discouraging visit with TMS doctor

[mirepoix]

Mirepoix, are you feeling better?

I am a bit, thank you.
Spasming has subsided, and I am back at work today, getting around ok. Still sore and a bit scared, as I usually get after an espisode like that. It takes me a while to build up confidence in movement afterwards but I am striving towards that.

 

[Jason32]

It seems some of these TMS Docs don't believe all that much in TMS... or else maybe they're just still worried about covering themselves. For instance, earlier this year I contacted a TMS Dr. regarding chronic pelvic pain (I won't say who it was only to say that this Dr. wrote a chapter in The Divided Mind too). I was told I needed to be evaluated by at least two urologists first before being seen for possible TMS- as if the urgent care Dr., orthopedic Dr., colorectal surgeon, nurse practitioner and two gastroenterologists I had already seen wasn't enough.

I believe, for the most part, if you think its TMS, you have to do the work yourself. A TMS Dr. may possibly help, but they also have the potential to give a huge nocebo. Some of them don't seem to be as adamant about the principles as Sarno was.

 

[riv44]

I believe that we must do the work ourselves, however....

 

[mike2014]

It seems some of these TMS Docs don't believe all that much in TMS... or else maybe they're just still worried about covering themselves. For instance, earlier this year I contacted a TMS Dr. regarding chronic pelvic pain (I won't say who it was only to say that this Dr. wrote a chapter in The Divided Mind too). I was told I needed to be evaluated by at least two urologists first before being seen for possible TMS- as if the urgent care Dr., orthopedic Dr., colorectal surgeon, nurse practitioner and two gastroenterologists I had already seen wasn't enough.

I believe, for the most part, if you think its TMS, you have to do the work yourself. A TMS Dr. may possibly help, but they also have the potential to give a huge nocebo. Some of them don't seem to be as adamant about the principles as Sarno was.

I think Tennis Toms signature sums it up so well...

"...there are so many things little and big that are tms, I wouldn't have time to write about all of them" Dr. Sarno

As SteveO stated in another post, different TMS Drs view TMS through different lenses and therefore have varying views of what's in and out of scope.

Once you've ruled out there is nothing structurally wrong, then you should assume it's TMS rather than feeding the fear and doubt cycle.

 

[Jason32]

Once you've ruled out there is nothing structurally wrong, then you should assume it's TMS rather than feeding the fear and doubt cycle.

People get caught up on the "rule out anything structural" though... The problem is that you can never truly 100% rule out everything structural. There are plenty of rare diseases and things that don't show up on imaging tests, etc. You can keep going to doctors, physical therapists and chiropractors forever, they will all have a different opinion on something structurally wrong, continue to send you for tests or else refer you out to someone else if they're not sure. More than likely, no one can ever officially tell you its TMS. So in the end, it really requires taking the leap of faith.

 

[JanAtheCPA]

The problem is that you can never truly 100% rule out everything structural.

I agree. And we can't forget that even if there is something structurally not right, that doesn't mean it's a life-threatening condition that has to be immediately treated with surgery or whatever in order to avoid dire consequences. Dr. Sarno found plenty of evidence of structural abnormalities and damage that were causing no pain whatsoever and with which the individuals were living totally normal lives.

If you go to enough specialists, someone WILL eventually find something "wrong". Whatever that means.

 

[David88]

It seems some of these TMS Docs don't believe all that much in TMS...

Sadly that seems to be true. I had a much better experience with Dr. Gwozdz. He certainly gets TMS, having recovered from it himself, and having trained with Sarno. He had no hesitation telling me that my back pain was TMS. He did he most thorough exam I've ever had, by far.

 

[IrishSceptic]

Hi, mirepoix. I was not familiar with Marfan's disease so I did a Dr. Google search and found some articles and web sites about it.
This one is from the Mayo Clinic:

Marfan syndrome is an inherited disorder that affects connective tissue — the fibers that support and anchor your organs and other structures in your body. Marfan syndrome most commonly affects the heart, eyes, blood vessels and skeleton.

People with Marfan syndrome are usually tall and thin with disproportionately long arms, legs, fingers and toes. The damage caused by Marfan syndrome can be mild or severe.

Treatment usually includes medications to keep your blood pressure low to reduce the strain on weakened blood vessels. Depending on the severity of your symptoms and the part of your body that's affected, surgery may be necessary.

I hope Steve can give you some advice and also lead you to a TMS therapist.

Anne Walker gave you some real good advice.

Osama Bin Laden was rumoured to have died of Marfans in 2001 acc to conspiracy theorists at least #funfact

 

[IrishSceptic]

I know an adolescent with inherited Marfan's. It is obvious. His dad was 6'7" and he is nearly 7 feet tall. Has great treatment and it can be controlled.
When I am anxious, I get a lot of symptoms. I have had TMS all of my life, but only recently discovered TMS.
It is INEXCUSABLE that the professional health community is not aware of this.

AMEN, it really is a great tragedy

 

[mirepoix]

Interesting, I hadn't heard that one.

I also found out from my searches about college basketball star Isaiah Austin whose pro career was cut off by a Marfan's diagnosis. He was 7'2 though (I'm 6'2). It is encouraging to me that he at least was in good enough shape to be playing college ball, and only ended his career over heart concerns. So it's not like everyone with Marfan's should be in horrible pain all the time.

Hell, I don't even know the chances I even have this though, I've sort of decided I probably don't. I'll still see genetics guy in Dec just to get the blood work done. A big part the rheumy's suspicion seemed to be from the fact that I can wrap my fingers around the opposite wrist and make them overlap slightly. But I've found that most people I ask can actually do this, so what the heck.

 

[riv44]

We all "have" something. The great thing about TMS for me is that it is not a limiting disease. Awareness is the opposite of degenerative. I have hope.

 

[JanAtheCPA]

Well, mirepoix, I hope you'll keep us posted, and that you'll continue to work the program in the meantime.

And you started a really interesting discussion!

 

[Hopeful_Alexandra]

Hi there,
Just thought I would chime in on this interesting topic. I remember being surprised by some of the chapters I read in that book, as well. They seemed a lot more wishy- washy in their opinion of what was or was not TMS. When I went to see Schubiner, I seem to remember that he didn't spend a whole lot of time on my medical records. His physical exam was super short as well. Most of the time was spent on my history and him educating me on the process by which the brain creates pain.

 

[KatieDid123]

I just read a testimonial on Dr. Scubiner's site that mentioned Marfans. Might be worth a read for you Mirepoix! http://www.unlearnyourpain.com/testimonial-11

 

[JanAtheCPA]

Good catch, Katie! That second geneticist was so sure about the Marfans diagnosis, yet the patient completely recovered a few months later by following Dr. Schubiner's program.

Isn't this work amazing?

 

[armchairlinguist]

A big part the rheumy's suspicion seemed to be from the fact that I can wrap my fingers around the opposite wrist and make them overlap slightly. But I've found that most people I ask can actually do this, so what the heck.

I can do this, and I'm 5'6" and have tiny hands. Pretty sure I don't have Marfan's. I just have small wrists as well.

I am mostly replying not for that, but to say that I've also had the experience recently with doctor telling me I'm fine, and suddenly I am (which you mentioned). And then a doctor said you weren't fine and you weren't. Placebo and nocebo. That is TMS...

Even if you need to get checked out for peace of mind (I have admit internal bleeding would sound concerning to me as well) then it doesn't mean you have to suffer between now and then. Either there is something you need to do medically once you have the tests, or there isn't. There's nothing to do now, so for now, just live as well as you can.

 

[mirepoix]

I wanted to give an update since writing this for anyone who may find one useful. I attempted to edit the original post, but I can't figure out how to do it so I will just do it as a reply.

It is just about a month since I posted this, and I've been doing much better! It is almost certainly due to the support I received from this community. I found myself changing my entire perspective from isolated and hopeless to feeing that others understand and care. My back has been 95-99% better, pretty much as if I had never had any pain at all.

However, I have a very strange recent development; I cannot stop coughing. It has only been two weeks, but it is unlike any cough I have ever had in the past, since it has no other accompanying symptoms such as runny nose, fever, etc. I figured it may be walking pneumonia, mild bronchitis, or something like that. It very well may be. However, it also could be that old symptom imperative rearing it's head. We will see. So far it is only a mild (yet constant) irritation, so I'm not very worried either way. Just found it curious that it developed just as soon as my other symptoms resolved.

I've been battling pain for nearly two years now, on and off (mostly on). I have been to lots of doctors. All together a rheumatologist, 3 GP's, an orthopedic surgeon, four physical therapists, as well as a chiropractor, massage therapists, and a few acupuncturists.

I've had two MRI,s one lumbar one pelvic. They showed mild DDD, L5/S1 herniation with some internal bleeding/hematoma.

I've had pain in lower/mid back, pelvis, coccyx, si joints, left knee, neck and maybe a few other places. I was CERTAIN I was a classic TMS case and I wanted to just go ahead and verify this by seeing a real TMS physician. I booked an appointment with a guy who wrote a chapter of the divided mind and worked side by side with Dr Sarno at Rusk for several years.

I thought it would be an immediate diagnosis, followed by encouragement to think psychological, not physical. This is not what happened. Instead, he said the internal bleeding is possible cause for concern, and referred me to a neurosurgeon to see if I need surgery. He also noted that the rheumatologist thought I might have something called Marfan's, which I had never heard of.

Marfan's is pretty much a nightmare condition for someone with TMS who has a vivid imagination concerning their own pain. Basically, if I get a diagnosis it means my heart could rupture and any time, killing me instantly, and I can expect a life of episodic, vague musculoskeletal and connective tissue pain. The doctor assured me that neither he, nor Dr Sarno himself knew anything about or had any experience working with Marfan's and how it may interact with TMS.

So now I am awaiting an appointment with a genetics expert to get bloodwork for possible Marfan's diagnosis (three months I have to wait!) and an appointment with a neurosurgeon to see if I need spinal surgery, (one month wait) all at the recommendation of probably the highest authority on TMS practicing medicine today. I was crushed.

Wouldn't you know it, a week after hearing all this my back "goes out" again. I am here in bed, missing work, in agony, incapacitated for the first time in probably 8 months and I have no defenses whatsoever. In the past, I could take consolation in all my TMS literature and support, and I feel that has now been taken from me.

Just looking to see if anyone has been through something similar. I just got all the wind knocked out of my sails.

 

[Tennis Tom]

My back has been 95-99% better, pretty much as if I had never had any pain at all.

...However, I have a very strange recent development; I cannot stop coughing.

...However, it also could be that old symptom imperative rearing it's head. We will see. So far it is only a mild (yet constant) irritation, so I'm not very worried either way. Just found it curious that it developed just as soon as my other symptoms resolved.

WoW! That's great about your back SUCCESS! Yes the cough sounds like ye ol' SYMPTOM IMPERATIVE at work. I will get an occasional cough flare-up and I figured out it was a TMS symptom. I have a small spray bottle of Chloraseptic spray that I keep handy that works well for relief of the symptom. Now that I know it's TMS, I hardly get it anymore. I know several coughers who I'm sure it's TMS. One guy I play tennis with, and as soon as things get tight on the court he starts coughing, I call him the "choker".

As far as editing posts, I think after a period of time the edit button goes away and you can no longer edit an older post--somewhat annoying to TMS perfectionists who want to tidy up an old post. I don't know if there's a reason for it.

 

[JanAtheCPA]

I wanted to give an update since writing this for anyone who may find one useful. I attempted to edit the original post, but I can't figure out how to do it so I will just do it as a reply.

Replies are better, mirepoix, because those of us who posted, and who are interested in following up, will get an alert that there's a new post! And what a great one!!! This is such awesome news

I agree with Tom - chronic throat irritation is going to be TMS - perhaps brought on by something that would normally be temporary if your brain didn't need something else to latch onto. Isn't it lovely that your new symptom is something completely different - just to keep you on your toes