| T O P I C R E V I E W |
| richedie |
Posted - 05/20/2008 : 12:08:08
Sorry this is long.
Hi everyone, I wanted to give the full list of history on my symptoms and see what the experienced people here believe could be the problem. Currently I am reading Sarno's The Divided Mind.
First, growing up, my mother was very strict about a lot of things, even keeping my room incredibly clean, polishing furniture, LOL - you name it. Parents were very strict as far as who we could play with, etc. It was hard on me at times if I wasn't always clean and neatly dressed. My hobies were critisized so I ended up hiding a lot, such as my guitars, and anything else I liked. I switched from skiing to snowboaridng and that was critisized, job choices, etc. I definitely was a perfectionist as a child and still am although my wife has helped loosen me a bit. My brother and I were never as close as I would have liked and sometimes seems to be a wall between us. I have had problems being able to talk about sensitive topics with my family growing up. I alway felt inferior to people, and I attended a high school of which the population was 90% kids from well to do families and we were not. we were your average working class family. I lacked a lot of confidence and was painfully shy, and my parents always pointed this out. I was told I was scared of my own shadow as a child. Talking to girls/woman was hell! Confidence was lacking. I know I now have some OCD.
Now, I am a system engineer, am married and have one child. My wife and I have had some tough times and there are still some major issues due to my inability to communicate, especially negative feelings or anything that I may have done wrong? Hard to esplain. I tend to keep things locked up inside!
I obsess over so many things. I play guitar and obsess over the instruments, the gear, always have to have the best gear or what I consider perfect to me. I obsess over a lot of things! I'll run things through my head forever. I am also indecisive.
I have never loved my job, and always felt I should have done something in medicine, nutriton, therapy, exercise, etc. My dream is a coffee house.
I have always been very active, lifting weights, running, skiiing, snowboareing, biking, hiking so it was strange when I felt like I was falling apart this past 8 months. I'll document below but WOULD LOVE SOME INPUT! Thanks!
2003:
- Hurt lower back in gym and as a result had occasional lower back pain for a number of years following injury.
2005:
- Separated right shoulder (AC joint) and had reconstructive surgery.
2007:
Last Week in September:
Lake Placid, NY – Hiking biking, in and around the lake, Marsh lands, etc.
10/2/07 – Ulnar nerve entrapment surgery on left elbow.
10/17/07 – Start of serious symptoms listed below.
- Pins and needles began in right foot, started in the arch of the foot then spread to entire foot, led to pain in ball of foot and caused me to limp. Tingling also began in the left foot but to a much lesser extent. Taking long walks was difficult, numbness in toes, feelings of cold and pain along the bottom of the foot. After a workout, my right foot could shake and be hard to control.
- Nausea, loss of appetite
- Woke up a few nights with either my left leg numb from the knee down and also an extremely painful right knee which took a minute to loosen up to where I could walk. I also experienced a few days where I was shaky and tingly from the knees down and coordination was not as good. Also, tremors and shakes in one hand or the other and would wake up at night with tremors and sometimes muscle twitching, feeling cold as if I had a fever.
- Frequent urination was a problem for a while, cold toes, feet and occasional cold hands as well were common. Sometimes vibrating feelings could felt in the feet. Also woke up a few nights with the back of my scalp numb.
- Episode of right eye problems, including Episcleritis, pressure in right eye.
- Some nights the pain in my right foot was so bad, I could not sleep, I started seeing floaters in right eye but Ophthalmologist rules out any problem. I spent a lot of time limping due to pain in ball of right foot and sometimes both feet, including the heels.
- Fluctuating temperature, up and down.
12/19 – update:
- Some pins and needles in feet, vibrations, cold shots, some pain in ball of foot and periodically other parts of feet (predominantly right foot). Long walks yield prickly feeling in bottom of feet and cold, numb toes, and sometimes the bottom of the foot, mostly right foot.
- Occasional twinges and pain in lower back and mid back pain. A few nights the pain in my Thoracic region was bad enough to keep me awake.
- Left wrist is sore and sometimes pain in the palm of the left hand.
- Notice my temperature is typically around 97.5 which seem low. Thyroid problem?
- Nerve pain, Joint pain, Muscle pain? Difficult to distinguish.
- I can sometimes cause feet to go numb by stretching on the floor.
- Sometimes pain in right hip
- Deep pain at times in lower right leg.
- Right ankle feels weak and sore at times.
- Sometimes numbness down back of leg and feet after sitting.
- Heart murmur?
- Cognitive issues
Hot-spots?
- Painful spot on right wrist.
- Painful spot on right hip.
- Painful spots on my knees
01/05 – update:
- Right foot cold at times. Sharp pains in ball of foot when walking.
- Pain in calf, knee and hip and a little in tail bone
- Slightly sore low back or sacrum.
- After sitting, can have numbness down back of legs.
- CT found 3 mm aneurysm of the proximal supraclinoid right internal Carotid artery.
- Blood work detected abnormal IGG Kappa Monoclonial band.
- Some shortness of breath
- Buzzing sensation in feet and fingers.
- Some nausea
- Weight loss
- Problems with balance
02/25 – update:
- EMG, NCV tests are normal.
04/07 – update:
- Lots of pain in my left wrist, hand and forearm. Using a splint. (Carpal Tunnel?)
- swallowing has not been an issue lately although it feels like some pills get caught in my throat.
- sore calf muscles and the rare burning and weakness in arms and legs. Every now and then, arms or legs can feel weak and shaky although strength always measures fine.
- Currently the Podiatrist and Neurologist feel it could be severely high arches tat are collapsing and carpal tunnel. Anything else could be anxiety.
05/02 –
- Pain in sole of feet, pain in toes, some tingling, but is better with Neurontin.
- Pain that had started in wrist has progressed to pain in hand and forearm, and shoulders. Left hand also is a darker color than the left.
- Nausea at times.
- Occasional feelings of week limbs, vibrating sensations.
- Hands can feel cold.
- Blue-ish color to left hand
- Vasculitus?
- Blurry vision at times
STILL no answer from countless doctors other than high arches, normal floaters in eye and pain in left hand/wrist from repetitive use. Ugh!
Thoughts everyone?
I am tempted to see a Dr. Cohen in PA not far from us but it is expensive and I have spent a ton of medical equipment and doctors, co-pays, etc, because our health insurance has been getting worse.
Thanks.
Thank you!
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| 20 L A T E S T R E P L I E S (Newest First) |
| richedie |
Posted - 12/12/2008 : 14:39:38
Hi all, what about some other symptoms I have. I started to notice ringing in my right ear and then I had some loss of hearing, blurry/double vision as well. A scarier symtom is the inflammation of my left arm! It can swell so much I can't remove my wedding ring and with all my recent weight loss, that falls off in the shower normally! My temperature drops to 95-96 at times and my hands and feet will turn purple or mottled looking. Finally, I still have the MGUS or IgG antibody spike that the oncologist says most likely is caused by an underlying infection they can't find. I never had any of this till last fall.
One interesting note is I had some blood testing for Borrelia and Babesia infection. The Babesia test was a FISH test and that cam back positive. I talked to some scientists who said it is extremely rare to see a false positive with this highly sensitive test, but luckily they think I have a strain that was able to be detected this way. After 6 months of Babesia treatment the symptoms attributed to that went away like the trouble swallowing, air hunger, chills and shakes, nausea and I get my follow up test for this next month and hope it is negative!
I think we'd be ignorant to not believe chronic infections exist just as we would be to not believe in TMS. They both exist but it is so tough differentiating the two at times!
What if people had believed syphilis or malaria was fake, LOL.
Thanks. |
| richedie |
Posted - 08/08/2008 : 08:31:17
I would still love to know if TMS can cause blood flow restrictions in the extremities and if it can cause your hands and fet to look mottled and dark/sick looking. |
| richedie |
Posted - 07/15/2008 : 09:07:23
So the MSSA was basically nothing...just took some topical abx.
However, I recently got back some Lyme blood tests that were positive and my blood was sent to a better lab in california. Believe me, i want this to be TMS, but I have too many visible things going on that make it hard to believe. My hands and feet still turn dark red or blue no matter the temperature. It seems to be a vascular thing because I can get my hand back to normal color by holding it above my head and the mottling goes away, but still aches and feels tight. The pain is now in my shoulder and arm in general and the shoulder cracks and creaks now, never did that before!
To top it all off, I think something happened to my elbow. I had that ulnar entrapment surgery back in October. Well, I was working out the other day and I felt a pain in my elbow. Now the pain is always there when I bend my elbow. The pain comes right at about the 45 degree point and I can now feel the nerve or something moving over the bone when I move the joint. You can even see it jump right when it hurts. |
| richedie |
Posted - 07/09/2008 : 09:06:24
quote:
Originally posted by positivevibes
So, your blood test shows that you have high levels of MSSA (Methicillin-Sensitive Staphylococcus Aureus). Will this be treated with antibiotics?
Sounds like at least SOME of your problems do have an actual physical cause. What sorts of maladies could MSSA cause in your body, if it has been unchecked for a period of time? Could it be causing some of these problems? The mass in your shoulder -- could it be scar tissue from your surgery or calcium deposits, or even something that was left in your body after surgery like a sponge or something (don't laugh, it has happened!) Have you had your shoulder x-rayed or MRI'd do see what in the world that mass could be? Maybe it's just a knotted up muscle -- or maybe not.
From the way you speak about your perfectionism, etc you do have a bunch of TMS personality traits, and TMS and stress might very well be contributing to some of your problems.
However, IMO you should try to solve some of these problems with MDs before attibuting them all to TMS. I really don't think that TMS could make your hand turn blue and blotchy. And TMS wouldn't give you spike in blood proteins, or give you floaters. As for MGUS or Lyme, I don't know anything about that, but only a qualified doctor could tell you for sure. You mentioned that they found a 3 mm aneurysm of the proximal supraclinoid right internal Carotid artery on a CT scan. How does that tie into any of this? Is it significant or insignificant?
My cousin had Lyme disease when he was a child and he almost died. Now as an adult I know he has some health issues because of having had Lyme.
Regarding floaters -- several years ago I was continually sick with Strep Throat. My kids kept passing it around to me (it went on for MONTHS until one of my kids was put on the right antibiotic to knock it out of her system, because she was the carrier). Well anyway, after months of being sick on and off with Strep I got "cotton wool spots" in my eyes. (Not sure if that's the same as floaters). I'd never had them before and I was sure that my continual infection and continual flow of antibiotics had SOMETHING to do with it. After I was finally cured of the Strep the spots went away I've never had them since. So -- I suppose it's possible that an infection can cause problems in your eyes, even if the problems are not serious.
Anyway, I think that no matter what it will benefit you to read Dr. Sarno's books, because they have a lot of good information and may help you to feel better about things.
I really hope you find the answers to your problems, and if it is indeed an infection or some sort of blood disorder I hope you can cure it or control it easily, and get back to living a normal life again. Please keep us posted on what you find out!
**********
You are not your mind; you are not your thoughts. The incessant mental noise [of your thoughts] creates a false mind-made self that causes fear and suffering and prevents you from connecting with your true self and living in the Now. - Eckhart Tolle, The Power of Now
They said there isn't much to do about the MSSA other than some topical abx for my nose. I am done with it so I assume it cleared up.
I have seen the Ophalmologist and he confirmed I have way more floaters than the average person. My hand still turns color and blotchy and the right one is now starting to do this. My feet and toes are also starting to turn color and blotchy, almost dead looking at times. I just can't see TMS doing this. Maybe TMS contributes but I don't think it is the root cause. |
| positivevibes |
Posted - 06/29/2008 : 20:40:39
So, your blood test shows that you have high levels of MSSA (Methicillin-Sensitive Staphylococcus Aureus). Will this be treated with antibiotics?
Sounds like at least SOME of your problems do have an actual physical cause. What sorts of maladies could MSSA cause in your body, if it has been unchecked for a period of time? Could it be causing some of these problems? The mass in your shoulder -- could it be scar tissue from your surgery or calcium deposits, or even something that was left in your body after surgery like a sponge or something (don't laugh, it has happened!) Have you had your shoulder x-rayed or MRI'd do see what in the world that mass could be? Maybe it's just a knotted up muscle -- or maybe not.
From the way you speak about your perfectionism, etc you do have a bunch of TMS personality traits, and TMS and stress might very well be contributing to some of your problems.
However, IMO you should try to solve some of these problems with MDs before attibuting them all to TMS. I really don't think that TMS could make your hand turn blue and blotchy. And TMS wouldn't give you spike in blood proteins, or give you floaters. As for MGUS or Lyme, I don't know anything about that, but only a qualified doctor could tell you for sure. You mentioned that they found a 3 mm aneurysm of the proximal supraclinoid right internal Carotid artery on a CT scan. How does that tie into any of this? Is it significant or insignificant?
My cousin had Lyme disease when he was a child and he almost died. Now as an adult I know he has some health issues because of having had Lyme.
Regarding floaters -- several years ago I was continually sick with Strep Throat. My kids kept passing it around to me (it went on for MONTHS until one of my kids was put on the right antibiotic to knock it out of her system, because she was the carrier). Well anyway, after months of being sick on and off with Strep I got "cotton wool spots" in my eyes. (Not sure if that's the same as floaters). I'd never had them before and I was sure that my continual infection and continual flow of antibiotics had SOMETHING to do with it. After I was finally cured of the Strep the spots went away I've never had them since. So -- I suppose it's possible that an infection can cause problems in your eyes, even if the problems are not serious.
Anyway, I think that no matter what it will benefit you to read Dr. Sarno's books, because they have a lot of good information and may help you to feel better about things.
I really hope you find the answers to your problems, and if it is indeed an infection or some sort of blood disorder I hope you can cure it or control it easily, and get back to living a normal life again. Please keep us posted on what you find out!
**********
You are not your mind; you are not your thoughts. The incessant mental noise [of your thoughts] creates a false mind-made self that causes fear and suffering and prevents you from connecting with your true self and living in the Now. - Eckhart Tolle, The Power of Now |
| stanfr |
Posted - 06/29/2008 : 19:32:53
Richedie: I would not get too hung up on 'TMS' as a precise syndrome. TMS started out as a theory dealing primarily with back pain, mainly disc herniations and bulges. For better or worse, it's been expanded by Sarno and others to encompass a whole range of symptoms that may or may not be properly described by the TMS theory--but as those of us who have suffered from 'classic' TMS as well as a host of other conditions can attest: mind-body is a much, much broader subject. So , you may want to consider the possibility that even if these other things aren't 'TMS' in the classic sense, your psyche could be having a huge influence over them. For example, I've had deteriorating eyesight and excessive floaters for decades. They're much worse (eyesight and floaters) on the right side of my body, as is a host of other symptoms that ive dealt with over the years. Are they all "TMS"? Who can say, but i'd bet a large sum of money they are profoundly influenced by mind-body and partly if not wholly psychosomatic. As has been mentioned, probably the greatest influence on how much my floaters bother me is a factor of how much attention i pay to them, and that is part of a cycle that perpetuates due to the psyche's influence. Stress/anxiety itself can result in real physical problems, some problems that are not easily resolved by journaling or following a TMS treatment plan. Since as you probably know, the medical profession isn't about to offer you a magic bullet, the best thing you can do is come to the firm realization that you are going to be you're own best cure, not any antibiotics, diet, or medical intervention. It's changing your thought-process and making changes in your life that are going to be the most beneficial things you can do. It's a tough daily struggle, but this forum points out you are not alone in it. |
| mjwebb05 |
Posted - 06/28/2008 : 18:45:30
Richedie,
If you do go to see Dr. Cohen, would you be willing to let us know what he charges for a visit? I live very close to his office and was considering going to see him...
Thanks! |
| armchairlinguist |
Posted - 06/27/2008 : 08:54:30
quote:
My Myofascial release specialist found a huge mass of muscle/fascia above my left shoulder blade and I can easily feel it as well. She thinks this could be causing a restriction, hence the color and pain in that hand. it is very noticable...almost feels like a hard muscle or bone! She says it could have something to do with me having AC joint reconstruction on my oposite or right shoulder two years ago and being unbalanced now. I know my gate is off, I have arch issues and my right leg falls to the right when I lay down on my back so maybe a lot of this is mechanical?
For the issues of gait & arches, please remember that the practitioners you have seen are structurally trained. They will likely attribute pain to any "abnormality". Likely there are lots of people walking around with the name "abnormality" and no pain.
Hard lumps of muscle that feel like bone can often be from tension ("tension myositis syndrome"!). I am suspicious whenever practitioners talk about being "unbalanced". Are we really that unbalanced, and does it even matter? They don't really know.
Your hand sx sound like something else to me, so I will not comment on that. Just wanted to note that you are still 'thinking physical' on many points, including many that have the hallmarks of TMS symptoms.
--
It's not 100% belief that's required, but 100% commitment. |
| simplyfree |
Posted - 06/26/2008 : 18:58:41
Richedie,
Here's are a few links you might want to explore:
http://curezone.com/forums/fm.asp?i=268034#i
http://health.nytimes.com/health/guides/symptoms/vision-problems/overview.html
Probably things you have checked into before. The condition of your hand/arm is what would concern me more.
Take care. |
| richedie |
Posted - 06/26/2008 : 12:26:18
Hey all and thanks for caring and chatting.
I got a test back saying i have high levels of MSSA. I had surgery when all my symptoms started back in october. maybe I picked this up in surgery? Wish I knew the answer. My neighbor had MRSA and was hospitalized before intravenous abx got him well.
My floaters started with my other symptoms in October. Some are small dots, some web like, some blobs, some look like cells, most are dark or black but some are clear or opaque, and all of them move and float. Sometimes there are huge clusters and webs as I look to the sky. My wife and i sat outside last night and I noticed if I look at anything dark, it looks like it is snowing.
My hand has gotten bad, red, blue sometimes, blotchy, swollen. Can this all be TMS? One thing notable. My Myofascial release specialist found a huge mass of muscle/fascia above my left shoulder blade and I can easily feel it as well. She thinks this could be causing a restriction, hence the color and pain in that hand. it is very noticable...almost feels like a hard muscle or bone! She says it could have something to do with me having AC joint reconstruction on my oposite or right shoulder two years ago and being unbalanced now. I know my gate is off, I have arch issues and my right leg falls to the right when I lay down on my back so maybe a lot of this is mechanical? |
| mk6283 |
Posted - 06/18/2008 : 11:18:32
I'd say seeing a TMS doctor is probably a good idea. In the meantime, try not to worry so much. No matter what the cause of your symptoms is, at the least there still seems to be some psychological overlay. Picking up meditation or some other relaxation technique may not be a bad idea. Let us know how it goes with the doctor. Good luck buddy!
Best,
MK |
| richedie |
Posted - 06/18/2008 : 09:42:13
MK, I don't want to argue about Lyme, you are a good person so lets move on. I know what you are talking about with those studies, but they were very faulty. Just some basic understanding of the life of bacteria, and real world evidence is proof for me. I think just basic understanding of biology and bacteria is enough to show you how it can take a long, long time to eradicate. and I have a friend from Baltimore who did not get well till she took abx for over two years for Lyme. Now, she has been symptom free for 4 years. It took them months to determine which abx would work. show me those studies, I can explain how they are wrong. Anyway, don't want to argue.
I guess it makes it hard for me to believe I have TMS because of the MGUS(protein spike in blood that was found this year after all this started) and the fact that my left hand not only hurts but gets blotchy and blue, purple, etc. Does that sound like TMS?
If all else fails, I will see this TMS doctor in Lancaster, PA.
Rich |
| richedie |
Posted - 06/18/2008 : 09:36:47
MK, I don't want to argue about Lyme, you are a good person so lets move on.
I guess it makes it hard for me to believe I have TMS because of the MGUS(protein spike in blood that was found this year after all this started) and the fact that my left hand not only hurts but gets blotchy and blue, purple, etc. Does that sound like TMS?
If all else fails, I will see this TMS doctor in Lancaster, PA.
Rich |
| mk6283 |
Posted - 06/04/2008 : 23:42:43
quote:
Originally posted by richedie
I have a relative wh had it for 7 years before finding the right doctor and medication. Now, she is actually off all meds and doing very well.
I have a relative who swears by homeopathic medicine. It breaks my heart to tell him that he's taking sugar pills (not that there's anything wrong with that). There is, however, something very wrong with taking long courses of unnecessary antibiotics. Some very well reputed evidence-based studies have shown that chronic Lyme is essentially nonexistent. The intensive courses of antibiotics are only harmful. Not to mention all the NSAIDs and other stuff these patients are consuming. The first step towards proper treatment is a correct diagnosis. Remember, even if someone gets better after seeing a doctor and taking a medication, it still doesn't prove anything. Many people get better after seeing a shaman (again, not that there's anything wrong with that). Sorry if I came across the wrong way. Good luck!
Best,
MK |
| Susie |
Posted - 06/04/2008 : 21:02:47
Richie, I can only speak for myself but I have become very familiar with my floaters. You probably have too. If you have a major change, I'll bet you know it. It sounds like you have done your due dilligence and you seem to be fine, eye wise. |
| richedie |
Posted - 06/04/2008 : 20:41:24
Chronic Lyme is not bogus, that is an arrogant and ignorant, childish thing to say. I wish that were true. Things are not that black and white in life. Anyway, I could say the same about TMS. See how that works? I have a relative wh had it for 7 years before finding the right doctor and medication. Now, she is actually off all meds and doing very well. Great in fact.
Anyway, enough of that....
I did have my eyes checked along with the dilation. I always have floaters so how do I know if I have new floaters? 
I feel my case is so complicated because I have the abnormal protein spike in the blood and the hand changing to a blotchy, almost blue color. |
| mk6283 |
Posted - 06/03/2008 : 19:36:29
Enough with Lyme testing!!! Chronic Lyme is total bogus.
Best,
MK |
| Susie |
Posted - 06/03/2008 : 14:50:27
Richie, Since I am always sure that everything that befalls me is tms, I asked the retinal surgeon if they could possibly be caused by stress. He assured me that it was not not possible. The more you look and pay attention to the floaters, the more they will drive you nuts. They will fade and become less apparent with time. They usually appear as clouds or black spots. If you have already been checked out, I wouldn't worry about them. Just be sure that your checkup included dialating your eyes. My optomitrist originally gave me a checkup without dialation and totally missed the detachment. After complaining for a week, she did the dialation and sent me to the surgeon the next day. The floaters usually come with age but everyone is different. I ,too, was younger than most, but I have a friend in her 20's that had a detachment in each eye. BTW, my other eye had a vitrious detachment the next year. No retinal problems but I have to keep getting checkups. They told me if you have a vitrious detachment in one eye, the other usually does the same within 18 months. If you get new floaters be sure to have your eyes checked. |
| hottm8oh |
Posted - 06/03/2008 : 14:29:40
Richie, can you describe the floaters in more detail? What do they look like? Are they black or white/clear/silver-ish? Do they move or take on other forms? Do they come with a headache? I occasionally experience floaters that are white, clear, or silver and they have kind of a wavy quality to them. They move across my field of vision. One of my coworkers had the same thing, and we were both diagnosed with ocular migraines. My floaters did not come with a migraine so I never considered it to be headache related, but I've since spoken to many other migraine sufferers who describe the same exact vision issues.
Incidentally, migraines are a TMS symptom. |
| richedie |
Posted - 06/03/2008 : 12:44:41
quote:
Originally posted by Susie
Richedie, eye floaters are a sign of vitrious detachment in your eye.Almost everyone eventually experiences these at some point in their life as they age. The vitrious, the gel inside youe eye, begins to detatch from the retina at the back of your eye. Most are harmless but as the vitrious detatches , it can pull at the retina, causing a tear or retinal detatchment. This is very serious and requires immediate attention. Flashes of light, along with the floater, are a good sign of a possible detachment. I was the lucky recipient of one, hense, the abundence of info. Go to an opthamalogist and have your eyes dialated. They can easily see if you have any retinal involvement. Google floaters and you can read a complete explaination. If your retina is ok, just ignore them. My eyes , after the surgery, look like I have a bunch of amoebas floating around. This is not tms.
Thanks, I know how floaters come to be and have researched them but my optholmologist(who I have seen three times now) said I have way more than most people and at a pretty young age. Keep in mind, all my symtoms began in the fall along with the floaters. Coincidence? If I can save up the cash, I may go see this TMS specialist in Lancaster PA. Unfortunatly most specialists I have been seeing do not take insurance.
Some of the doctors feel I have some form of infection but they can't find it yet, so I am spending big bucks for expensive Lyme testing. My parents are helping though. I almost feel it will difficult to fully accept the TMS unless I go through these other tests and treatments to rule everything out.
And..what about the MGUS? After being on message boards a lot of people with MGUS have symtoms of pain and tingling. However, my numbers are very low, so I don't know. My quality of life and mental condition has declined as a result of my symptoms. |
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