Inattentive Neurologist Leaves Lingering Doubt

Hi all
Although I do suspect my problem is TMS, and I understand that one of the first tenets is to come to terms with the diagnosis, the way a neurologist treated me has left a stone that I still feel might be unturned and I think this may be hampering my recovery.

My problem area has been my lower leg, mostly my left side, although at its worst my right side was also affected though not as bad, which started to have symptoms of pain, swelling, tingling, numbness and electrical shock sensations through my feet which were particularly bad at night.
This problem commenced when I started trying to use flippers whilst swimming.
What's the problem with flippers?
Well, I have always had hypermobility of the joints which caused a lot of pain when exercising (I did not find this out until after I was getting alot of back, leg, shoulder, neck issues when I tried to lift weights or do aerobics...whether there was something else going on is now up for serious consideration, but I digress).

The flippers, according to a physiotherapist, had caused strain on my tendons (hypermobile people have laxity of the joints, therefore the muscles immediately surrounding a joint have to work harder to keep it stable during motion. This causes quicker fatigue, and, I am told, pain).

It was possible that the flippers were causing some kind of injury.

I stopped the flippers, but the pain persisted, until one day I went for a walk up a hill I had walked many times before and my leg practically stopped working. I might add this was a few weeks before I was due to get married...so from a TMS point of view, the two are not mutually exclusive. I had also in the last 18 months: lost my job and did not find another one; started a new relationship, went broke and had to declare bankruptcy due to my unemployment but not before being hounded to tears by debt collectors whilst trying to make good on the money, had to move house as I was unable to pay the rent, moved to a regional area where there was no work for my skillset, ( I had nowhere else to go) and then would spend the entire week on my own as my partner was working in the city. Lots and lots of big stressors and changes and lots of isolation and loneliness. Other health problems also cropped up.

Back to the leg. Several physios proclaimed different diagnoses, including peroneal tendonitis but I did not respond to rehab and did not get better, so it wasn't that. Eventually I had an MRI, (normal) a CT scan (of my spine, to ensure no trapped nerve, normal), and went to see this neurologist. However of all the professionals I saw (and I do not think I was exhaustive in this like some people have gone through), this neurologist seemed completely disinterested.

A crusty old Frenchman who looked like he'd been dusted off and brought out of retirement, he received a phone call just as I walked in and asked me to wait while he took it. I was privy to the call. He seemed quite excited by this call and the 'find' of a 'case' of something particular, as he conversed with another in his field.

So when it was my turn, he seemed like he was already distracted, because he was excited by this other patient's diagnosis. He barely examined me, cut me off mid-story and told me I had "compartment syndrome", which is something that all the doctors and physios said was either not the diagnosis, or if it was, was extremely weird presentation. He told me to rest six months and sent me on my way . I believe that compartment syndrome generally requires surgery, and when I asked about that, he said that it didn't. He based his diagnosis on the fact that he says that he once had compartment syndrome and it just required rest. Again, all the research I had done indicated compartment syndrome requires surgery. So I paid a lot of money for what I felt was the brush-off. And I felt like he didn't really know about compartment syndrome if was simply cured by 'rest'.

When I later saw a sports med doctor who could find nothing organically wrong with me: he went by my range of motion, the MRI and CT scan and the fact that I had seen the neurologist, not anything that the neurologist had done or said...he agreed with two GPs and two physios and felt that it was not compartment syndrome, and this was when the idea of chronic pain related to stress and 'overactive pain receptors' was suggested to me. This was before I learned of the word TMS. He told me to stop all further investigations, don't do any surgeries (not that any had been suggested at that point), prescribed Lyrica and told me to wait until my life improved. This I did.

That was a year ago. I am now married, life circumstances improved somewhat, the pain nowhere near what it had been, but it is still there, lingering, and yes, sometimes it will travel to my foot and some days worse than others and sometimes I can just twist or turn a certain way and it can trigger it. I took myself off Lyrica about a month ago with no real change, though it definitely helped at the beginning, when the pain was worst.
A few weeks ago a masseuse unexpectedly sent me through the roof by yanking my leg by the foot, which caused my ankle to immediately react with searing pain, replicating the pain easily. When I screamed, he said that ankle tendons were in the foot, pressed into my foot, and again I reacted; he was able to reproduce the pain by doing that. This then has made me start to doubt that it is mind/body(I had only just started to read Sarno that very week), and that maybe there was a tendon/nerve problem that no one had looked at.

Even though my sports specialist was suggesting it was a mind/body thing, because the masseuse was able to trigger the pain, and because that nuerologist treated me so flippantly, despite what the sports doctor said, I now doubt sometimes whether it is TMS. I feel that had he been doing his job properly, the nuerologist might have sent me for nerve conduction tests or something. But he didn't, and so I worry that the sports med doctor came to his conclusion based on not enough info. And I still have a problem. It's only not severe because I don't do any swimming or fitness walking any more; or, not often.

I am aware that part of TMS is the chasing down of diagnosis and treatments. No one has told me I have TMS...the sports med doctor did not use that term, but he did describe patients who experienced chronic pain due to over-reactive nerve centres and who made looking for a solution their entire life's work. He did not want me to go down that track.

I would appreciate thoughts on going to my doctor (a new one, as I am now living elsewhere from where all this started), and going through the history, and see if it can be looked at again.I wonder about nerve tests, or whether the sports physio was thorough enough when he pushed me, pulled me, and got me to move this way and that was enough, because theNuero did ziltch , gave a wrong diagnosis that also showed ignorance, and had an attitude to boot.
Or is this TMS anxiety, and so I should suck it up, ignore the flaky neurologist and work on my 'stuff'?

thanks all
Metta

 

Every white coat you've seen except for the French quacker is telling you it's TMS in so many words. They aren't going to call it TMS because barely anyone on the planet has ever heard the term. I'm surprised the white coats are so unanimous in your case that they can't find anything structural--that's usually quite the opposite! They are telling you it's STRESS! = TMS.

You are highly resistant to accepting the TMS dx and keep looking for structural answers--WHY? Most here would be tickled to get a TMS dx. You've certainly had enough emotional life stressing issues, that you've enumerated to create your TMS: See the RAHE-HOLMES list.

As far as hypermobility injury--from using swim flippers--and mind you I'm a tennis player and not a medical expert--I have one word, or maybe it's two--HOGWASH! I've been swimming in a pool, almost everyday for more then twenty-five years, which has six lanes and maybe 1000 members, and I've NEVER heard anyone in the pool, or the hot-tub, ever mention that they've been "injured" by flippers--or hypermobility being a problem. Your joinst have things called propreoceptors, that warn you when they're extending beyond your limits. Dr. Sarno preaches that the body is STRONG!--it's the mind that is not "hyper-mobile". I can't fathom you could injure yourself in a swim-pool environment, where there is no weight bearing by donning flippers for a few laps--unless you fell off the ten meter board wearing them and there was no water in the pool--to paraphrase Dr. Sarno, if its to heavy to lift, you couldn't lift it, or flip it.

I suggest you get back to reading the TMS literature, until you have a better understanding of the theory fundamentls and they are absorbed into your sub-c, and your conscious mind can override the gremlin.. You are way overthinking this looking for loopholes. Everything and everyone, except for one Frenchie-quack, is telling you it's stress, but, you are hung-up on, and keep harkening back to the most faulty of all your dx'es. If you keep googling and going to white-coats, eventually you'll find one who will tell you it's structural, and want to start cutting you up. Dr. Sarno says surgery is the best placebo.

You recently got married, and maybe the next step will be to have children. You better beat this TMS thing now, or you'll be writing here someday that you are anguished that you cannot pick-up and play with your children. Just Do It!

 

In your own words, evidence that it's TMS/stress:

 

Metta,

I endured a very similar situation myself for a few years. Before the diagnosis of atypical trigeminal neuralgia I was convinced something was wrong in the dental realm and to compound this I had a dentist who was young, handsome and beloved by the dental nurses who would flock to his side. Thanks but no thanks Casanova.

My partner went to see him in an emergency and was treated so appallingly I almost took legal action. The dentist knew full well of my partners condition but behaved as if he were torturing someone in the Tower of London. It was that bad.

So we vowed never to see him again and I switched to my partners dentist who is an angel. I had a very bad tms flare-up last year and I went to see her (remember at this point I was still unsure whether there was something actually wrong), and she sat and talked with me for a while. Then she asked me to relax back into the chair and she tenderly placed her hands on the sides of my face. I never let anyone do this lest they trigger the neuralgia. I trusted her and she held me safe.

She thoroughly examined me and was so super aware around the nerve that I barely tensed. She found nothing wrong. I left the dental surgery beaming because finally I felt I had been taken seriously by someone who cared and was fully attentive. It was only after this that I was able to accept tms deep into my bones.

I agree there is a leap of faith to be made but how big that leap is is the key issue. You know in your gut when you haven't been taken seriously or treated right and that renders fragile matters like faith virtually impossible.

I suggest finding a doctor you like and trust and let them examine you and report their findings. From that point you can translate the medical jargon into tms, or not. The point is you need the assurance either way.

On the subject of flippers, I'm a swimmer too although the only aid I use is a float/kickboard but I know those who love them. Aside from working the legs more I can't imagine how they could cause such grief even with hypermobility.

My hunch is that you are suffering with tms however I recognise how much you need some clarification. TMS healing can do no harm and embracing the basic tenets of self-soothing and emotional insight will only hasten healing irrespective of what truly ails.

Plum x

 

Metta, to answer your questions, here are my thoughts:

1. Dr. Sarno is very clear that TMS may and often does cause nerve conduction tests show degradation. Much like MRI may show herniated discs. Just because the neurologist was rude and ignorant, your physical problem (if it existed) should not get worse or better - but your TMS absolutely could. My nerve conduction study was very bad, but I refused to believe that I had carpal tunnel syndrome and thus needed a surgery. The same neurologist conceded three months later that CTS was in fact wrong diagnosis.

2. I read your entire story and every sentence sounds like TMS to me. Flippers or now flippers, you should be able to control your joints without pain while swimming as you do while walking - why do you only feel it as swimming? TMS is the answer!

 

Listen to Tom, you have plenty of evidence of TMS.
The obsession of 'looking for the answer' is a tough habit to break. But that is the whole point of TMS: a distraction.
Time to look inside, not out, for the answers. What is your brain trying to distract you from?
Why not work on your 'stuff'?

 

Hi Metta<

Your story is all so familiar to me.
I am dealing with footpain. When it started four years ago the search for a diagnosis kept me busy for about two years and
made me just as anxious and scared than the pain and disability itself.
saw a neuralagist, footexpets. orthopedic sergeon, psysical therapist, etc etc
they never said the same thing..came up with all sorts of explenations wich made it all worse.
in that time i also had backpain..pelvis area and they linked it all together.
now i can say : they where not because my back is fine now

to relate to your story:
I still remember one footdoctor who was very arrogant and a terrible and nasty man :
he told me : my legs where not even and my back was out..causing scoliosis and
that was the root of my footproblem. only a heel lift and severe manuel therapy could maybe help a bit.
the heel lift made it worse within days. the manuel therapist did not a agree on the whole story and i was totally torn in between .but the point of this is :
the whole experience with this man made me totally doubtfull,scared etc>
I asked other doctors :if i had scoliosis : no i did not etc
the leg difference was there but they told me it did no matter (wich was good news, and i am glad there where some doctors who knew that ) but it was a big item from that day on in my head
in fact it took me almost two years to let go of that "story" by this terrible man.
At one point i realized : they could not agree on diagnosis: , so i could not have "all of these problems " they mentioned. So maybe : i do not have any of them? maybe they are just guessing?
i had no mri or x-ray..or ultrasound to back up any story : there were all clear
i could have gone for the "is the nerve trapped?" test but i must say i do not believe they can tell if that;s the case. It is very easy to get really scared and doubtfull when going out for the search for a diagnosis and maybe that search is far from innocent. when does one stop?

my whole experience in the medical world is not been positive,
i know there a lot of good willing doctors out there, but honestly when it comes to unexplained pain you are at the mercy of the doctor to be so honestly to say " i do not know what is wrong" and too bad some of these doctors just will not admit that.
i know the biggest issue for me is that thought that somehow they did not check something' and
the structural problem is there but they just overlooked. It took me this long to finally let go of that : at some point i had to because it took all me thoughts and energy
you are basicly forced to find your own way..and hopefully : cure
since i am on the "wikipath" i am not cured but still improving and reading an "hoping"
and working on getting there.
i hope you can do the same
goodluck
and greetings
karina

 

I spent at least $2,000 on orthtotics, two pairs for my tennis shoes and a pair for my formal shoes. I saw the most "prominent" running doc in my area, a hot-bed for runners. The walls of his waiting room were adorned with framed pictures of elite runners, all bandaged up running up and through exotic places like Machu Pichu, Death Valley, the Himalayas, etc., all testaments to his footsie-ing genius. The orthotics were painful, and I didn't get any better. I went back and he gave me some cheap heel-lifts to put in my shoe for the "leg that was shorter"--I never knew prior to this that I had a "leg that was shorter". I know now that almost everyone has a "leg that is shorter". The heel lift didn't help either--I went back--he shrugged his shoulders and said, "Put it in the other shoe,"--HUH???, I recall him being very dour.

In my personal experience with foot-doctors, which is about six instances, the one I mentioned above, another I went to for failed toe nail fungus treatments for a year, a tennis buddy attending foot school, a professor at a foot school I knew from business experiences, and visiting my buddy at his foot school. Let me put it this way, it's not exactly on a level with a top ten in the world teaching hospital medical care. I would liken it more to a notch up from chiro. BTW, my ex remembered seeing the "foot-prof" as a youngster, and thinking he was creepy while caressing her feet.

My expensive orthotics, sit moldering in the box under the bed labeled "shoe stuff", with spare laces, running shoe inserts and all the other foot stuff that might be of use someday--or didn't work. I don't have the heart to throw out $2,000 worth of "worth-less" orthtoics--although I know I will never use them again, or to give them away to anyone to inflict more pain. Maybe I can a make a sculpture out of them, and all the other gizmos and voo-doo appliances and quackeries that don't do any good-- if it's TMS.

BTW, after religiously applying the expensive nail-polish ointment on my toe-nails, twice a day for at least a year with NO results I gave up. A few years later, I went to a dermatologist for an itchy hot-tub rash, and he perfunctorily prescribed Lamisil. A while later I noticed my toe-nail fungus had disappeared. I made the connection that the Lamisil tabs indirectly cured the toe-nail fungus. Everyone gets wigged out about Lamisial tabs doing liver damage. The dermatologist didn't do any liver testing on me before rx'ing them. So, in conclusion, I think the bugaboo about Lamisil tabs causing dire consequences is another urban myth.

Boilerplate: I'm a tennis player and not a white-coat, so before you take Lamisil tabs, do your own research, I don't want your liver in my hands. Many of the reviews at internet RX sites highly like it, and had the same experience as me using them, although I was taking them for another skin condition and they indirectly got rid of the toe-nail fungus.

 

Hi, Metta. No wonder you came down with TMS pain. An upcoming wedding on top of losing a job and going bankrupt would be what Steve Ozanich of THE GREAT PAIN DECEPTION calls "a perfect storm" for TMS.

Try to forget what the doctor(s) told you about your pain. I believe in doctors (some of them), but most seem to be just pill pushers. My severe back pain went away when I learned about Dr. Sarno and his book Healing Back Pain.

 

TennisTom

it is a shame : but your story made me laugh..the heel lift " put in in the other shoe" ??well that is crazy stuff!

I wore othodics for three years and all that time in fact I was bussy getting of them. now I still wear some over the counter
pair but that it so much better than where I come from.
the first footspecialist i saw told me I had mortons neuroma and gave me a orthodic that was suppost to spread the metarsals (how
painfull does that sound.ouch) and it did hurt like hell and did not help a bit..still I struggled on them for a year ; why ??
because of pure desperaration and on the other hand : my own inexperience..i never (yes believe it or not) was in the hospital
I was 45 at the time. I was impressed with the doctors and thought they would know! maybe I wanted to believe something..
now that has all changed (too bad maybe more to the opposite side)
sometimes latelely I think that the whole othodics stuff made it all worse and maybe if I stayed away from them : I would
never suffered the way I did.

by the way : no idea why my lines get all these capitals in it..sorry for that!

 

Karina, I doubt your orthotics did any harm--except to your wallet. Our bones and bodies are highly malleable and can contort to a wide range of conditioning--watch the contortionists and carnival acts on the AMERICA'S GOT TALENT show. The only shoe insert I use now are the green Spenco neoprene ones with a small arch built in, they're about $20. My tennis coach recommended them to me, he'd worn them on the pro-tour and was teaching in them for decades. The owner of an old fashioned shoe repair store who sold them to me, showed me he wore the Spencos in his clogs. He said he'd been wearing the same pair for years and he gets them whole-sale. My favorite is playing barefoot on the grass courts or running in the pool with NO shoes. In my running days, one of my favorite races was low tide beach runs wearing no shoes to worry about getting wet and water logged. If it weren't for decorum, glass, nails, splinters and dog poop, we'd feel much better without socks and shoes.

 

Hi,
thank you for your thoughts. I have not yet read all of Sarno, I am new to this, so I didn't knwo that he said that.
2. Re flippers and hypermobility : flippers are renowned for causing injury in swimmers, even those without hypermobility. I didn't know this at the time. But flippers cause torque on the ankles and calves which are trying to move against water. Wrong type of flippers or use them too much, and injuries result. Easily, apparently. Add hypermobility and what you have is a weight pulling on something that is barely holding together itself, (the ankle joint) and then the drag of water causes tendon and sprains and possibly nerve damage if it's kept up.

the problem with hypermobility is that you can't control your joints, that's the whole problem with it! They flop around and get dragged around (through water). Yes, there is some stability, and people vary in their degree of this condition, which is congenital and inherited, but it is the instability when one moves that pulls and strains on ligaments and tendons and causes more sprains, strains, dislocations and faster muscle fatigue than your average Joe. And it is not diagnosed by any imaging machinery. They diagnose you according to how far out of normal range of motion you can flex. Dancers often have it. Yoga is not good for us, or any kind of stretching, it tends (though not always in all cases) to make a particular condition worse, not better.

As I said earlier, although swimming can help with buoyancy - and people with back pain often enjoy swimming because of the support - for joints, it causes a weight that you have to drag. Interestingly, I bought some arm fulcrums to help improve my arm position. But they improved arm pain, which is something I was not expecting. Why was this? It was not the placebo effect. When I described it to a sports med guy, he said that the fulcrums were in fact acting as a 'splint' on my arms, even though they weren't designed for this. Ever had to 'splint' a plant so that it is able to support itself and not fall over? Similiar mechanism.

You ask, why swimming only? The pain started when I was swimming with flippers for the first time, and because of subsequent physical anomalies, I have started to suspect that my body doesn't actually want me to swim (I will write about that another time) but yes, it affected me whilst walking, too. It still does. It never actually goes away, hence my now agreement that it is most very likely TMS. I hope I have somehow explained how hypermobility works.

So no, you can't control your joints to the degree that you would like to, swimming, walking, or anything else. About the only thing it's useful for is if you want to be a dancer. Whether you sustain an injury or other depends on the degree of hypermobility and your general condition and fatigue levels.

thank you for responding, I found your comments about your CTS very interesting.

Metta

 

Ouch, go easy! I don't think I am resistant to the TMS dx at all! It's actually rather new to me. When the sports med doctor said that it was stress related with over-reactive pain receptors and not to pursue any more dx tests, that was all I knew. So I took his advice and I stopped it all. That was a year ago. The idea was for my life to 'settle down', I think. However it was my back playing up (in addition to my leg - still ) more recently that led me to discover TMS, what it is, and that I put two and two together.
The TMS theory and tenets are much more structured than what the sports doc told me. Although he was on the right track, I was sent away with a passive approach. TMS it seems to me requires more of an active approach (journaling, deliberate movement etc).
I have only been familiar with TMS for about a month, and still getting my mind around it, still learning about it.
Currently I am reading SteveO's book and have listened to quite a number of phone-ins. I've been doing a lot more deeper journaling (I was always a regular journaler, anyway), plus talking to the pain, ignoring it, telling it i know what it's up to etc.

So I have not been resistant at all! I believe doubt is part of the process, and since this is really just the initial start to this, a month. please be a little gentle and cut me some slack. I do not believe I have gone anywhere near down an endless path of specialists and tests. I saw three physiotherapists: one for intial assessment (dx peroneal tendonitis, which didn't get better like it should have), one for a second opinion, (wasn't sure) and a third only because she offered a pain relieving therapy that the other two didn't and her assessment was the same as the first physio. Then I saw the arrogant and dismissive neurosurgeon who could make me feel inferior in that special French way. (my issue). Then the sports med doc, on the advice of my SIL who is a chiropractor (which I never go to anyway), and was highly recommended. I could see why he was.

For tests, I had one MRI of both legs (as both were troubling me, but one more than the other), one CT scan of my spine to make sure it wasn't causing a trapped nerve or whatever they were looking for, and I then cancelled the vascular test on the advice of the sports med. I left things well alone for a year. After 3 months of rest I tried swimming again, but it flared up again. Yes, I know now that this is what TMS does, and that the swimming is a trigger. I listened to the sports med doc once he said what he did. But after a year nothing was better by much, and I didn't know yet about TMS.

And yes, you can injure yourself with flippers in the pool, though with all the usual over-use or tendonititis that Sarno would say is TMS and possibly is. Though 'real' tendonitis tends to settle down after a few weeks of backing off and building up again.

There is such a thing as too much, too soon with the wrong equipment. And people can choose the wrong sort of flippers, as I understand it. It's the drag in the water that causes the problems, especially if ankles are weak, and many people have weak ankles.

And PS even though I recently married, I will not be having children any time soon - thank God - because I am past the age for it. I have too much of an inner brat to manage, actually.

I am with the program, ok?

 

Hi Plum
thank you for your reply; gentle and caring as always!
Thank you for your story.

I have let some time subside since I first wrote to 'play around' with TMS and inner work and see what else crops up. As you may recall when you responded to my very first post, I had been in grief for the loss of my pet rat. By deepening my already regular journaling work, a week later the grief associated with the rat morphed into grief for my dead father of 30 years, for whom I had never truly grieved, such were my negative and hostile memories of him for the last 30 years.
This led to a completely new sense of my relationship with him to a positive one. I was no longer the angry, apathetic adult, but the sad child who loved and adored him. My pains started to shift and move.
So I've done some more work, lots of it, but think I have hit a depression and sadness that is very deep.
Consequently although my leg pain lessens at times, my GERD has flared up. I knew for sure that this has to be TMS, and therefore probably the rest of it, as well, because I had quit drinking, and the GERD had increased, not decreased, alcohol being one of the top 5 things to avoid with GERD.
So I am working on emotional insight.
I may still go back to a new doctor I trust, but I've made the appointment so far in advance that I have the luxury and option of backing out at any time.
thank you again for your support and suggestions.
Metta

 

Yes, I agree. When he listed out the life events that I have been through recently, it really hit home.
I do not believe that I have an obsession with 'looking for an answer' because after the sports med doc told me to leave things until my life changed, I did. I stopped and just went on with life. But it's a year later, the pain is still there, though not nearly as bad (at least I can walk, now) and now I discover about TMS.
What is my brain trying to distract me from?
I figured that out in the last few weeks.
Overwhelming sadness and disappointment (mostly with myself) with a side-serve of fear. Lots and lots and lots of it. Now that I am not drinking either, it has caught up with me. I meditate.

 

Thank you, Walt, yes, it took me a while, and Tom's list, to make me see that I had a perfect storm. It even extended before those events, and into the future (two house moves to another state within 3 months of each other, with another one due soon - and still unemployed and isolated most of the time).
thank you again
Metta

 

Oh dear. I almost went down the track of buying really expensive runners on advice of my physio. Thank you for your story. Perhaps you could make art out of your orthotics?!
Metta

 

I love the thought of all of us making art out of all the useless stuff we've bought to try to treat our symptoms. Thanks!

 

Metta,

Thanks for this. I used to dance with a girl who was hypermobile. She used to execute the most amazing backbends with an ease that was breathtaking. I've wondered about her since and how she fares.

I also appreciate the insight into flippers. I decided not to get them for my partner because one of the swimmers told me they work the legs a lot and it would probably be too much for him. Factoring in your thoughts makes me think I made the right choice. This and the fact that he is the only person I've seen sink while using a float...

Plum x

 

Metta, bless you.

You've uncovered such a profound grief; tms is rendered most intimate in the unmasking. I know you are brave of heart and while these may be early days in terms of learning about Sarno, already you are enveloped in transformation.

Take good care my dear.

Plum x