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Robs MS/TMS Story

Discussion in 'Support Subforum' started by robstahl, May 17, 2015.

  1. robstahl

    robstahl New Member

    Hello fellow TMSer's, I'm new here and wanted to share my story. I'm a 46 year old male who grew up in a family where my mother had MS and my parents were separated/divorced since I was 7.

    I had never worried about getting MS until my early 30s when, I got my first round of pins/needles feelings in my hands and then soon after my legs. Like most of us, I googled and started the roller coaster of fear that has stayed with me. The first thing that comes up when you google pins/needles if of course MS...(now if you type anxiety with pins/needles you get a more realistic result:)) This sent me into intense fear, which made my legs ache, seem uncoordinated and the pins/needles feeling spread. One month later I got my first MRI (I remember so clearly that day, since when I was in the waiting room the episode of West Wing was on...the one where the president found out he had MS) A few days later I got the result and it was clear...INSTANTLY the symptoms went away and for the first time I saw how powerful the mind is over the body.

    About 3 years later, I had the same symptoms, but now it was taken up a notch to involve my pins/needles in my face and the reinforcement of it happening a second time. I wasn't educated in the physical symptoms of anxiety at this point and was besides myself with fear. So to add even more stress, I decided for go the fully monty and see my MOMS DR...talk about a mind f_ck. I was evaluated, tested and had yet another MRI...and was once again clear...symptoms went away.

    I went thru this a few more times and about 6 years ago had another round of it, but needed to take Lexapro to lower my anxiety and thusly making the symptoms/anxiety that caused them go away. This started my education of anxiety caused symptoms, adrenaline and the mystery of the nervous system.

    Fast forward to now...where in the past 6 months ( I have been off Lexapro and do not want to back on) I have been dealing other random hypochondriac issues (head, TMJ, Stomach) and have beat my adrenal glands into submission that my sub-conscience has decided to give me all the scary MS symptoms again. This time I am armed with a bit of CBT therapy and now 3 weeks of TMS therapy (my therapist is awesome).

    Currently, I am struggling with my situation: I have had a clinical review with a top notch Neurologist who found that based on NCV tests I have Tarsel Tunnel in both feet. Based on my history of clean MRIs of my brain and if it was in my spine it would have presented in something significant in the past 13 years, he said that the chance MS was very low. I have seen him twice now and we left it at for piece of mind, he'll write me a prescription for the MRI's.

    I have listened to Dr. Sarnos books on audible and am reading Howard Schubiner, Unlearn your Pain and completely understand and buy into the concept of TMS. I have all the personality traits and have been working on the inner child issues that have come from living with a mother with MS and being a child of divorce. In reality it seems like such a perfect storm that of course its TMS! I am enjoying my therapist sessions and crying so much- it feels like the right time to do this and release my demons...but I still have a feeling (fear) that I should have the MRI to put my mind to ease. For some reason I am terrified of it this time...and feel like if I get one, it its not taking my Neurologist's word for what it is (typical hypochondriac action). I want to move forward and give TMS all my heart and belief, but my fear is making this stand in the way.

    My symptoms:

    - most symptoms are at a level 1.5 - 7 (10 being the worse) but never fully go away- also they vary in intensity/location every 15min - 2 hours

    - pins/ needles everywhere

    - burning, itching on legs and soles of feet (tarsel tunnel)

    - twitch on my left eye that comes and goes

    - occasional tight/tense left shoulder/blade, numb left pinky and ring finger (possible Ulnar Nerve Entrapment)

    - eye pressure, but no pain

    - tight, burning hands sometimes feel clumsy, (but can touch thumb to each digit well)

    - constant warm, tense jittery feeling almost 24/7 (adrenaline- stuck fight/flight)

    - achy legs, tight lower back and warm discomfort down each leg (I have 3 lumbar disc herniations)

    - tense arm muscles that feel weak, but can still lift weights

    - of course racing thoughts

    - randomly producing excess saliva (tongue feels awkward)

    I believe in the TMS concept and that the mind body connection can do all these things, but I guess I havent 100% believed it for my own situation.

    Thank you for your patience in reading this...

  2. mdh157

    mdh157 Well known member

    Welcome Rob.....

    I have abt half your symptoms during the course of a day and a few you don't have, nothing hangs around all day, they come and go. They all look like typical TMS symptoms to me. My mind is putting me through hell. Just keep pressing forward and remind yourself when you get these symptoms that you are safe and there is nothing seriously wrong with you and that it is your mind playing games. It won't be easy but it is necessary to get your mind around what is actually occurring.
  3. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Rob,

    I found that I took all possible medical tests to relieve my mind that it was not physical, that indeed what I had was TMS. That is one approach.

    You have plenty of evidence that you have TMS, both the type of symptoms, and the re-occurring nature of the symptoms, fear, then the release.

    I was so afraid that I had tarsal tunnel that I had three tests done. One nerve conduction, then two more with Dr. Dellon's nerve sensory system. The nerve conduction showed no problems, Dellon's showed "neuropathy and tarsal tunnel." So I was scheduled for nerve release surgery (for the severe foot pain) then took up Dr. Sarno's work. Never looked back.

    Good luck, and keep working on the Sarno approach as best you can!

    Andy B.
    Boston Redsox and Colly like this.
  4. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Hi, Rob. I too was a child of divorce and learned through journaling that it was the cause of my TMS.
    My parents divorced when I was seven and it left me with feelings of abandonment and insecurity.
    I learned by journaling that they had their own TMS pain and that helped me to understand them better.
    That helped me to forgive them, and forgiving made my severe back pain go away.

    No matter what a doctor tells us about the cause of our pain being structural, that often still comes from
    TMS repressed emotions. Keep working in the SEP and you will become free of pain and be happier
    and healthier than you ever imagined being.
  5. robstahl

    robstahl New Member

    Thank you everyone for your thoughtful responses! I am hopeful...I have been reading Unlearn your Pain and felt a bit of a shift after...tension was released throughout my entire body...have a long road but I will get there.
    Thanks again,
    IrishSceptic likes this.
  6. Colly

    Colly Beloved Grand Eagle

    Hi Rob

    Firstly, congratulation on discovering Dr Sarno, and this wonderful forum. Remind yourself you've had all the tests over a number of years so rest assured you are now on the path to TMS recovery.

    I can relate to your situation. My sister was diagnosed with MS when she was seventeen (back in 1994). That same year I emigrated to Australia, and suffered terribly for over twenty years with TMS symptoms, until my discovery of Dr Sarno in 2012. It was difficult enough leaving my family of seven siblings, but added to this was the shock and grief over my sister's diagnosis, and the uncertainty that this meant for her future. My TMS symptoms went wild soon after moving to Australia and I too had to see a neurologist over fears of MS when some of my TMS symptoms presented as numbness in my leg and foot. My neurologist tested my symptoms in his consultation room, so I never went to that next stage of getting an MRI. He concluded that my symptoms were not MS and the numbness went away and never returned.

    My fear of MS was overcome because I did not have a deep-rooted fear of MS brought on since childhood. In your case however, you were witness to the devastating effects of your mother's illness. As a small child you were also affected by the split in your parent's marriage. Losing your mother to MS would have been extremely traumatic, but to also see her primary support - your father - removed from her life would have put enormous pressure on you to step up and become a carer.

    You're doing all the right things now: processing and allowing that grief to be expressed. Now that you have discovered TMS healing, I would encourage you to also work with a TMS therapist, so they can help you erase the ongoing fears you have over your symptoms.

    That relentless high level of internal stress since early childhood has to be unraveled. Your mind is so habituated to high levels of stress that the absence of stress (through reassurance of TMS diagnosis) creates unease. Us TMSers become so addicted to our own stress hormones, adrenaline and cortisol. We get so used to feeding our bodies with fear that the absence of it feels uncomfortable, and brings on more fear!

    There's a great book by Claire Weekes called "Hope and help for your nerves". It's a tiny book but it packs a punch, in that it really explains the impact of the vicious cycle of fear, and its impact on health. In Gabor Mate's book: 'When the Body Says No' he explains: "Cortisol acts on almost every tissue in the body one way or another - from the brain to the immune system, from the bones to the intestines."

    I also encourage you to read Joe Dispenza's 'You Are The Placebo', and also Gabor Mate. Interestingly, both books explore MS with astonishing (and uplifting) discoveries.

    Keep us updated on your progress. When you start monitoring your symptoms go back to the mind. Let those emotions flow, and forgive your Dad also. Try listening to Dr Emmett Miller's CD's each night to soothe your tired nervous system.

    You will get there Rob.
    Last edited: May 24, 2015
  7. robstahl

    robstahl New Member

    Colly what a sweet beautiful message...i so appreciate you taking the time to express yourself. I have a wonderful TMS therapist that is helping me deal with my inner child issues. I never realized the things we are uncovering. I have been listening to "When the Body Says No" since last night and reading a bit "You are the Placebo". My biggest challenge is still my fear of MS and fighting my negative thoughts. I want to accept TMS w/o an MRI and trust my Doctors..but currently I seem to only be stressed and have locked adrenaline. Riding my bike , Breathing and Meditation do help..but I have expectations that things will continue to be good when they are..and get depressed when they hit a low. My Therapist said not to evaluate my days based on how im feeling ...but what I am doing and the enjoyment it gives me. I discovered Claire Weekes years ago and get a lot from her book.
    Thanks again for your message, made me cry - how supportive people can be:)
    linnyc87 likes this.
  8. Colly

    Colly Beloved Grand Eagle

    You’re very welcome Rob, as I say I can completely relate.
    You’ve had a number of MS evaluations with and without MRI’s all showing conclusively that you do NOT have MS. I remember being told the same thing and felt overwhelming relief. You too have felt this and this reassurance has lifted the fear. With no fear, your symptoms vanish.

    You believe the neurologists, but the frightened boy in you remembers living with your mother’s illness. You need to trust completely the neurologists, as they are trained to accurately diagnose this condition.

    Your TMS therapist will help you process the grief and psychological pain of dealing with your mother’s illness. You say you’re locked in fear, but you also understand (from your Claire Weekes research etc) the exorbitant price you pay in your health by holding on to fear. Ellen once said on another thread that fear is like a train approaching the station: you can either hop on board or allow the train to pass.

    You said above that you allowed your “sub-conscious to give you all the scary MS symptoms again”. Rob, your TMS symptoms are mimicking MS symptoms because by doing so it’s got your full attention. Try to be ambivalent about your symptoms. Talk to the pain and tell it to take a hike. I alternated between that approach and feeling self-compassion (not pity). In a self-compassionate state, you speak to the pain as a friend asking it what feelings is it trying to prevent you from feeling.

    Keep reminding yourself you have nothing to fear. Print off Dr Sarno’s 10 daily reminders and stick them on your wall at home. Try to lessen the grip on fear. When you go to bed at night read the 10 reminders again. Hold the hand of the little boy in you that is still fearful, and reassure him he and the adult are fine. Daily affirmations (throughout the day) are essential. Be consciously aware of the level of stress/worry/fear your body is feeling and calm it down with words like “I am fine… I am calm… I am healthy… I am strong… I am grateful” and so on. EFT might be helpful for you as it was for me during a TMS relapse last year.

    If getting the MRI puts your mind at rest then do so, but make a promise to yourself that you then fully embrace TMS healing, because that’s what you have. Allow the grief and sadness to flow in therapy and alone (or with a friend), and don’t be down on yourself for feeling sadness, as you have to process that which has been buried for a long time.
  9. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Great advice from Colly.

    I find yoga deep breathing to be profoundly relaxing. I posted about it elsewhere today but want to share it here as well.

    Nothing is worse than lying awake at night, willing your brain to shut down so you can rest. Warm milk, lavender oil, and counting sheep — we’ve all tried them. But the new solution could be simply learning to breathe.

    The 4-7-8 breathing technique was pioneered Dr. Andrew Weill from Arizona, who describes the yoga-inspired method as “utterly simple, takes almost no time, requires no equipment and can be done anywhere.”

    Dr.Weill claims that 4-7-8 breathing can help people fall asleep in just 60 seconds by acting as a “natural tranquiliser for the nervous system” that reduces stress and tension in the body.

    1. Before you begin, place the tip of your tongue on the roof of your mouth just above your teeth and keep it there throughout the exercise.

    2. Exhale completely through your mouth quite forcefully so you make a “whoosh” sound.

    3. Close your mouth and inhale quietly and softly through your nose for a mental count of four.

    4. Hold your breath and count to seven.

    5. Next, exhale completely through your mouth, making another whoosh sound for eight seconds in one large breath.

    6. Now inhale again and repeat the cycle three times for a total of four breaths.

    After I do these four times I like to do another few while ending by breathng out my nose.
    I find that easier to get to sleep than breathing out through my mouth.
  10. robstahl

    robstahl New Member

    Hey everyone..its been a particular bad couple days...Yesterday I made an appointment to have an MRI for this Friday and all my symptoms are getting worse..especially all the ones that I attribute to MS. Cramps in my arms/legs, tight sloppy hands, all over body burning and a numbish-ness in my left thigh/knee. I'm looking forward to getting a clear bill of health so I can fully embrace TMS..but my mind is making a great case for itself...
    Im trying to ease myself, but i might be white knuckling it till after the MRI is read:(
  11. Colly

    Colly Beloved Grand Eagle

    How did you go Rob?
  12. robstahl

    robstahl New Member

    Colly thank you so much for asking!..Honestly I dont know how I am feeling....My MRI of my brain and cervical spine was read by a radiologist friend of the family and I got an all clear...I was happy ( a bit in shock) but this last week I havnet been feeling great and havent let the fact that its TMS soak in the way I hoped I would. I have a appt with my Neuro tomorrow to get the final review but I feel like my symptoms are worse. Its so hard to not let my fear jade me. I went to a Chinese herbalist/accupunturist to test me for adrenal fatigue since I read some good things about that. I figured I need to boost my system from all the adrenaline damage I've been doing. So I am taking herbs, done a bit of accupunture and eating better. Trying to get 8-10 hours of sleep as well. I did a bit of unfortunate googling to see how conclusive a neg MRI is...that was a mistake and has taken a bit of the wind out of my sails:( I guess Im not doing a great job of accepting TMS right now....
    Thanks again,
  13. Eve2015

    Eve2015 New Member

    Hey Rob,

    I can totally relate to the fear of having a parent's illness--my mother died of brain cancer when she was 43 and I was 7, but she also had MS for years before that, which was part of how they missed an early diagnosis of her brain tumor, though it was inoperable either way. The scariest part for me is that HER mother died when she was 43 and my mom was 10, which gives me a very real fear of dying just like the two of them at the age of 43.

    That said, all of this TMS b*llshit (and I don't mean that I don't believe it, but that I'm ANGRY that it's happening and that, like my mother, it's my BRAIN that is the source of my troubles) has brought up in me lots and lots of awareness of my fears around my mother's illness, but also caused me to look at what I find so horrible about it. For me, the fear is not the cancer itself (I didn't witness the effects of MS so much in her life, as I was so young), but that the cancer trapped her inside of her own body as she died, rendered her powerless. My fear is more of feeling powerless and out of control, and THAT, in turn, causes me to react so strongly when things feel out of control, when I feel like my life isn't going the way I want it to. It's part of why I'm so judgmental of myself, and of others. I MUST BE IN CONTROL, or else...I'll die? It's part of why I really hate breaking down and crying or expressing my feelings, as it feels like losing control, but I've been finding that I feel so much better afterward. So, FOR YOU, what's your deep fear? Why does MS scare you so much? I don't mean that it's not scary, but how is it scary for you, specifically? Maybe that will provide some clues as to why you can't seem to forget about it.

    Also, I would highly recommend the book "The Last Best Cure." In it, the author describes her struggles with her autoimmune disease (among many other symptoms), and how a new doctor in her practice suggested that her physical symptoms may have something to do with her childhood, which, it turned out, was very traumatic. The author then spent a year studying the ways the mind affects the body, while also working to cure her own symptoms (which were HORRIBLE) with meditation, yoga, and acupuncture. She was very, very successful. I know Dr. Sarno discourages physical cures, but the point to me is not that we all need to do yoga and acupuncture, but that we need to find a way to separate ourselves from the meanderings of the mind, and learn to harness it for our own benefit. For myself, I downloaded the audio version of "The Untethered Soul" on YouTube and will be uploading it on my phone, so that I can listen to it while I walk around and commute, which is the time when I usually feel the most pain. I realized that I associate walking and taking the train with feeling pain (hey, that rhymes!), so I want to switch that association so I feel calm and mindful during those moments. That's my own experiment in rewiring my brain, and I have no idea yet how it will go, but it seems like it can't do any harm. Maybe you could find something to do during times that ordinarily cause stress in order to calm your mind down, as it sounds like there are a lot of fear triggers in there. Also, I'm sure you've heard this before (and seen it above), but meditation CHANGED MY LIFE. Seriously. It's worth taking a course if you haven't already.

    I know how you feel in my own way, as I really tend to get lost in my own worries and fears, and I know that we can all find our way through this. We are not doomed to live our parents' diagnoses! "The Last Best Cure" makes clear that it is our STRESS and FEAR of repeating their illnesses that brings on our own illnesses (or the feelings of illness), or, in actuality, it is our rejection of those scary feelings that causes it to manifest elsewhere in the body. You have found this forum, and it sounds like you have found a great therapist. You're doing awesome. You're giving it hell. You're hanging in there! Remember to give yourself credit for doing your best, and for not giving up. You can do this.

    All the best,
    laradara, jtperks and Ellen like this.
  14. jtperks

    jtperks Peer Supporter

    Great post Eve, and hang in there Rob! You've got the testing done that assures you that you don't have some horrible disease. And I believe that's the way you can TRULY get to 100% belief that this is TMS. And once you get there, you'll get to a place where what you're feeling won't bother you, because what you're feeling won't represent anything.

    I listen to meditation tapes by Dr Emmitt Miller. He says something in there, that you have to accept the fact that what you're feeling "just is". It's just a feeling, and it's nothing more. The same way that 2+2=4. It just is, and we move on. That's what I work on, just trying to accept things for what they are, don't put any more thought into them, and just keep going.

    And you don't waste your time thinking about what the wierd neuro symptoms represent, because testing has told you they mean nothing.
    Last edited: Jun 12, 2015
  15. laradara

    laradara New Member

    I, too, have struggled with the "symptoms of MS" over the years. Symptoms started out as dizziness, lack of coordination/proprioception, etc...I had been in an auto accident, & two neurologists believed that the symptoms resulted from that wreck, so they diagnosed me with post-concussive syndrome, which is pretty scary. I don't know whether that was true or not (I accepted it), but it's hard to believe the symptoms would continue to recur after all these years. And they do. For the most part, I have felt pretty good (unless I "overdo" it), but lately the symptoms have returned, with a particular emphasis on muscle weakness/clumsiness/lack of coordination. I believe BIG TIME in Dr. Sarno's TMS theory, but for some reason, I sometimes slide back into doubt & unbelief, and worry that "this time" it's something worse. The dizziness/uncoordinated feeling really scare me. What do you guys think?

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