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Colleen
USA
138 Posts |
 Posted - 05/12/2005 : 12:04:55
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Hi Everyone,
Just got back from visit #2 to the TMS Doctor. It has been 6 weeks since my first appt. I have done all the reading and journaling and "thinking psychologically" and even listened to some CD's.....anyway, I have had no improvement in 6 weeks. The TMS Doctor has decided it is time for me to go back to Neurology....at a different Hospital this time. The lack of any improvement has him wondering if it is a neuropathy after all.....of which, even he admitted there is no "cure". He also said that the TMS diagnosis does not work for everyone. I see the Neurolgist in about 6 weeks !! Soonest appt. I could get.
Colleen |
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Dave
USA
1864 Posts |
Posted - 05/12/2005 : 14:47:16
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Don't let that sway you from continuing the TMS work.
I did not have improvement in 6 weeks. Dr. Sarno did not sway at all from the original diagnosis. 6 weeks is simply not enough time for many people.
Neuropathy is an unspecified abnormality of the nervous system. In many cases that diagnosis is TMS.
Frankly, I am skeptical of this doctor... |
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jayjb2001
7 Posts |
Posted - 05/12/2005 : 14:55:10
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| Colleen - I'm not familiar with the disorder you describe, but I will say with complete confidence that 6 weeks is not nearly enough time to conclude that it's not TMS. That the doctor would say so makes me question whether or not he/she truly believes in TMS. When I first explored TMS it took me almost a year for my pain to begin to subside. Now, when I have flare-ups it's much much quicker. Keep at it and stay positive and patient. Find another TMS doctor if you need the confidence of a "professional" opinion. |
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Colleen
USA
138 Posts |
Posted - 05/12/2005 : 16:10:41
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Thanks for your positive replies. This TMS Doctor was suggested to me by Dr. Sarno. There are several people on this board seeing him as well. I think his concern is that I have shown absolutely no improvement and he was hoping for even a glimmer of progress.....of which ther is none, even though I have done all the work. As a matter of fact, I now have pain in my legs up to my hips at times. This idiopathic neuropathy (in both feet) showed up about 6 weeks post-op from a total abdominal hysterectomy, which directly followed my Mom's death from a gynecological cancer (ovarian). I know that TMS seems reasonable under those circumstances, but I have often wondered (before I even knew what TMS was) if a nerve was hit or compressed. My surgeon finally told me that might be possible, though Unlikely. All the other Doctors I have seen, said it would not be possible....but lets face it, Doctors cover for each other. I have an anxiety condition as well, so I thought maybe that is it, but they tell me that is not the "presentation" for anxiety. All I know is that I was not this way before I had surgery and now I am.
So, I will see what this next Neurologist has to say. The TMS Doctor told me that I could keep doing the TMS work, if I felt like it, but if it was too much, to let it go for now. He did not schedule a follow-up, but said I could e mail him after I saw the Nuerologist (in 6 weeks!!). I think he was as frustrated as I am....except he is not in pain.
Colleen |
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marytabby
USA
545 Posts |
Posted - 05/12/2005 : 17:24:55
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Colleen,
I can't remember whether you are in psychotherapy or not. I am assuming you are, and that is the reason you are leaning towards the neurologist? If you are not in therapy, now might be a good time to get it going. It may be the thing that gets the ball rolling. If you are already in therapy then I'm not sure what to say. I think however it's what Sarno would say is the next step before giving up on TMS. |
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Colleen
USA
138 Posts |
Posted - 05/12/2005 : 18:08:06
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Mary,
I have been in therapy for years....first for my issues with anxiety and more recently due to my Mom's illness and death.
The reason for the Neurologist is because of this possible neuropathy (nerve damage).
Colleen |
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marytabby
USA
545 Posts |
Posted - 05/12/2005 : 18:11:44
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| Oh, ok. I was suggesting only as a last ditch effort to help you sort this out. Well then, you have some fancy footwork to do. I hope you get this figured out at some point. It is frustrating! |
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Colleen
USA
138 Posts |
Posted - 05/12/2005 : 18:11:47
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Dave,
Do you believe the statemet that "TMS does not work for everyone"?
I keep hearing the Doctor saying that. Did he doubt from the onset that my case was TMS ?
Colleen |
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Colleen
USA
138 Posts |
Posted - 05/12/2005 : 18:17:11
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Mary,
You saw the same TMS Doctor that I did. I think a few of us suggested him to you. Did you feel confident about him; about his diagnosis?
Just curious.
Colleen |
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marytabby
USA
545 Posts |
Posted - 05/12/2005 : 18:34:48
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| I felt confident but I also sensed that he is not a purist. He has a lot of agreement and not so on other ideas. He is not Sarno, that's for sure. I've not met or heard Sarno but I can tell you he is not totally die hard Sarno. I think since he's in my area I am happy I just got to see SOMEONE. I have a lot of footwork ahead of myself, so whether he can help me or not, we'll have to see. I just try to plug away as you do. I hope to God I'm successful. I wish you all the success in the world with this. It's hard work. |
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Colleen
USA
138 Posts |
Posted - 05/13/2005 : 06:44:12
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Thanks Mary. I agree that he is not "pure Sarno"....he even said that to me on my first visit.....something about, he thought Dr.Sarno was a genius, but did he "get it all right"...."no, I don't think so."
I will go to this new Neurologist in about 5 /6 weeks and take it from there. Not sure what else I can do.
Thanks!! And all the best to you !!
Colleen |
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molomaf
119 Posts |
Posted - 05/13/2005 : 07:46:56
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Colleen
I think that some pain syndromes are very hard to diagnose and you tried the TMS diagnosis first. But I would be doing exactly what you are doing and ruling out that it could be something real.
There are the rare occasions that it isn't TMS and when it has been going on as long as it has for you, then it is time to get a traditional medical opinion. When that turns out to be inconclusive, you will know that it IS TMS. Can't hurt to do the work anyway.
I saw the same TMS doc and he said the same thing to me - that Sarno is a genius but he is wrong sometimes. No one can be right all the time! I think he is talking very small percentages here and for the most part he and Sarno are on the same page.
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Edited by - molomaf on 05/13/2005 07:54:50 |
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Colleen
USA
138 Posts |
Posted - 05/13/2005 : 08:06:51
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Molomaf,
I really appreciate your opinion on this. I now have a great deal of fear that it is something that will never resolve.....but I guess I will have to figure out how to live with it, one way or another.
I will let you know what happens.
Thanks,
Colleen |
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Dave
USA
1864 Posts |
Posted - 05/13/2005 : 08:42:06
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quote:
Originally posted by Colleen
Dave,
Do you believe the statemet that "TMS does not work for everyone"?
I keep hearing the Doctor saying that. Did he doubt from the onset that my case was TMS ?
I'm not sure exactly what he means by "does not work." Is he referring to the diagnosis, or the treatment?
Of course there are chronic pains that are not TMS. But there are clear patterns that provide clues (pain comes and goes, pain moves to different locations, common TMS-prone areas are sensitive to palpatation, etc.). Someone's personality often gives the biggest clues, since many TMS patients share similar traits.
Assuming he's referring to the treatment, then I agree completely. There are some people that cannot accept TMS. Visit one of the fibromyalgia forums and you'll see a perfect example. Acceptance of TMS requires a keen insight, one that many people are unwilling or unable to make. Many people dismiss the concept because they feel as if "they are to blame" for the pain, or that "it is all in their head." Many people need the pain because the psychological issues that it is distracting them from are too difficult to face.
Assuming that you have been completely honest with yourself, that you really do believe in the TMS concept and that the diagnosis applies to you, and that you have been trying your best to ignore the pain, resume physical activity, and explore the psychological origins, then you probably should have at least some signs of relief within 6 weeks: one day where the pain is a bit less, a few hours here and there where you forget about the pain. However, some people experience exactly the opposite: more pain, or pain in different places. This is TMS fighting back. This often occurs in people with deep rooted psychological issues.
Therapy alone is not helpful to TMS. It has to be with a TMS-trained therapist, or at least a Freudian therapist who is open-minded to the TMS concept. It is essential to connect the symptoms with repressed emotions.
Treating TMS is hard work at first, but over time it becomes second nature. I think it is part of a healthy lifestyle. Regardless of the symptoms, it is good to be aware that we are constantly repressing emotions and we should try to feel them as they occur instead. We should accept that psychogenic symptoms will appear from time to time, and should be treated like a "check engine" light on our dashboard. The light will go off if we address the core issues, or sometimes it will go off on its own if we just ignore it for awhile.
Maybe you were trying too hard at fighting TMS. That can definitely happen and cause treatment to backfire. Still, I believe there is a strong possibility TMS plays a role in your pain, and you shouldn't give up in 6 weeks. For me it took over a year. |
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Colleen
USA
138 Posts |
Posted - 05/13/2005 : 13:14:49
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Dave,
Thanks for your reply.
Maybe I was trying to hard and then I let the doubt in.....however the TMS Doctor seeming doubtful didn't help either. The thing with my feet pain is that it is always present 24/7.....and worse the more I stand or walk.....or for some strange reason, when I go to bed and the covers touch my feet.
Colleen |
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Jackie
27 Posts |
Posted - 05/14/2005 : 22:19:43
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Hi Colleen,
It's been about three months since I've read Dr. Sarno's book and
I'm sitting here at midnight...because my legs are killing me and I can't sleep. I know what happened to me...I stopped really working on my pain and then it started to flare up...and doubt crept in. Now I'm back where I started. The description of your problem sounds like it came out of Sarno's book....classic TMS.The Dr. you saw sounds wishy-washy to me. Just what an anxious person needs...someone who is not sure! Anxiety is worry...and worry leads to doubt...and doubt leads to failure. I know that the minute I started thinking...what if this pain is really something dangerous, I lost all of the progress that I made. You have six weeks before the appointment with the neurologist...if you spend that time waiting for the "real" answer from the next doctor, you haven't a chance in making progress. I guess that answers my question as well...I need to begin again.Why don't you give it another try...let's see where we both are in six weeks!
Jackie |
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Laura
USA
655 Posts |
Posted - 05/14/2005 : 23:15:27
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Hi, everyone,
Jackie, I agree with you. Colleen, I've been plugging away at this TMS stuff for nearly a year. I had started to make some real progress. There were days when my dizziness was so light I could definitely see it weakening. Then, I started developing other "equivalents," which included mouth sores, stomach distress, a weird burning sensation in my thumb, you name it! Most of those problems are gone but with all the stress I've got going on (daughter's bat miztvah is one month from today - 150 guests and huge party - plus my daughter has been bullied at school and I've been fighting with the school and district all week) my dizziness has come back in full swing. Jackie is right. All three of us need to take out our books (I already have!) and start all over again. Dave is also right. It can take a long time before you see any improvement. Some people make progress faster than others. Perhaps we just have so many deep seated emotions and so much anger that we have to chip away at that it might take us longer. It doesn't mean we won't get there though.
Colleen, is there another TMS doc in your area? I say pull out your books and start reading all over again. That's what I'm doing. I noticed I felt the best when I was reading the books and highlighting what pertained most to me. Listening to Dr. Schechter's CD's helped a lot too.
Also, Colleen, be patient with yourself. You have been through so much, what with the loss of your Mom.
I'm so thankful we have this forum and each other to talk to. Thanks, Dave, for making that possible. Reading on this forum always gives me hope. It's the light at the end of the tunnel.
Laura
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holly
USA
243 Posts |
Posted - 05/15/2005 : 08:38:12
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Colleen,
It seems like everyone pretty much said what I said to you in my email. (I only came on the board to check to see if their responses were like mine, to your situation) I dont "read" posts anymore because I found that if someone said "dizzy" I would start feeling fuzzy etc. The brain overpowers all! My husband told me something VERY interesting. He reads alot of science mags. etc. and told me there are people who had their leg/legs amputated and still felt extreme pain in the leg that was gone!! Now go figure that!! See what I mean??????????
P.S. I new that Dr. wasn't a REAL TMS Docter. |
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alinnyc
USA
20 Posts |
Posted - 05/15/2005 : 10:41:57
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Colleen
Read your post. My heart goes out to you. I very much agree with Dave's posts. The timing of your symptoms makes it sound like a clear case of TMS. At the same time I completely understand your dilemma. The tough thing is,that if it is TMS then by going down the other road, or by having doubt, the cure won't happen. I wonder if Dr. Sarno would talk to you about your case. Would it help to call him and tell him about your experience and the diagnosis of the doctor he recommended.
Doctor's give bad advice all the time and it is way to important to get wrong. The mind is a incredible and powerful force. If the hurt is deep it may resist to give up its defenses. You've endured an awful lot and the defenses my be significant. Best of luck in getting well. |
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Jackie
27 Posts |
Posted - 05/15/2005 : 14:37:21
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Great insights... It is amazing, if I look back at other postings we are all saying the same thing. Complete strangers that have had the same experiences...just like when I read Sarno's book and saw myself on every page. Yet after a short time I guess I did get impatient and give up.After being miserable for two days I realized how much progress I actually made. This forum is really helpful...I couldn't do it without all your support..Thanks! I am back to the book.
Good Chi to all
Jackie |
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Laura
USA
655 Posts |
Posted - 05/15/2005 : 15:02:19
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Reading this thread reminded me of something that happened years and years ago, when my kids were young. My daughter was about 3 years old and she woke up one morning and she couldn't stand up on her one leg. She cried that it hurt and this went on all morning long. Finally, I called the doctor (a new pediatrician we had just started going to because of insurance) and I took her in. The doctor said "I think we're dealing with an autoimmune disease here. I think she has something like Lupus." Mind you, I also had a young baby at the time (my younger daughter was only a few months old) and the stress of thinking my precious 3 year old child had an "autoimmune disease" was unbearable.
I came home and I immediately called my husband's cousin, a doctor fresh out of medical school. He said the pediatrician was off his rocker and that the chances my daughter had an autoimmune disease were slim to none. I then spoke to my brother-in-law, also a physician, who said the same thing. After a couple days, whatever it was completely went away. A friend of mine took her son to the same pediatrician about a year later and guess what he told her? That he thought her son had an autoimmune disease (must be one of his favorite "diseases" to diagnose). The man is a quack!
Just because someone has gone to medical school doesn't always make them right. I know plenty of physicians who have misdiagnosed either myself, my family, or my friends. My 12 year old had pneumonia last year. The pediatrician (a different one) told us she had some simple virus and that it would go away. Mind you, she had a fever of 105 for five days straight. We called my brother-in-law and he said "Did they do a chest x-ray." They had not. He said "You can listen to the chest till the cows come home but the only way to rule out pneumonia is with a chest x-ray." We insisted they do a chest x-ray, and then the idiot doctor didn't even wait for the radiologist to read it. She read it and said, in a mocking tone of voice, "Your daughter is fine. I looked at the x-ray and she doesn't have pneumonia." She then went on to tell me that my brother-in-law doesn't know what he's talking about and that he's being overly cautious because he's an E.R. doctor. We walked out of there and drove to another pediatrician. He spoke to the radiologist and it was confirmed my daughter had bacterial pneumonia of the left lower lobe of the lung. She could have died. It was really bad!
I had one doctor tell me I had labrynthitis, even though you cannot see the inner ear so there is no way of actually knowing this. They told me my dizziness would be gone in three weeks. Three weeks later, it was gone! Then, I went on the trip to Cancun three years ago and the dizzy thing started up all over again. Nobody told me a particular time line of when to expect it to be gone. However, I did read about a horrible condition known as Mal de Debarquement syndrome, where there is no cure and where the dizziness can last for years and years. Guess what, I've had it for three years. The power of the mind is amazing. That's where Dr. Sarno's philosophy comes in. You need to read the book, re-read the book, and then read it again. You need to think psychologically, because I've gotta tell you, I think 99.9% of what happens to us is induced by the brain. I swear!
Anyway, just reading about this TMS doctor reminded me of that story and I had to share.
Laura
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May not be TMS afterall
