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ennio
28 Posts |
 Posted - 03/11/2012 : 13:48:04
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After embracing the TMS concept and resuming many lost activities during the past year, I am wondering if a family member, who has been diagnosed with neuropathy, has TMS.
He has had progressive tingling and numbness in his feet and hands for about 6 years. And every so often, he gets total muscle weakness for weeks when he can barely turn a doorknob or put on a shirt or even walk. At one point he required hospitalization it was so bad.
He has had a battery of tests with neurologists and immunologists to rule out things like Lupus and MS. The latest diagnosis is CIDP whose definition is: "The cause of chronic inflammatory polyneuropathy is an abnormal immune response. The specific triggers vary. In many cases, the cause cannot be identified." The doctors have also told him the same, that they are not sure what the cause is. It verifies my concerns it could be TMS.
He has been going for these week-long IVIG treatments (like chemo, but without the immediate side effects) every few months that the doctors and he believe stave off the weakness. I worry about long-term effects of this.
In any case, I tested the waters by gently mentioning the idea of TMS without dissing his doctors, and he wasn't receptive at all. So I'm not going to push it. He'll have to come to it on his own.
Yet, I am concerned that he has TMS since his tests really haven't shown anything of note. And doctors gave him this physical diagnosis, much like fibromyalgia, that seems to be a diagnosis based on exclusion.
If anyone either has experience or knowledge or thoughts in general in this area, it would be greatly appreciated. I don't want to proselytize TMS when it can't be accepted. The only other thing I can think to do is suggest one of Sarno's books, but since they are light on neuropathy, it might not do much for him. |
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Ace1
USA
1040 Posts |
Posted - 03/11/2012 : 14:00:04
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| Yes it's tms. Work on it the same way and it will go away. It moves around and acts in the same way (ie there sometimes and sometimes disappears mysteriously. |
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Goodney
USA
76 Posts |
Posted - 03/11/2012 : 21:02:06
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| I was diagnosed two years ago with CIDP. It is a very serious, incurable neurological disease that can lead to paralysis. I receive intravenous immunoglobulin (IVIG) every other week. While I believe that CIDP can be triggered by stress -- and I do believe it triggered mine -- I do not believe it is TMS or a TMS equivalent. EMG/NCV testing confirmed significant demyelinization of my peripheral nerves (damage to the protective myelin sheath encasing the nerve) causing serious physical damage to the nerves themselves. CIDP is extremely rare, and is similar to Multiple Sclerosis and ALS in the way it damages the nerves. About 30% of CIDP patients become wheelchair dependent. |
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balto
839 Posts |
Posted - 03/12/2012 : 05:22:51
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Hi Goodney, lots of people have real damage or defect to their body and blamed those damages/defects as the causes of their pains. I have herniated disc and for a long time I and all my doctors thought that is the cause of my back pain. Lots of back pain patients are wheel chair dependent too.
Now I am pain free for years and I now know herniated disc don't cause pain. Many tms pains were blamed on some damages in our bodies. Like "sliped disc, pinched nerve, herniated disc ... My thought is, if your "disease" is "incurable" then you may as well treat it as if it is tms, you have nothing to loose since it is "incurable". Conventional med haven't find a cure for Chronic Fatigue Syndrome yet, but tms treatment does cure it. |
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tennis tom
USA
4749 Posts |
Posted - 03/12/2012 : 07:26:20
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To Ennio,
It's laudable of you to try to help your relative in the best of TMS "goodist" fashion. From the responses here you can see there is a wide range of what neuropathy can be from structural to TMS, and therein lies the rub. When you "gently mentioned" TMS to your relative and he was not receptive it tells me he may need his malady for protection from the complexities of modern life. In an age of agnosticism and atheism, it's up to the individual to create their own miracles. My belief is if you truly want to get better and the "system" hasn't completely broken your hope yet, you will pursue a "cure" with an open mind, no matter how out-there it may appear. By trying a lot of snake-oils, I've learned to have a better understanding of what may work and what is pure B.S. late-night TV hucksterism. I looked in the index but did't see any mention of neuropathy in Dr. Sarno's, "DIVIDED MIND" but I did an Amazon search of Steven Ray Ozanich's new TMS book "THE GREAT PAIN DECEPTION" and there are several citations for "neuropathy" and "neuroma". You may want to do an Amazon "In Side This Book" search there for some more info from a TMS perspective from someone who overcame it and how.
Good Luck |
Edited by - tennis tom on 03/12/2012 07:30:22 |
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PhilMid
United Kingdom
28 Posts |
Posted - 03/12/2012 : 09:50:26
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Ennio - you are right not to push TMS onto him as you will probably meet resistance.
Maybe look for more subtle approaches like “I saw this video on youtube or did you see that article in the newspaper on how the mind creates pain”. Once the door is opened, maybe he might be more receptive to your suggestions. |
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ennio
28 Posts |
Posted - 03/13/2012 : 10:21:31
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Thanks everybody for the responses. I appreciate it.
Ozanich's book came in the mail last week, but I've only scratched the surface, so I'll definitely check out the index for neuropathy references. |
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tennis tom
USA
4749 Posts |
Posted - 03/13/2012 : 10:32:58
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| Just a note about searching for "neuroapathy" in the index, there's only one citation for it on page 115. When I did an Amazon "Inside this Book" word search I was able to find additional references to neuropathy as well as "neuroma" which is similar if not the same. I've found other nuggets of info doing word searches in Amazon versus TMS book's indexes. I guess it's difficult to have a citation for every word in a books index. I wonder how people who make books decide what goes in an index and what doesn't. It's probably a lot like the IN-N-OUT BURGER secret menu. |
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ennio
28 Posts |
Posted - 03/20/2012 : 11:58:45
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Tom, thanks for letting me know there are other references in the book not mentioned in the index.
A friend of mine published a psychology book about ten years ago, and he was responsible for creating the index himself. Maybe copy editors create the index for a book that will be read by a wider audience or released by a bigger publisher.
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hkp
47 Posts |
Posted - 03/20/2012 : 20:12:07
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Ennio:
Would you be able to report back anything you learn about neuropathy on this thread? I also know someone who is dealing with issues like this, and I'm concerned.
Is neuropathy/CIPD a new thing from a TMS perspective?
Thanks for starting this thread.
hkp |
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ennio
28 Posts |
Posted - 03/20/2012 : 22:10:23
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quote:
Originally posted by hkp
Ennio:
Would you be able to report back anything you learn about neuropathy on this thread? I also know someone who is dealing with issues like this, and I'm concerned.
Is neuropathy/CIPD a new thing from a TMS perspective?
Thanks for starting this thread.
hkp
hkp, I will definitely post again to this thread if I can find any TMS-related information regarding neuropathy and CIPD.
One poster in this thread(Goodney) has CIPD and believes it is not TMS. However, one of my family member's specialists is not convinced that CIPD is the right diagnosis while others think it is.
Sarno doesn't mention neuropathy per se, but he does make reference to numbness and muscle weakness, both of which are, in this case, present to varying degrees of intensity.
It would be great to hear a story of someone who recovered from neuropathy or CIPD through Sarno's education of TMS. I have TMS symptoms, but as an outsider to the specific symptoms mentioned above, it sounds like it would be a candidate for TMS.
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ozagnes
Australia
23 Posts |
Posted - 03/29/2012 : 01:15:20
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Hi Ennio,
I don't have CIDP and I don't know much about it, but I have had some experience with neuropathic pain...
I have had chronic pelvic pain for 3 years, and basically every time I see a different specialist, I get a different diagnosis. PT says I have muscle tension, gynea says I have vestibulitis, urologist says I have IC (which I clearly don't, thank god I refused that diagnosis otherwise I would spend my nights on the toilets...). Then I was told I have pudendal neuralgia, so now it became a nerve problem.
And then I saw a neurologist. Big mistake!!! He found I had hyper-reflexia, so my central nervous system was hypersensitive, it was not a local problem anymore, it was my entire central nervous system, I had Neuropathic pain. I suspect anyone that is anxious or is "on edge" will show increase reflexes...Basically he told me that my pain threshold was higher than normal, that it was a physical neurological problem (of course, no diagnosis can actually measure this), and he put me on Ketamine. I was in hospital for a week, sharing a room with 4 people that all had massive brain surgery, I was high (or I should say low) 24h/24 for 7 days, it was an absolute nightmare.
Needless to say on ketamine the pain decreased (same as after 2 glasses of wine...) but as soon as I stopped it came back.
Then I discovered TMS, I am better although not "cured" yet, I have stopped all medication, particularly the ketamine losanges I was given, told the specialist that originally diagnosed me with pudendal neuralgia who said that "these books (Sarno's) are great and it is fantastic that you respond well to them". And my pain threshold? I don't know, I don't think I ever had a sudden physical disregulation of neurotransmitteurs in my neural synapses causing an increased response to an harmless stimuli (theory behind neuropathic pain).
my conclusion is that specialists see what they know best, and that CAN (although not systematically) include neuralgia and/or neuropathy. I am not saying neuropathy is always TMS, I am just saying you can be diagnosed with neuropathy when the real cause is emotional distress and fear. Unfortunatly it is very difficult to know the real cause of many current illnesses, so I guess it is up to your family member to see clear and follow his gut feeling.
Not sure if this helps, but good luck!
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Goodney
USA
76 Posts |
Posted - 03/29/2012 : 07:12:35
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I began having pain and tingling in my legs and feet a number of years ago. It was definitely aggravated by stress. It came and went. I attributed it to TMS or perhaps some bulging disks in my lumbar spine. In the mid-1990's I had conquered years of chronic back pain after reading HBP by Dr. Sarno.
By early 2009, I was under monstrous amounts of stress, mainly related to difficulties with my business, which continue to this day. At that time I had developed hip and knee pain, and was suffering from terrible insomnia. I also began to suffer with panic attacks for the first time in 20 years. Then in March of 2009, I suffered a neck injury which resulted in terrible pain and headaches, which have continued in spite of the usual variety of treatments. (I am convinced this is TMS, and am only now starting to deal with the fear of my neck symptoms.)
In May of 2009, I was awakened in the middle of the night by electrical shocks shooting down my arms and legs. Those symptoms passed, but within a few days I wound up in the emergency room because my legs were going numb and I thought I was having a stroke. I was diagnosed with herniated disks in both my cervical and lumbar spine. I was referred to a neurosurgeon who luckily did not recommend surgery. I went to physical therapy for my neck, which improved for a little while.
In November of 2009 my left foot went numb and stayed numb. A couple of weeks later, the right foot went numb. I saw a physiatrist who thought the numbness likely due to a lumbar disk. He did EMG/NCV testing and told me I had severe nerve damage in my lower extremities, and to see a neurologist asap. Long story short, after much testing I wound up at the Peripheral Neuropathy Clinic of Weill Cornell Medical College in New York City. I was diagnosed with CIDP and underwent nearly two years of harrowing treatment with intravenous immunoglobulin (IVIG). We stopped the IVIG in January to see if I am in remission. I follow up with my neurologist in NYC next month.
I am convinced that the chronic stress I have been under for a number of years triggered my CIDP. I don't know that I can say it is TMS. I have had my suspicions. Perhaps it is just too hard for me to accept that I have caused myself and those who love me so much suffering.
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drziggles
USA
292 Posts |
Posted - 03/30/2012 : 16:09:31
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| CIDP is absolutely not a manifestation of TMS. Assuming his diagnosis is correct, this approach would not be applicable for him. Now, plenty of people who are given a diagnosis of neuropathy actually have unexplained numbness and tingling that may be TMS, but CIDP is a fairly specific and uncommon problem with specific diagnostic criteria. |
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wrldtrv
666 Posts |
Posted - 03/30/2012 : 17:38:48
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Drziggles,
It sure is good to have a real live neurolgist "keeping things honest" here because I think a lot of misinformation gets spread through the best intentions. I hope you are checking in regularly. Thanks again! |
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Goodney
USA
76 Posts |
Posted - 03/30/2012 : 19:01:50
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drziggles:
Thank you for your input. I was always pretty sure my CIDP wasn't TMS, but because I have struggled with TMS in the past, I always wondered. My CIDP did respond well to the IVIG, though the side-effects were difficult. I am glad that at least at this point, we have suspended the infusions to see if I am in remission.
My physician at Weill Cornell is a renowned expert in CIDP, and has my absolute confidence. He has always been certain of the diagnosis. |
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Neuropathy question
