doctor runs tests. Make sure.
Maybe it is a good idea to see a TMS doc and one non TMS doc too. It would have saved me a world of pain and saved my back from literally breaking.
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Edited by - jimmyjimmy on 03/22/2007 13:28:27 |
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alexis
USA
596 Posts |
Posted - 01/02/2007 : 07:15:36
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Hi Jimmy,
Thank you for posting this. I think the whole TMS vs. structual illness issue is one of the most difficult to balance, and a reason why it takes up so many threads. And I have the same fears as you, having myself suffered from a B12 deficiency which can cause many of the same symptoms that some with TMS are suffering. Many here have had run every concievable test, and for those TMS does often seem a good diagnosis. But, unfortunately, some may have jumped on board the TMS bandwaggon a little prematurely.
I think it's important to note that a TMS diagnosis is no different from any other diagnosis--it can be wrong and lead to another missed illness. Or it can be right in part and still lead to a missed illness. In the same way that an incorrect MS diagnosis has caused many to miss their B12 or other deficiencies, and premature TMS diagnosis can do the same.
The problem is that it is very different to tell a TMS person this than to tell this to people with other illnesses. My best advice, and this is something of guesswork, would be to tell TMS folks to get the tests run but not think about them to much (easier said than done?). I do think that vitamin deficiencies are going to be the most common and widespread of causes of non-TMS type TMS-symptoms (just because of how widespread many deficiency effects are), and the tests are simple enough that they shouldn't intrude much into people's lives. And dare I suggest a good Lyme test without having MBP Chapter 6 quoted at me? Aparently I do dare (just).
So for those who haven't seen my posts before, I *do* believe in the core ideas of TMS and I do think an understanding of this theory has been helpful to me. But I also think that Jimmy is right and provides a good warning of what can happen if you accept the diagnosis too quickly and with too much certainty.
Alexis |
Edited by - alexis on 01/02/2007 11:09:33 |
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tennis tom
USA
4746 Posts |
Posted - 01/02/2007 : 07:19:16
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Quoting JimmyJimmy:
"Make sure your doctor runs tests. Make sure.
Maybe it is a good idea to see a TMS doc and one non TMS doc too. It would have saved me a world of pain and saved my back from literally breaking."
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I agree with you wholeheartedly. I believe we saw the same TMS doc and pehaps the same TMS therapist. I've seen two TMS docs in-fact and was told by one to get a hip replacemtnt sooner than later and by the other that it was arthritis, on one ocassion and that it was arthritis and TMS on another.
Modern medicine is good at dx'ing the big stuff that is obvious and the not so obvious stuff too. What your story points out so well is that we are ultimately responsible for being the caretaker's of our bodymind's. If something doesn't feel right we have to persue the system and do the homework to make the system work for us. The docs aren't going to lose any sleep over us if they get it wrong, they've got malpractice ins, they'll just submit a claim if things go south.
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alexis
USA
596 Posts |
Posted - 01/02/2007 : 07:24:35
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quote:
Originally posted by tennis tom
What your story points out so well is that we are ultimately responsible for being the caretaker's of our bodymind's. If something doesn't feel right we have to persue the system and do the homework to make the system work for us.
I think Tom has said it well here. The important part is to be in charge of your own health. Don't replace blind faith in an orthopedic surgeon with blind faith in your TMS doctor. I suspect they both mean well, but neither will put the kind of time or generalist perspective into your health that you can put yourself. |
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jimmyjimmy
USA
19 Posts |
Posted - 01/05/2007 : 16:52:01
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Thanks for your replys. Yes tom, I think we did have the same MD and Therapist. the MD is kind of a knucklehead. Missed my diagnosis for three years. He took x-rays and missed the compression fractures in my spine, and there are more than a few. Plus, every visit with him was rushed and very chaotic, and very scattered, not the kind of operation you would expect from a doc who is aware of how imprtant the mind/ body realationship is.
And as far as suing, it is worthless in this case, 3 out of 4 med malpractice cases are decided for the doc anyway, and here is a case of the doc not actually causing the damage, just missing the diagnoses.
I still am haveing a huge problem wrapping my mind around the horrible structural damage that has been done to my spine and body.
Jimmy
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Edited by - jimmyjimmy on 01/10/2007 03:52:41 |
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HilaryN
United Kingdom
879 Posts |
Posted - 01/07/2007 : 14:40:59
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Jimmy,
I'm really sorry to hear about this. Thanks for telling us.
Hilary N |
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jimmyjimmy
USA
19 Posts |
Posted - 01/10/2007 : 04:12:42
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Wow, still mind boggling to me to think that I reallized every tms'rs worst secret fear. My pain was real! I trusted an MD famous for treating tms, And now I have horrible structual damage to my SPINE, in the form of severe kyphosis, scoliosis, and compression fractures, along with severe osteoporosis and osteomalacia. All because of a severe vitamin D deficiency that went unchecked and therefore undetected.
I praise doctor Sarno for his work. But always get a second opinion. And if you feel your doctor's poor bedside manner is causing you rage,conscious and unconscious, find another doctor! It is amazing to me that even a TMS doctor who's completely aware of the overwhelming role of emotions play in health, could still have a style that is anxiety producing. |
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alexis
USA
596 Posts |
Posted - 01/10/2007 : 08:03:41
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Jimmy, Thanks again for coming by here to share this when I'm sure you've got enough to worry about right now. I hope you'll come back to let us know how you're doing, and also sure wouldn't hurt to bump this topic back up to visibility every few months.
It seems you're now moving into an area which adresses one of the issues I've been trying to get a hold on for a while: How does someone who knows they have a TMS personality cope with what they know is a real health problem? Or do you still feel your diagnosis 14 years ago was correct?
I wish you the best of luck and hope that you can benefit some now that you seem to have a handle on the diagnosis.
-Alexis |
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Michele
249 Posts |
Posted - 01/10/2007 : 13:58:34
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I didn't wait for 3 years, but for 3 months for my knee. I had surgery on Dec. 7 to smooth a tear (which I was mad about, since I know people have tears all the time and no pain). The pain was actually an undiagnosed micro-fracture of the femur. The fracture looked like arthritis on the xray. Then I developed several blood clots and a bone bleed, so I'm still in the healing stage.
My bloodwork is still abnormal and I am "hyper" coagulating, even though I am on maximum blood thinners. Could my "thick" blood be TMS? Anyone? The thought of continuing with this rat poison is making me sick.  |
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Littlebird
USA
391 Posts |
Posted - 01/10/2007 : 14:12:05
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Hi Jimmy,
I'm so sorry about your situation and like the others have posted, I really appreciate that you've let everyone know about it because that is surely something we all need to be aware of.
When I read the book by Dr. Selfridge, Freedom From Fibromyalgia, she mentioned having a back pain that she couldn't gain control over with TMS thinking and she discovered it was a kidney stone. She says the way to recognize physically rooted pain is by whether it responds to the TMS methods fairly quickly. It still doesn't seem quite that easy to me, because some organic pains can also fluctuate in their intensity, so that we're not sure if they are responding to the TMS work or if they are just fluctuating on their own, leaving us with the problem of trying to decide whether testing for a physical problem will set us back in our TMS efforts. If the testing would be short and simple, possibly only setting us back for a little while, that wouldn't be bad, but if there was an organic problem that isn't so easy to identify the testing could become a lengthy search.
I know that medical thinking about the necessary level of vitamin D has been changing recently, with doctors now saying that we need more than they thought in the past and that levels they used to believe could be dangerous are now considered by many to be appropriate, so maybe that thinking that people don't need much vitamin D and that it's dangerous to have more than just a little played some role in your doctor's lack of attention to the potential of a deficiency.
I know I worry about my husband developing bone problems because he has a condition that leaves him without vitamin D, so he has to take a prescription supplement, and he does have regular testing done to check his blood levels of calcium, but I worry that medical science is still not totally sure of what is best in this area and that may catch up with him later.
I guess the bottom line is that we want there to be some clear rules to follow, and there are some areas where there just aren't any clear rules to look to, so we have to try to figure out what to do as best we can and you certainly did what you thought was best for yourself at the time. I know that's probably not a comfort to you now though.
Please let us know how things go for you, Jimmy. Thank you so much for sharing your story. |
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jimmyjimmy
USA
19 Posts |
Posted - 01/10/2007 : 21:19:51
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Thanks for the response littlebird. You mentioned that your husband had a condition that caused him to lose Vitamin D, I am curious what it was called.
They have yet to determime what is causing my failure to absorb vitamin D, they were pretty sure it looked like celiac spue, but the tests came back negative just yesterday.
I now have to swallow a pilll with a camera in it, and they will take pictures of my intestines to see what they can see.
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wrldtrv
666 Posts |
Posted - 01/10/2007 : 23:39:14
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Jimmy,
Thanks for your cautionary note. You would be doing many people a service to reveal the name of this TMS doctor. The way I see it, incompetence has to be exposed, whether from a conventional or TMS doctor. |
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Littlebird
USA
391 Posts |
Posted - 01/11/2007 : 15:07:14
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Hi Jimmy,
My husband's problem is hypoparathyroidism or low parathyroid hormone. This is a very rare condition. The more common problem that leads to osteoporosis is hyperparathyroidism or high parathyroid hormone. I'm including a link to a website that explains that disorder, in case you want to read about it. Either condition can lead to osteoporosis if not treated properly.
The 4 parathyroid glands sit behind the thyroid although they are not related in function. The parathyroid glands actually regulate calcium levels in the body, because calcium is used for more than bone construction. If they find the calcium levels in the bloodstream to be too low, they draw calcium out of the bones, which can lead to osteoporosis. With hyperparathyroidism, one (or sometimes more than one) of the glands produces too much of the hormone which draws calcium out of the bone.
When my husband had thyroid cancer his thyroid was removed and sometimes the parathyroid glands stop working normally after the surgery, which happened to him. Without parathyroid hormone the body can't manufacture the active form of vitamin D, and without adequate vitamin D the body can't absorb calcium from the bloodstream to use in the bones, so patients have to get the proper form of vitamin D from a prescription medication, called Rolcatrol. They also take calcium supplements. There is a non-surgical cause of low parathyroid hormone production, but it's extremely rare. My concern for my husband is that his blood calcium levels are checked fairly regularly, to be sure he's got enough calcium circulating, but that doesn't guarantee that he is getting enough calcium into his bones or isn't losing calcium from his bones to be used for other purposes, and his doctors never check the condition of his bones.
I hope you'll soon find the cause of the shortened and flattened cilia in your intestines. Is there another way for you to get the vitamin D that you need, since it doesn't get absorbed?
Here's the link about hyperparathyroidism : http://www.parathyroid.com/osteoporosis.htm |
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jimmyjimmy
USA
19 Posts |
Posted - 01/15/2007 : 01:33:06
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thanks for the info little bird, it is much appreciated. ANd wrldtrv, I think I should post his name. it is the much praised Dr. Schechter. The thing I find the most appalling is that he is fully aware of th emind body connection, and a visit to his office is nothing but scattered, hurried, and curt.
I remember when it was first discovered that I had severe osteoporosis, and I had to go back to Schechters office (for what I can not remember), and my head was still spinning from all the incredibly heartbreaking news about me actually having a deforming bone disease, and my wife asked Dr. Schecheter to explain what it meant that I had osteoporosis, and he said "You don't have an appointment".
It didn't hit me until I got home how horrible that response was, at the time I was still very shell shocked and very scared about my condition to even respiond. Well the result of the disease is that I have multiple compression fractures in my spine that have caused a horrible kyphosis in my back, and a loss of two and half inches in height! I have gone from 5'9" to 5'6" 1/2.
I have since picked up my records from his office, and his records indicate that I had complained of severe hip pain as far back as 2004. I am now seeing a hip specialist at UCLA, and my he tells me my disease caused me to develop a deformity in my hip socket, and also osteoarthritis.
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Wavy Soul
USA
779 Posts |
Posted - 01/15/2007 : 10:37:31
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AARRGGH!
I'm so sorry.
Our worst fear!
What it brings me to is this:
Yes, absolutely, we need to take control of our own health.
I have never felt like going to a TMS doc (although I might see Sarno if I was right there and it was free) because I expect them to tell me it's TMS, so I wouldn't really be "reassured" by their exams. The thing is, even if I go to another doc and he tells me I have cancer, I would still take it to be a glamorous version of TMS, but that's another story. And it doesn't mean I wouldn't do the treatments...
Personally I do everything in my life in a "both/and" approach.
So I BOTH still go to my naturopath/homeopath whom I deeply trust, and who has a lot of medical knowledge, and I take the remedies, etc. that he gives me. I am doing special exercises for the TMJ pain. I take the natural hormones that make me feel fab.
AND I'm doing the TMS work like crazy, and with a lot of success, I would say.
Good luck, Jimmy. May you rejuvenate and regenerate your incredible human body and get the practical help you deserve.
Also, I agree about the importance of good "bedside manner." My cat got traumatized by an angry vet last week (and so did I), and I'm sure it was going to make her more ill. I took her away and have been giving her deep, regressive psychotherapy for 2 days.
Love is the answer, whatever the question |
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wrldtrv
666 Posts |
Posted - 01/15/2007 : 23:38:59
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Jimmy,
Thanks so much for revealing the name of Dr Schecter. You may save others who read these posts from repeating your experience. I guess the lesson here is that just because someone has been trained by Dr Sarno, written books, is selling himself as a TMS expert, doesn't mean he is either competent or to be trusted. If I were you I would follow up with Sarno. What explanation, justification, would he have for Schecter's performance? Why/how could Sarno approve, certify, Schecter to represent himself as one of his TMS disciples? Is Schecter's performance simply an honest error? Good intentions gone bad? What? |
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wrldtrv
666 Posts |
Posted - 01/15/2007 : 23:47:37
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Jimmy,
As a followup to my last post, let me add this: This my not be your style and it may be counterproductive for me even to bring it up, but assuming everything you said about Schecter was accurate and you could prove it, I would be inclined to "sue the bastard." |
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cheeryquery
Canada
56 Posts |
Posted - 01/16/2007 : 00:41:38
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I've just been thinking about this exact subject. After some bad experiences, I avoid doctors whenever possible. Most seem horribly incompetent to me. My husband had a good one, years ago, who discovered bowel cancer while looking for the answer to a different problem. But that's it. Most of them are a lot better at pushing pills than they are at diagnosing the root cause of the problem.
A year ago, I felt terribly sick because of pills I was taking to counteract the side effects of other pills. My doctor had no solutions except to offer more pills! I couldn't take it any more so I quit going to him and quit taking all the pills. I'm better, now, but hardly in great health. Lots of it is tsm, for sure, but some symptoms just don't go away no matter how much I journal.
It's depressing. |
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jimmyjimmy
USA
19 Posts |
Posted - 01/16/2007 : 10:47:41
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I don't think Dr. Schechter had bad intentions, just not the brightes bulb in the world. He is Certainly not aware of his horrible and enraging bedside manner. His culver city office is a hell hole, and certainly does not inspire confidence.
the thing is that I had started seeing him as soon as I started feeling pain, in 2002. He even took some xrays, but failed to see anything. So I thought I had it covered. He could have done lots of differnet tests that would have shown my horrible vitamin D deficiency, but didn't.
I was in extreme pain for four years, and fully accepted the tms diagnoses, and even started seeing a tms therapist that he recommended for a year, and it only got worse. Maybe 4 years of working the program without improvement, would be a sign to a doc that there must be something else goin on. Now I have compression fractures that have bowed my back and shortened my height significantly. |
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EileenTM
92 Posts |
Posted - 01/16/2007 : 12:03:22
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| I have a story to share that shows that doctors are human, too. And that they can be mistaken even with the best intentions. Medicine is an imperfect science/art. Four years ago I developed a host of symptoms including back pain, insomnia, unexplained weight loss, etc. For two years I went from doctor to doctor. No one could find any explanation. I had many tests including 2 ultrasounds, MRIs,Scans, etc. Two years later, it was discovered that I had a huge (6lb!!) ovarian cyst. By then it was so big, no one could miss it. The surgeon who took it out said it had been growing for at least 2 years and he did not understand why none of my doctors had found it. Once it came out my back pain went away. It was growing on some nerves. And most of my symptoms diminished or disappeared. I do have some TMS, and I apply Sarno's principles. But they could not make the cyst go away! On the plus side, since discovering Sarno I have almost no body pains...remarkable at age 56. I am dealing with some mood stuff which I believe to be tms. I too, use both kinds of doctors, regular and alternative. That way I have both bases covered. |
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Curiosity18
USA
141 Posts |
Posted - 01/16/2007 : 13:12:23
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jimmyjimmy,
I am so sorry about your situation. I hope that your current physicians can get a handle on the vitamin D deficiency and correct it soon. Not to complicate things further for you, but have you considered checking out reputable alternative approaches, such as the Julian Whitaker clinic in Southern California? I know several people with severe medical issues who were helped tremendously there. In any case, I really appreciate your willingness to inform us of your unfortunate experience, in that it is a reminder that not everything is TMS. Please keep us posted on how you're doing.
Curiosity |
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Cautionary tale
