A couple more questions!

Hi everyone! I'm sorry to be posting so much. It seems I have way too many questions and not enough answers! Everyone has been so great to give me their thoughts and ideas!

1. Like I've said before, my leg hurts only after walking about 20 feet or so. It doesn't hurt at any other time (for the most part). The pain moves around from lower calf, to upper calf (mostly here), to down the back of my upper leg. Its almost like I can gear the pain to a specific area by focusing on that area. However, I always need a focus...so there is very rarely no pain. I guess this is good evidence list, but my fear is of having a disease (MS), I don't know if this pain is NOT a sign a of MS?? The symptoms for this disease vary so widely. So, should my evidence list be "Evidences" that this is not MS? I almost wish I could find something structural in an odd way to relieve my fear of the disease. Strange??

2. I almost hate to bring this one up, but it keeps popping up, and begs an answer. If I were able to see a TMS Specialist Doctor...do they ever say, NO-this is not TMS? I'm just curious. Without doubt there are many people suffering and being healed by this diagnosis and treatment method, but I wonder if they ever say NO...there is something else going on here...not TMS??

 

Hello. I have a few questions for you. Why are you so worried about MS specifically? Is it something that a doctor mentioned to you as a possibility? Have you discussed it with your doctor? Do you know much about MS and have you ever known anyone with MS? And finally, have you ever worried about another potential diagnosis of some other disease?

Here's the reason I am asking these questions. When you are in pain it is a calling that something is wrong. This is a big part of how TMS distracts. I bet everyone on this board has spent time chasing a diagnosis, looking for an answer to resolve the pain. I spent 20 years searching. It was always a moving target because my symptoms would change. I started with a ruptured disc and chronic back pain in my early thirties. I followed all the recommendations of the medical establishment and had back surgery. This did not fix the pain. It would be exhausting for me to go over the long list of diseases I worried about, treatments I had, specialists I consulted with and followed their process for trying to figure out why I was in pain and felt so bad. I also had a very real diagnosis of breast cancer and a mastectomy about 10 years ago. But truly, the answer to my pain was under my nose the whole time. Its not that I was unaware of TMS, its just that for some reason I didn't believe it could actually be what was causing my pain. Sometimes the most obvious is the most profound.
I am not saying you do not have MS, but if you do, go to a good doctor and get it diagnosed. The people I have know with MS have had pretty clear and dramatic signs and it has been something they have had to learn to cope with and manage. And if your doctor does not think you have MS, and you suspect that you might have TMS, then I say dive in to that diagnosis and do everything you can to generate belief and conviction in it. It took me well over a year to struggle through all the doubt, all the reasons it felt like it wasn't TMS. But now I am finally pain free most of the time in a way I didn't even dream was possible. I am not only pain free today, I feel good! I was not seen by a TMS doctor, I worked with a TMS therapist. But these TMS doctors are not quacks. They would not council you to pursue a line of treatment that would be dangerous for you to pursue. I just wish all the doctors I had seen over the last 20 years had a greater awareness of TMS. I am sure they could have recognized the signs in me and saved me a whole lot of money, pain and suffering.

 

Hi Anne,

Thanks for your response. First, I want to clarify that in no way do I think these TMS doctors are "quacks." I truly believe that TMS is real in every sense of the word, and that its diagnosis and subsequent healing is very real for many people. For lack of a better word, the "devil's advocate" in me keeps asking that question, and I thought it worth mentioning. You always hear about those diagnosed, but I've never read anything where they found some other underlying cause.

My other answer is complicated. After going to the ER last fall from having a serious reaction to my first anti-depression medicine, I also had symptoms of tingling in hands/feet, dizziness, foggy thinking, and muscle twitching. So, the ER doctor performed a brain MRI which came back with lesions that were non-specific but in an area where MS lesions are found. So, that day, 10/11/13 to be exact...he said he is diagnosing me with MS. My world crumbled since I had always had an undiagnosed health anxiety, and my worst fear was coming true. Subsequent appointments with two neurologists were more positive. All other tests (lumbar puncture, spine MRIs, vision tests, etc.), came back negative for MS. Unfortunately everyone's symptoms of MS are different, and sometimes it can take years to diagnose. So, one of the neurologists said that he thinks this is anxiety, but said there is a 10% chance of MS. He also said that he will NEVER be able to say that I do not have the disease. The second opinion was more certain in her diagnosis. She said "I do not think this is MS." When asked about the pain in my right leg...she said..."I don't know what that is." So, you would think that would reassure me, and maybe it did briefly. However, as many do, I tend to focus on the negative and "re-play" the bad news. I did make an appt. with a MS specialist at John Hopkins in the spring...the earliest they can see me is late September. I'm hoping and praying that they have more modern ways to diagnose, and can be more definitive with an answer...especially since they specialize in this disease. Also, yes, I do know someone who suffers tremendously with this disease and another person who you would never know has it. Again, their symptoms are totally different.

Again, thanks for sharing your personal story! It is nice to hear that you are pain free and feeling good today. I realize this is a process, but patience has never been a virtue of mine. I am working on an evidence list, and hopeful that I can dive in with both feet to this diagnosis and healing!

 

I hope you can spend less time (no time) worrying that your pain is structural. From the tests so far
it looks very positive that you do not have MS. I suggest doing more TMS thinking and start the
Structured Education Program if you haven't done it yet. Doctors and tests can scare us needlessly.

 

Thank you, Walt! I have begun the SEP, and I'm on day 3! Yes, most people would have probably moved on with their life by now and the thought of MS would be a distant memory. I hope that will be my story in the near future!

 

Thanks for sharing your story. I can very much relate. Those of us with TMS find it much easier to focus on the 10% probability rather than the 90% liklihood. I also think that in doctor speak, 10% is really more like 2%. Doctors tend to be very conservative because they do not ever want to raise false hope and they feel accountable. No one is ever going to blame them if something good happens. Also I have had all of the symptoms you mentioned - "tingling in hands/feet, dizziness, foggy thinking, and muscle twitching." About two years ago I had a lot of numbness in my hands. I had a spasm in my right shoulder/neck muscles and occipital neuralgia. It was unbelievably painful, 24/7 and it never let up. Lots of right sided headaches. I got an MRI shortly after starting to work on the TMS and it showed multiple bulging and a ruptured disc. My physical therapist thought I should get surgery and my primary care doctor referred me to a neurologist. Since I had surgery for my lower back previously and it did not cure the back pain, I was skeptical. But I sure had a hard time getting that structural diagnosis out of my head. Then I had positional vertigo with a lingering movement when I would lie down that lasted for months. I would also get numbness in the side of my face. tongue, front teeth and nose. Very distracting and fear producing! I have made my greatest progress with the help of a Somatic Experiencing therapist. The other day I went in without any pain and as we were working on something the pain in my right shoulder/head came back. She reassured me that it was no cause for alarm and that it would move again. And sure enough it did by the time we were through and when I left I felt really great. Its having these kinds of experiences(finally!) that make it clear without a doubt to me that our mind/body are one, and emotional experiences can create physical sensations that feel completely structural, as though they are an injury or a disease. In order to get here though, I had to make myself believe it is true. It took me longer than most, through despair and lots of unknowns. Creating fear and doubt is easy. Deciding not to be afraid and changing fear and doubt producing thoughts when you are in the middle of having them is extremely difficult. Many, many times I felt that it was impossible.

 

Oh, and is you calf pain like sciatica?

 

Occurs to me that the MS diagnosis is pretty loose; I've known a few people with MS (step-daughter, mother-in-law, friend) but they all had definitive diagnoses. It's good you are diving into the mind/emotion factor and that you have some time to work with your stuff before then. Let the healing begin~!

 

Thanks Anne! I know truly believe in my heart and soul that I do not have this disease, but the fear is still there...and very real. I realize that 10% is very low, but for some reason this girl who has worried about her health for as long as she can remember...can't seem to fully let it go. I know there are several non-disease reasons why people have brain lesions (migraines, aging, traumatic events, etc.), but I still fear the MS. In fact, I've come to realize that throughout my life, a test has always been able to prove my fears wrong...and allowed me to put whatever illness was worrying "to bed." So, I wonder if deep down last year when they offered to do the brain MRI in the ER, that I said "yes" just to prove my fears wrong once again...and stop the worry. The results, however, weren't able to prove anything wrong this time...instead they multiplied my fears. I truly lived as a shell of a person from October to March (when I began taking anxiety medicine). My two boys were really the only thing that kept me going. They needed me, and I needed them.

My therapist asked me today which came first...the fear of MS or the pain. My answer was definitely the fear of MS. She just left it at that...no follow-up question...I found that interesting. I don't know much about Somatic Experience therapy. Is this, by chance, where they make you imagine worse case scenario? I will have to look it up. Last week, my therapist took me through a series of possible outcomes (some worst case), and I think I had mixed results...lots of crying.

My pain in my calf actually moves around. When it first began last fall it would travel from ankle to upper calf. When the orthopedist said nothing was wrong with the ankle...it immediately began hurting in the upper calf--and stayed there for months. Now it currently travels from lateral side of leg in upper calf area, down toward the ankle, and sometimes in to the hamstring. Occasionally, it hurts from the buttocks down...which does make me think of sciatica. However, it never hurts while sitting which is what I read about sciatica...mine only hurts while walking. Overall, the pain normally "parks" in the upper lateral calf area.

Thanks again for your post and sharing your experience. It was helpful and encouraging for me to read! I really appreciate it.

 

Thank you Shirley! Yes, the diagnosis is loose. In fact, according to my neurologist, some doctors would be treating me for MS right now just based on my MRI. That was VERY scary to hear. However, he still wasn't convinced, and gave me the 10% chance. Who knows if he was even right, and looking back, I think that was pretty unfair of him to say that...how does he know what other doctors would say. When he consulted with the other neuros in his group, they agreed with his "probable anxiety" diagnosis.

Yes, although part of me wants the appointment tomorrow, to hopefully find some definitive answers, the other part of me is hopeful, that I can resolve this pain before I even go...since it is my main symptom. I had made that for a goal for myself, but decided that was too high of a demand to place on myself!

Thanks again for your response!

 

Hi. This last response you gave to my previous post I thought was very revealing. I have lived in some form of anxiety and fear most of my life and I really want to encourage you to treat your anxiety and fear first and foremost. You have enough support from doctors and specialists to give yourself some time to do this without any danger. If there are doctors telling you that they think this might be anxiety induced this is very significant. If the MRI lesions were clear cut in any way, you would not be getting this kind of feedback. Believe me, when I had DCIS in my right breast I saw multiple doctors and the choices were - mastectomy, double mastectomy, radiation, tomoxifin(which brings on early menopause)... I opted for a single mastectomy without anything else and I am fine. But if I focused on all of the worst case scenarios I would have no breasts and been thrown into menopause 15 years early with a bunch of unpleasant side effects from the drugs. So take some time to reflect what a good position you are in. Take six months to a year to work on your TMS and even if your worst case scenario of MS is true, you will still be the better for it. Everything you learn in working on your TMS will help you cope with life in general. I work with the elderly and believe me, if we are lucky to live long enough, life throws us curve balls. But I have met lots of wonderful people in their 90's who have survived all kinds of unbelievable things. I never felt like I was brave enough, but what choice do we have? I know that I am now much less fearful than I used to be. I don't mean to minimize your pain in any way, but it easily could be TMS. I think it clearly is.

 

Thank you so much, Anne. I really needed to hear that. In fact, I need to hear it everyday! Can I record your voice saying that over and over? Maybe I will read and re-read...until it sinks in. I have often said I wonder how things might be if someone could just act like they are a doctor and tell me that I 100% don't have MS (without my knowing). This sounds like a joke, but I have seriously wondered about this many times. You are right, I know many people have and currently are surviving the worst. Even with this pain, I am able to function, unlike others I read on this site. I often look around when I'm in public and wonder who out there is in pain, has a disease, etc. I know life moves on. I have lived a very sheltered life, but of my three sisters...I was always the one going to the doctor. From orthopedic shoes as a kid, to mild scoliosis, knee surgery as a teen. Even as an adult, I've had two hernia surgeries and a finger bit off by a dog. So, I have placed this label on myself from early on..."the sick one" or "fragile."

I am currently working on the SEP offered on this web-site. I'm on day 4. So, I hope to continue down this rabbit whole and see where it leads. I know this self discovery is good...no matter what. It was suggested to me, however, to wait until I have seen the MS specialist at Hopkins before seeing a TMS therapist. This person thought I would have more material to work with. I think you are right...I need to focus on the anxiety and FEAR! This fear has plagued me for too long. I know that it is definitely connected to my pain in some regard. Ironically, my pain is higher than normal this evening...

I'm so glad that you made the right choice 10 years ago. How were you able to not focus on worst case scenarios? Any particular things you did, read, watched or (maybe more importantly) didn't do to help you through this?

 

DCIS is sometimes considered a pre-cancer because it is not invasive and only about 30% turns into invasive cancer. Before I made a final decision on my course of treatment, I did a lot of research, visited supports groups, interviewed other survivors and of course saw a few doctors.
I met quite a few women who had gone through chemotherapy and had really been close to death. After surgery and when the doctors came back and told me I was 98% cured, I was elated. I felt I was lucky compared to so many of the women I had met. I did not focus on the 2% and I still do not worry about the increased risk. I am not sure why when I have spent so much of my life worried about potential diseases that I never even had. I still have a great propensity to look for little signs and let my imagination run wild with fear. I used to feel that my life was somehow propelled by anxiety. Its not that I was always in a panic but the pilot light was on and could easily ignite. I felt as though I was always struggling to keep a lid on it. I now know that the struggle was resistance. Instead of fighting to keep the lid on, I needed to take it off and look inside. Its not easy to put into words but when you embrace the anxiety, really sense it in your body and all the physical sensations it is creating, and then accept it, then the anxiety dissipates. As you relax with it, the compulsion to search for scary things to worry about lessons. I am describing my personal experience. I thought the fear was part of who I was. I would often say things like "I have an anxiety disorder" or "I am a hypochondriac." That did nothing but reinforce my fear generating behavior. I started out a year and a half ago by making a conscious decision to keep working on the TMS no matter what, no matter how lost and in doubt I felt, no matter what I was experiencing in terms of pain and anxiety. Anxiety does serve the same purpose as the pain, as a distraction. Just becoming aware of how much you focus on the worst case scenarios is a good first step. The awareness doesn't necessarily change things right away, but it loosens the grip. Pretty soon you'll be able to notice that you are doing it and then decide to think about something else. Its no surprise your pain is higher than normal this evening. That often happens when you are on the right track. Try not to give it too much importance and just keep going.

 

Thank you, Anne. It was very interesting to read about your fear and anxiety. I do the same thing with about saying "I am a hypochondriac." It probably adds fuel to my fire as well. Up until last year, I always have handled my "anxiety" pretty well. I had several friends and family who had been on different medicines for it, but I never needed any. Then my symptoms came on strong (tingling, fogginess, constant worry, etc.), and they gave me Lexapro...which lead me to have a terrible reaction. That is how I ended up in the ER. I tried a few other meds after that, but they all made me feel terrible. So, I stopped trying to take any. Then one friend recommended Buspar (which had been suggested by my psych), and since it was different than all the others, I tried it. It wasn't a miracle worker, but I did see a little bit of improvement...no much. So, about a month later, when my husband was out of town for work, and it was just me and my boys...I tried another Xanax. I had taken a few of these in the fall, but fought it because I knew it was addictive. For the first time in months, I felt a glimmer of my old self back. Right then I knew that if I had to take them for awhile...that is what I would do. My kids needed a mom.

Still today it was not a miracle worker, but I was able to function and "fake it" a lot better than before. My 15 year old son still asked me about a month ago..."when was the last time you laughed?" I'm sobbing as I even type this on the page (reliving that moment). Oh, that hurt tremendously.... I love to laugh, and the truth is...I don't do it a lot anymore. So, I still know there is a long way to go. I have tried to embrace this pain, even tried going without the meds to truly feel this anxiety and fear, but I have had no real breakthrough. You speak of the decision to to keep working on the TMS no matter what. I am almost there. I don't know if I'm waiting until the JH appointment or not, but I do feel a little resistance to dive fully in. I wish I didn't. I know that I only have my boys with me for a short amount of time, and I don't want it to be time spent being sad, afraid, fearful...with no laughter.

 

You will laugh again!! When I first started working on the TMS and it became clear to me that I had lost a lot of the joy in my life, the realization made me feel especially lost and sad. I had right sided occipital neuralgia at that point and my neck and shoulder was in a constant, severe spasms. It has been for 6-8 months with very little relief. I could see the tension in my face and even when I smiled and felt happy, the pain and tension was there. I had stopped seeing my friends and was pretty isolated except for work, my children and husband. I started to make myself do things that in had traditionally made me happy. I would ride my bike through the country side, take walks, drink tea, read a book.... I kept asking myself "how can I be happy when I am in so much pain?" And then I stopped asking myself that question and I just started focusing on things that I knew could make me happy at some point. I tried not to expect them to make me happy in that specific moment. I intuitively knew that was too much to expect. Once I really got better at outcome independence, and stopped monitoring my physical condition more, I started to get little glimpses of happiness and had some success. It was a roller coaster for quite a while though. Now I am getting longer and longer stretches of being pain free and genuinely laughing, and my effortless smile is back. The other day I was at lunch with two good friends I haven't seen in a long time. They both commented on how good I looked and I was able to look at them in the eye and just beam with a big smile(without crying miraculously!). Its not that I physically looked that good, I didn't have much sleep and I am still very overweight, but I felt good from the inside out. And in that moment it felt so wonderful to recognize that and appreciate how far I have come. I think everyone on this board can understand best what that means, what we go through to get here. Just never stop believing that it is possible and if you have doubts, keep going anyway. Its so worth it!! I took Xanax periodically for 20 years. I always carried it in my purse just in case. I would average a few a month and when things got really bad I would take more. I have one and a half Xanax left and I haven't even thought of taking one in over 6 months at least. I didn't have to make a conscious decision to stop taking them, I just didn't feel a need. You can take whatever medication you need as you work on the TMS, as you improve it will be much easier to stop taking it.

 

Thank you again, Anne. Your thoughts and words of encouragement mean so much. You are right...I will laugh again. I have tried to start doing some things that I haven't done in a long while that used to make me happy. For instance, I have remembered my love for country music. This seems weird, because all of my family listens to it, but I have found a song or two that I really enjoy, and just listening to them makes me smile and even want to dance. Years ago, in college, I learned a couple of line dances with a few friends. It was so much fun. I looked up places around here that taught line dancing, but haven't seemed to find any place, and I'm not sure I'm up for the bar scene again. I need to find other things that bring me happiness as well. I have been walking with a couple of friends. My pain is there most of the time, but I often notice that it is much less at the end of this 2-4 mile walk. Objectively thinking, I know that if this were truly a disease or structural cause, this would not happen.

Its so nice when people make a comment like your friends did. Very encouraging! I did have a friend say that she thought I seemed so much better than before...and compared to last winter...things ARE much better. I try to hold on to that compliment. It's maybe hard to see any improvement when you are monitoring it every day. Which brings me to the outcome independence...or in my case outcome dependence. That describes me to a tee! I am very aware of it now, and try to tell myself "I couldn't care less" or sometimes I really get angry about it. It has helped some, but I still have a LONG way to go here. One person has even suggested that I'm addicted to the pain. :/ As far as changing the inside first, I agree that feeling happy and at peace are WAY more important that how you look on the outside. My friend sent me a picture of us taken about a month ago, and I look like I'm ten years older than I am. This year has aged me. Hopefully, with healing and peace, I can start to look my age (or younger) again.

Another question, if you don't mind...when your pain starts to disappear...do you just find that one day you aren't feeling pain anymore, or do you physically feel something relax in your body to allow the oxygen or blood flow to go to these areas of pain? The reason I ask is that on occasion, I will feel kind of like a release in my leg. It's almost like a muscle that has been tightened (subconsciously) has relaxed. It is a great feeling! It doesn't last too long, but when it happens...it's wonderful...and it is quite noticeable.

I'm glad you told me about taking Xanax. My sister assured me that she took Xanax everyday for 2 years when she went through a divorce. It wasn't what she wanted, but she needed it at the time. She said when she stopped taking it...she had a few days of being a little irritable, but overall, it wasn't difficult. I need to just be forgiving to myself for taking it, and allow it to help me through this time. I'm thankful that I have it. Thanks again!!

 

To answer your question, for me, it is a little of both. Sometimes I get so good at outcome independence that it suddenly dawns on me that I am not in pain, and I have no recollection or memory of when it stopped. And then sometimes I am in pain and I feel it relaxing. This is generally when I am feeling pain in my neck and shoulder. When this happens, there is a spaciousness, a sort of vibrating energy that accompanies it. I really like this feeling because I know it is positive and means that pain is leaving. It sounds weird but its almost like I can sense the pure energy behind the pain. Today I had a really stressful day at work and conflict with my husband(we run our business together). On my way home I started to feel pain in my right shoulder, neck and head. At first my thoughts were really negative and I felt so angry and frustrated the pain was there. Then I told myself to just forget it, that it will move again, and I can spend some time exploring how I am feeling. Now its just a few hours later and the pain is gone. So, its not stuck anymore and that is enough for me for now. I think you are doing great and this whole process is going to be very beneficial for you.

 

Thank you, Anne! You have been very helpful. I think I've felt that "vibrating energy" before, as all of the sudden the pain releases. It doesn't stay gone for long, but it is a nice reprieve. I'm glad you were able to forget about the pain, think about your feelings, and it be gone so quickly! That's wonderful. I hope you enjoy your holiday weekend!

 

Keep trying until you find a place to dance! Yoga might be good too with a good teacher. Although I have been healthy for my whole life, and don't consider myself terribly anxiety prone, this conversation is helpful to me and makes me think of my big medical scare in 2006 when abnormal cells were found in my uterus. I did not get a second opinion, it scared me, and I immediately did as the doctor who gave me a complete hysterectomy advised (she bagged another surgery). In retrospect I believe these precancerous cells were a ramification of being in a poor emotional state which I had just tried to resolve by leaving my job, and was in between things. Now I am in a similar situation (considered leaving job), as I've had chronic pain for the first time in my life (along sciatic nerve) and my blood pressure has gone up (used to be low). I feel like I am on the right track now, and had absolutely no doubts about rejecting the recommended surgery at the spine clinic. I believe I need to get to the emotional root of whatever is dogging me or more serious things will bubble up. I'm also doing the structured ed program and aware I want to ramp it up, not make it the last thing on my list for the day. We can all support each other; we deserve to laugh; we deserve to touch the core of whoever we are as individuals and say to ourselves 'I am beautiful'.

 

Everyone in the SEP program can be inspired by this post today from Jacfoti:

Hello I am in the day 4 of the SEP program. I was a Dr. Sarno patient 8 years ago. I met him because of back pain, sciatica could not walk properly, Sarno gave me back my confidence and told me I was stressed and feeling guilty. He also said I am a "goodist".
Back from Italy a month ago I started to feel pain in my back and leg. I also experienced "foot drop"
I totally forgot about Sarno this time.. I dont know why.
I felt like "this time is seriuos".
So I restarted a journey a chiro, osteopath and acupuncture.
Mri came in and showed the same 2 herniations I had 8 years ago.
I said "wait" and re-think everything. Docs wanted me to start cortisone shots, and said "you may lose use of your foot!"
I re-read the book of Sarno and here I am.
Yesterday I went HIKING for 3 hours!
I only have a little numbness in my left foot but it's mostly gone.

Once TMS, always TMS.

cheers,

Jacopo