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jczarkowski1270
@jczarkowski1270

Posts: 25
Joined: Jan 27, 2017

Dizziness for over 2 years.

Posted by @jczarkowski1270, Sat, Apr 21 8:39am

Fortunately, cleared from a bout of neuropathy for over two years. Now coping with dizziness, had CT & MRI to head, cleared. As formerly, researching neurology of dizziness. My CT was validated by second opinion neurologist. Fortunately, my initial physician did the most comprehensive evaluation and treatment, others not so good. My dizziness, luckily does not affect my driving, which would tax my independence and research. I am sensing a proprioceptive type of dizziness. Many medical professions have a poor concept of types of dizziness. I doubt if I have BPPV, since my dizziness is not related to position changes. I am now searching for the side effects of Norvas(dizziness for older clients).

REPLY

I suffered from being dizzy every morning for about two hours in the morning which my opthomologist thought was coming from the eye drops that successfully treats the progression of glaucoma. When my primary doctor moved to a new, inconvenient location her replacement suggested I stop the Lomotrol (sp) for hypertension (but continue to take Atenolol) and if my blood pressure spiked he would suggested taking another drug. Three days later the dizziness disappeared and has not returned. I am substituting beet juice instead of another medication with the result that my blood pressure remains in normal range. I am very sympathetic because I know how disconcerting that dizziness can be.

Hi: I also have lightheadedness and I staggered when I walk. This has been going on for 5 years now. I had 3 Station Tubes in my right ear and finally had a Balloon inserted into my right ear. That did not stop my symptoms at all. I do have fluid in both of my Mastoids but I was told that has nothing to do with my staggering and lightheadedness. I still do not have an answer but I am a patient at the Mayo Clinic, I hope they can figure this out soon

I have a lot of health issues do to elemental toxicity poisoning by inhalation while working at a Biotech Co. 2010-2011. All the symptoms started immediately but I was told by the Chief medical officer that mercury poisoning was just a myth, so I never thought about it again until July 1, 2016 when it was confirmed. During the past 8 plus years, I have gotten worse but at the moment I have severe vertigo and orthostatic hypotension together. I can handle one or the other just not both at the same time. I believe that SNF small nerve fiber neuropathy is finally going crazyin my head. I just had an MRI. Because I have 2 screws on the right side and 3 screws on the left side holding my jaws together due to TMJ, the MRI was unable to see what it needs to see. Of course my Neurologist is on vacation. I truly believe I have MSA-c due to evidence from prior MRIs showing problems with my cerebellum and basal ganglia, side effects of either not being able to urinate which caused a very bad bladder infection or having to urinate with severe urgency. I have gastroperisis, lemmel's syndrome, 3 large periampullary diverticula doudenums pressing on my ampulla of vatar which makes having a bowel movement almost impossible. Luckily I have chronic diarrhea because none of my sphinchters work and my anal sphincter is the size of 5mm x 10mm with a hard stenosis, so if feces is larger than a small grape, I have to move it aside for the diarrhea to pass. I have trigeminal neuralgia, migraine headaches, daily headaches, every type of headache, my hands do not work at all and that is after having carpal tunnel surgery for both. My neck and lower back both have severe DDD, my neck needs surgery. I will say one good thing, the 10mcg/hour Butrans patch has stopped my nighttime neuropathy paun completely. My fingers still swell but I'm able to sleep. And even if I have insomnia, I do not have nighttime neuralgia. 8 years to find something to fix that! I still get shooting pains from my feet during the day. Oh, and I was just told that my ECG came back abnormal, so I will be seeing my cardiologist tomorrow. It would be nice to have one good day of no pain of any kind. And one doctor who could help with all of my problems. I see myself in a wheelchair very soon. More than half the time, my legs are completely numb from my knees down. These are just 10% of my medical problems, ugh! Thanks for listening. And now the time to get up and get dressed so my husband can take me shopping to buy groceries for my wonderful 27 year old schitzophrenic son. My son and I used to do this together for a fun outing, but I cannot drive anymore. Unable to eat any type of healthy food and to nauseated to want to eat, my weight is down to 100 pounds. Not good

@krissylamb

I have a lot of health issues do to elemental toxicity poisoning by inhalation while working at a Biotech Co. 2010-2011. All the symptoms started immediately but I was told by the Chief medical officer that mercury poisoning was just a myth, so I never thought about it again until July 1, 2016 when it was confirmed. During the past 8 plus years, I have gotten worse but at the moment I have severe vertigo and orthostatic hypotension together. I can handle one or the other just not both at the same time. I believe that SNF small nerve fiber neuropathy is finally going crazyin my head. I just had an MRI. Because I have 2 screws on the right side and 3 screws on the left side holding my jaws together due to TMJ, the MRI was unable to see what it needs to see. Of course my Neurologist is on vacation. I truly believe I have MSA-c due to evidence from prior MRIs showing problems with my cerebellum and basal ganglia, side effects of either not being able to urinate which caused a very bad bladder infection or having to urinate with severe urgency. I have gastroperisis, lemmel's syndrome, 3 large periampullary diverticula doudenums pressing on my ampulla of vatar which makes having a bowel movement almost impossible. Luckily I have chronic diarrhea because none of my sphinchters work and my anal sphincter is the size of 5mm x 10mm with a hard stenosis, so if feces is larger than a small grape, I have to move it aside for the diarrhea to pass. I have trigeminal neuralgia, migraine headaches, daily headaches, every type of headache, my hands do not work at all and that is after having carpal tunnel surgery for both. My neck and lower back both have severe DDD, my neck needs surgery. I will say one good thing, the 10mcg/hour Butrans patch has stopped my nighttime neuropathy paun completely. My fingers still swell but I'm able to sleep. And even if I have insomnia, I do not have nighttime neuralgia. 8 years to find something to fix that! I still get shooting pains from my feet during the day. Oh, and I was just told that my ECG came back abnormal, so I will be seeing my cardiologist tomorrow. It would be nice to have one good day of no pain of any kind. And one doctor who could help with all of my problems. I see myself in a wheelchair very soon. More than half the time, my legs are completely numb from my knees down. These are just 10% of my medical problems, ugh! Thanks for listening. And now the time to get up and get dressed so my husband can take me shopping to buy groceries for my wonderful 27 year old schitzophrenic son. My son and I used to do this together for a fun outing, but I cannot drive anymore. Unable to eat any type of healthy food and to nauseated to want to eat, my weight is down to 100 pounds. Not good

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Oh, my,@krissylamb, my heart goes out to you. One day we will share "war" stories. Suffice it to say, however, I believe you may have me beat.
I will say, however, that I was exposed to unnecessary radiation treatment as a baby, which resulted in my young adult years as being diagnosed with thyroid cancer. Two surgeries later, thyroid medication for life.
I have many conditions and not enough time or desire to list them all.
We are raising a wonderful boy who is the light of our life.
We have a child with several illnesses severe enough for permanent disability. Mental and physical illnesses alike.

Chronic pain, month after month of doctor's appointments and treatments, and one bodily function after another failing, is enough to put one's mind in a whirlwind of emotions.

Sometimes I feel like I just want to eat a carton of ice cream all by myself and binge watch Netflix until I am bleary eyed. But we homeschool, so that is not an option. Also, I'm Type 2 Diabetic. So unless I like comas, that's out as well.

Sometimes I feel like I don't have the desire to go anywhere or do anything. During those times I can easily be a hermit. Then one day, I wake up and there's this feeling of happiness.

You have found yourself in a place where folks are going to be in a hurry to help you. Many of us have been through many traumatic illnesses and situations , not exactly like yours but painful and heartwrenching nonetheless.
I admire your courage and tenacity. I respect you so much for not giving up. I hope that you will return and let me know how your appoint ment goes . There are mentors and moderators here who know patients with many of the same conditions as you are experiencing. I will be looking for information myself and for research . I am old as dirt, so it will take me a bit longer than some of these youngsters around here.

Thank you again for sharing this part of your journey. Let's "talk" with each other soon! Love and Light,
Mamacita

@mamacita

Oh, my,@krissylamb, my heart goes out to you. One day we will share "war" stories. Suffice it to say, however, I believe you may have me beat.
I will say, however, that I was exposed to unnecessary radiation treatment as a baby, which resulted in my young adult years as being diagnosed with thyroid cancer. Two surgeries later, thyroid medication for life.
I have many conditions and not enough time or desire to list them all.
We are raising a wonderful boy who is the light of our life.
We have a child with several illnesses severe enough for permanent disability. Mental and physical illnesses alike.

Chronic pain, month after month of doctor's appointments and treatments, and one bodily function after another failing, is enough to put one's mind in a whirlwind of emotions.

Sometimes I feel like I just want to eat a carton of ice cream all by myself and binge watch Netflix until I am bleary eyed. But we homeschool, so that is not an option. Also, I'm Type 2 Diabetic. So unless I like comas, that's out as well.

Sometimes I feel like I don't have the desire to go anywhere or do anything. During those times I can easily be a hermit. Then one day, I wake up and there's this feeling of happiness.

You have found yourself in a place where folks are going to be in a hurry to help you. Many of us have been through many traumatic illnesses and situations , not exactly like yours but painful and heartwrenching nonetheless.
I admire your courage and tenacity. I respect you so much for not giving up. I hope that you will return and let me know how your appoint ment goes . There are mentors and moderators here who know patients with many of the same conditions as you are experiencing. I will be looking for information myself and for research . I am old as dirt, so it will take me a bit longer than some of these youngsters around here.

Thank you again for sharing this part of your journey. Let's "talk" with each other soon! Love and Light,
Mamacita

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I wont go into all my physical problems as I am older than dirt..but I sympathize with you both very much. I can seldom go out anymore but God has brought me thru to old age for a reason I am sure. I hate pain too!
Take care ladies. I will say a prayer for you both! ♡♡♡♡♡

@carolyn37

I wont go into all my physical problems as I am older than dirt..but I sympathize with you both very much. I can seldom go out anymore but God has brought me thru to old age for a reason I am sure. I hate pain too!
Take care ladies. I will say a prayer for you both! ♡♡♡♡♡

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Hi,@carolyn37, and thank you for your kind words. If I have to wear all these labels like a Girl Scout wears her merit badges, then I am certainly blessed to be in such wise company. I recently decided to use my prescription medications sparingly and my supplements more frequently. With my PCP's approval, of course. I had gotten to the point that I felt like a walking pharmacy. I got so sore and stiff with medication every single day. My doctors have always given me the leeway to take the minimum dosage up to the maximum dosage, whichever works best to prevent a flare.
Thanks again for your encouraging words!
Peace,
Mamacita

@krissylamb

I have a lot of health issues do to elemental toxicity poisoning by inhalation while working at a Biotech Co. 2010-2011. All the symptoms started immediately but I was told by the Chief medical officer that mercury poisoning was just a myth, so I never thought about it again until July 1, 2016 when it was confirmed. During the past 8 plus years, I have gotten worse but at the moment I have severe vertigo and orthostatic hypotension together. I can handle one or the other just not both at the same time. I believe that SNF small nerve fiber neuropathy is finally going crazyin my head. I just had an MRI. Because I have 2 screws on the right side and 3 screws on the left side holding my jaws together due to TMJ, the MRI was unable to see what it needs to see. Of course my Neurologist is on vacation. I truly believe I have MSA-c due to evidence from prior MRIs showing problems with my cerebellum and basal ganglia, side effects of either not being able to urinate which caused a very bad bladder infection or having to urinate with severe urgency. I have gastroperisis, lemmel's syndrome, 3 large periampullary diverticula doudenums pressing on my ampulla of vatar which makes having a bowel movement almost impossible. Luckily I have chronic diarrhea because none of my sphinchters work and my anal sphincter is the size of 5mm x 10mm with a hard stenosis, so if feces is larger than a small grape, I have to move it aside for the diarrhea to pass. I have trigeminal neuralgia, migraine headaches, daily headaches, every type of headache, my hands do not work at all and that is after having carpal tunnel surgery for both. My neck and lower back both have severe DDD, my neck needs surgery. I will say one good thing, the 10mcg/hour Butrans patch has stopped my nighttime neuropathy paun completely. My fingers still swell but I'm able to sleep. And even if I have insomnia, I do not have nighttime neuralgia. 8 years to find something to fix that! I still get shooting pains from my feet during the day. Oh, and I was just told that my ECG came back abnormal, so I will be seeing my cardiologist tomorrow. It would be nice to have one good day of no pain of any kind. And one doctor who could help with all of my problems. I see myself in a wheelchair very soon. More than half the time, my legs are completely numb from my knees down. These are just 10% of my medical problems, ugh! Thanks for listening. And now the time to get up and get dressed so my husband can take me shopping to buy groceries for my wonderful 27 year old schitzophrenic son. My son and I used to do this together for a fun outing, but I cannot drive anymore. Unable to eat any type of healthy food and to nauseated to want to eat, my weight is down to 100 pounds. Not good

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Krissy, Hi I'm Jennifer. You mentioned that you need spine surgery on your neck and you are describing a lot of symptoms that might be spine related. Do you have stenosis with spinal cord compression? I had this and had spine surgery at Mayo that resolved all of my spine issues. Is that something you are considering? These are the symptoms that caught my attention- bladder & bowel control, stabbing pains in your feet, bad headaches, vertigo, trigeminal nerve pain, nausea, control of your hands, numbness in your legs. All of that could be caused by a spine problem, and it could be caused by spinal cord compression in your neck. I had to look up the MSA-c symptoms and they too over lap with spine problems in gait and balance disturbances. I had foot drop, an uneven gait and some vertigo if my neck was spasming. You really don't want to diagnose yourself because it could be caused by something else, and there could be treatment that helps if you get it right. I had a long journey figuring out my own spine issues before I came to Mayo, and 5 surgeons turned me down because my symptoms were unusual. They all made a mistake in thinking that a cervical spine stenosis could not cause problems with legs and balance. It was when I found medical literature with a case like mine that I contacted Mayo for help. I think spine specialists should have been able to figure this out, but they didn't listen to me and I had to get another and sixth opinion. None of my doctors would bring this to the attention of surgeon #5 who had just dismissed me, so my only option was to go elsewhere. I also had to overcome a lot of fear to come to Mayo and ask for spine surgery, but it changed my life and gave me back my most precious gift which is to be able to do my artwork. I was loosing control of my arms and lost a lot of muscle because of spinal cord compression, and having cervical surgery is the best decision I made and it changed my life. I had a lot of fear, but I decided that fear would not decide my future and I didn't want to become disabled. I figured out how to get past all the anxiety I had and was calm and relaxed on my surgery day. I would encourage you to see a spine specialist to discuss your options. Let me know if there is anything else I could answer for you. I surprised myself and never would have believed that I had the courage to do this, but I found that inside and I am grateful every day for this journey and life lesson. There are also environmental medicine doctors who detox metals that might be able to help you. I had all my old dental silver amalgam fillings removed and replaced with safer material by a biological dentist. Prior to that, my antibodies against my thyroid for Hashimoto's were off the charts and could not be measured. After getting the fillings with the mercury out of my body, the levels dropped a lot and could be tested and over several years, my thyroid function has improved and I take less thyroid meds now.

Hi Jennifer, yes I do need surgery on my neck, C5-C6 & C6-C7 have severe DDD, circumfetential disc bulge and uncovertebral hypertrophy with moderate bilateral foraminal stenosis and central canal stenosis. But, I am afraid to have the surgery. To tell you the truth, my neck and lower back pain is nothing compared to my stomach pain, headaches, vertigo and hypotension, it's at the bottom of the list. I said I would wait until I cannot walk, Smiles! And thank you for your information with Amalgams. Unfortunately, but unlucky for me, July 2013 I had my two back left bottom molars replaced and within 2 days had a dozen quarter sized lymph/serum filled sores oozing on the back of my head and neck. I was diagnosed for MRSA. I spent 2 years on antibiotics which made me so ill, I pretty much stayed in bed for 2 years not realizing the antibiotics were actually detoxing my system of the mercury that I didn't know I had? Along with that my husband is an amazing pharmaceutical scientist who lives and breathes health, anti inflammatory everything, vitamins, fish oil, NAC, alpha lipoic acid, etc…trying to help me get better. I finally tested Negative September 2015 for MRSA but still have the sores show up for no reason along with severe Sweets syndrome rashes on my face, neck and chest. Of course I never get the face rashes when I am seeing a doctor, or I am in between doctors? Back in the day the sores lasted for ever and the face rashes too. But now, they will show up on a Friday and disappear by Sunday, which is great, but I want a cream called Finacea prescribed so my insurance has to pay for it, ($500.00), and without my new dermatologist seeing these darn things, I have to rely on oil of olay! So, what ever mercury was able to attach itself to my brain, stomach and other parts of my body should be the only mercury left. The second the white feelings were introduced, I had all of my amalgams replaced, (probably when I was pregnant with my son, ugh). I do have an amalgam purple tattoo where one of the left molars was replaced. I did end up with endocarditis and was hospitalized for a week on Vancomycin, thanks to some idiot doctor making it okay for people with micro valve prolapse to have dental work done without amoxicillian. I believe if I had taken amoxicillian none of this would have happened. Anyways, that is just one more of the 97 more illnesses I have. Thank you again. I was told that because of my small nerve fiber neuropathy, severe allodynia and peripheral neuralgia that, yes my legs will work, but the pain may not go away, and because my legs work more often than not right now, I will wait. I am glad that you are doing good. I understand completely how long it takes to get answers, TOO LONG. Kristin

@krissylamb

Hi Jennifer, yes I do need surgery on my neck, C5-C6 & C6-C7 have severe DDD, circumfetential disc bulge and uncovertebral hypertrophy with moderate bilateral foraminal stenosis and central canal stenosis. But, I am afraid to have the surgery. To tell you the truth, my neck and lower back pain is nothing compared to my stomach pain, headaches, vertigo and hypotension, it's at the bottom of the list. I said I would wait until I cannot walk, Smiles! And thank you for your information with Amalgams. Unfortunately, but unlucky for me, July 2013 I had my two back left bottom molars replaced and within 2 days had a dozen quarter sized lymph/serum filled sores oozing on the back of my head and neck. I was diagnosed for MRSA. I spent 2 years on antibiotics which made me so ill, I pretty much stayed in bed for 2 years not realizing the antibiotics were actually detoxing my system of the mercury that I didn't know I had? Along with that my husband is an amazing pharmaceutical scientist who lives and breathes health, anti inflammatory everything, vitamins, fish oil, NAC, alpha lipoic acid, etc…trying to help me get better. I finally tested Negative September 2015 for MRSA but still have the sores show up for no reason along with severe Sweets syndrome rashes on my face, neck and chest. Of course I never get the face rashes when I am seeing a doctor, or I am in between doctors? Back in the day the sores lasted for ever and the face rashes too. But now, they will show up on a Friday and disappear by Sunday, which is great, but I want a cream called Finacea prescribed so my insurance has to pay for it, ($500.00), and without my new dermatologist seeing these darn things, I have to rely on oil of olay! So, what ever mercury was able to attach itself to my brain, stomach and other parts of my body should be the only mercury left. The second the white feelings were introduced, I had all of my amalgams replaced, (probably when I was pregnant with my son, ugh). I do have an amalgam purple tattoo where one of the left molars was replaced. I did end up with endocarditis and was hospitalized for a week on Vancomycin, thanks to some idiot doctor making it okay for people with micro valve prolapse to have dental work done without amoxicillian. I believe if I had taken amoxicillian none of this would have happened. Anyways, that is just one more of the 97 more illnesses I have. Thank you again. I was told that because of my small nerve fiber neuropathy, severe allodynia and peripheral neuralgia that, yes my legs will work, but the pain may not go away, and because my legs work more often than not right now, I will wait. I am glad that you are doing good. I understand completely how long it takes to get answers, TOO LONG. Kristin

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Hi Kristin-
I'm glad you have such a supportive husband who knows supplements. I have taken most of those myself. Be careful with NAC because if you take too much, it reverses what it is supposed to do in helping detox (precursor to glutathione in the body) and will cause extreme thirst until your body processes it which could take days.

If you would like to talk about fear of surgery, I can help you with that. One of the doctors I saw before coming to Mayo started some huge anxiety for me. Every day when I woke up and thought about spine surgery, my heart raced and blood pressure spiked and I literally felt like I was going to get hit by a train and was stuck on the rail road tracks. That went on for 4 months every morning and then I asked myself WHY was I doing this to myself? I worried about my heart health and understood this because my dad had heart disease. During this time, I was taking care of both my elderly parents who were disabled and in wheel chairs.

I have a biology degree and my first job after college was working at a university in neuroanatomy research, so I knew enough to be able to understand a lot of medical literature. I knew if I didn't confront my fears, that I too would become disabled. I wanted to be able to maintain my health and balance as I age and I feared loosing my ability to paint more than facing surgery. I got through carpal tunnel surgery years earlier with clinical hypnosis which worked like magic.

Then one day I realized that I wasn't born with this fear. Fear is learned somewhere along the way. If fear was learned, then it could be un-learned and deprogrammed, so I set out to discover the source. I didn't want fear to control my judgement and I knew that I needed surgery to have the quality of life that I wanted and needed to pursue my art. I didn't want to loose the ability of all the years of art training and experience I'd had. I made friends with my fear and decided it was OK to be afraid. I asked one of my doctors if he was afraid when he had emergency heart surgery and he told me yes…. so that made it OK for me to have these feelings. I started writing down all the events in my life that caused my fears and looked for a pattern. I watched TED talks on fear. I listened to music and did deep slow breathing to learn to lower my blood pressure and I could lower it at least 10 points. Then I started singing.

I was afraid of going to appointments with surgeons and I used everything I could find online about a surgeon for an up coming appointment to help me. I watched his videos to be comfortable with his manner and voice. Then I started watching him while I listened to the music I had learned to relax with and I sang to his picture every morning during my music and breathing sessions. I went even further by drawing pictures of the surgeon. It was my head game because I only draw or paint things I like and I needed to like a doctor to be comfortable. All 5 of the surgeons who had refused to help me were training for me to be able to face my fears of them.

By the time I came to Mayo, I was getting control of it and I asked my Mayo surgeon if I could take his photo to draw pictures of him and told him I needed to like him. When I got an offer of surgery at Mayo right away, I was relieved and happy; not afraid. Of course I had some nerves the day before my surgery, but I managed not to worry until then. When I needed to release nervous energy, I drew his picture, and I e mailed images of them to his nurse. All of this made a very personal connection to my surgeon, and the first thing I wanted to do when I was recovered enough was to paint his portrait.

Soooo….. at one of my post surgical followups back at Mayo, his nurse scheduled the appointment for me on his surgery day. We sprung it on him and I had my camera. He started having some fun with it and was strutting around the room like a model and I could not stop laughing. I really miss being at Mayo. That could only happen here in that moment. Who knew seeing a neurosurgeon could be so much fun! I had set a big challenge for myself and I needed to prove to myself that I had regained the ability to do this. A couple months before my one year follow up, I sat down and painted the portrait.

I really looked forward to the next appointment, and I hid the painting behind the curtain in the exam room. So after the medical things were discussed came the unveiling…. and he loved it. I love the painting too and is says more than my words can about how kind and compassionate this man is and how grateful I am that he helped me regain my most precious gift.

I didn't know going through spine surgery could be like this. I decided to join my surgeon's team and what I brought to the table as a patient helped me with hope and healing as much as the medical skills of my team. The surgery did not hurt as much as I imagined that it would and I found I could tolerate my recovery without pain medication. Fear increases pain a lot, so getting control of it really helps, and ironically pain is what I learned to fear. I knew that a great recovery was possible and the earlier the intervention, the better. I decided to see my surgeon more as a person than the gifted surgeon that he is because it helped me relate to him and gave me the comfort and emotional support I needed. I learned how much power a patient has and how important it is to advocate for yourself. That is really the reason I am here writing this now because a few years ago, I didn't think that I had the courage to go through with major surgery. I know what it is like to be imprisoned by fear knowing that a brighter future is out there waiting, and I still have important things to do in my life. If I can help another patient see the possibilities in their own journey, then I will have succeeded.

Here are a few books that might help and I read them as part of my journey. "Back in Control", by David Handscom MD.

Dr. Handscom is a spine surgeon who also became a spine surgery patient and his views from both sides of the table are very interesting. It was reading this book that helped me understand how much stress a surgeon has, and I wanted to know that I was in the hands of a surgeon who was happy with his life and work. Physician burnout is a problem and I wanted a doctor who wanted to be there for me. This book is about overcoming chronic pain. http://www.backincontrol.com/

The other books are by Dr. Sood at Mayo and are about building resilience in your life. His books explained why I succeeded with my routine to beat the fear and why it worked. Our brains are wired to respond to stress and fear above all else as a survival mechanism, and just knowing that is empowering in knowing that you can get past it.

The "Mayo Clinic Handbook for Happiness" and "Mayo Clinic Guide to Stress Free Living". Both are excellent. One is more of a workbook type with exercises and the other is more detailed.

Here are the links to his books https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

I also read "Joined at the Heart" by Pete and Erin Huttlinger which is the story of Pete, a well known musician, who had many medical interventions because he was born with a serious heart defect. This helped me because I knew Pete and here was my friend with a much more serious problem and he embraced it with grace and gratitude. Pete put his energy into overcoming the obstacles.
www. petehuttlinger.com

Let me know if I can answer anything else.

Jennifer, I just reread your post. YES, I was surprised that my neck was also causing all of the other issues, and said to myself, "that's why my hands still do not work"? And I thought "Wow" just another reason why I have bladder/diarrhea issues? I definitely will not diagnose myself, but like you have had to do my own research. To find out that POTS, is another syndrome but less severe than MSA-c, and is what my Neurologist and Cardiologist are saying I have, (at the moment) not excluding my neck stuff. My cardiologist put me on Florinef 0.1mg x 1 daily fit the orthostatic hypotension on 9/13/2018 and by this past Monday I was able to drive myself to my neurologist office. Walking down the long hallway, I realized that I have to learn how to walk again, I felt like a fool, I was so wobbly. It was truly weird having a clear head. My neurologist told me not to get used to the vertigo being gone, but I will take what I can get. WHY MY CARDIOLOGIST DID NOT PUT ME ON THIS MEDICATION 3 YEARS AGO IS SO FRUSTRATING. It clearly says in my file from my first visit with him that I had and every visit after that I have orthostatic hypotension? I mean, think of those years wasted with not one doctor taking me seriously. Try keeping a relationship together when you have to be propped up on a pillow, cant move your head, afraid for the bed to shake while having sex? If I had the energy, I would sue every doctor that I have seen just for ruining so many years of my life! They are all lucky my head is too ADHD to concentrate on all of the HATRED and can only stay somewhat sane by laughing it all away. RIGHT after my Neurologist appt on Monday I sat in traffic to pick up my son and take him grocery shopping for the first time in along time, it was so fun! One more thing, when I was getting my migraine botox shots on Monday, my neurologist said to me to clench so she could inject the ones near my ears because of night time clenching and she was surprised that "whatever" was not swollen like usual and I was able to tell her about the sudden snoring and horrific nightmares that I all of the sudden have and she is having me do an in house sleep test to see if I need to do a hospital sleep test. This is the first time ever that a doctor has took me serious and all because my face/jaws something was not swollen? Image if I were knew to her practice, she would have laughed at me in her head? No one can make up the stuff that keeps happening to me? Have you heard of POTS, because I have not, and I have been Googling my symptoms for a few months with POTS never showing up, only the MSA-c? Oh, and this time she injected the botox from shoulder to shoulder and more in my lower neck. I didn't question it, but now I realize it's because she saw the MRI of my neck and let me tell you, I didn't understand why my neck hurt so bad yesterday and why i only had one good day without a headache and it's because of the botox. Unfortunately I am one of those people who have a few weeks of horrific pain after the injections but get a good few months relief from the trigeminal neuralgia shooting pains after. Two months ago I wanted to see if I could stop the botox just because of how debilitating the few weeks are after and I ended up suffering two weeks prior and two weeks after of crazy headaches, so I will not be doing that again!
I am super happy that you are able to paint again. I love arts and crafts but have had to stop. Maybe I will talk to Dr. Udani about the surgery. I need to get over the fear also. Does that mean I need to get over the fear and have Trigeminal neuralgia surgery too. Look up Dr. Alksne in La Jolla CA, he is way too old to be performing surgery! And than i have to get over the fear of a Whipple procedure on my stomach, and why i have a horrific fear of going to the ER because I am EXTRA FEARFUL that I will have to have the Whipple surgery. I am doing everything possible to stay clear of that one, UGH. lots of laughs and big smiles, Krissy

@krissylamb

Hi Jennifer, yes I do need surgery on my neck, C5-C6 & C6-C7 have severe DDD, circumfetential disc bulge and uncovertebral hypertrophy with moderate bilateral foraminal stenosis and central canal stenosis. But, I am afraid to have the surgery. To tell you the truth, my neck and lower back pain is nothing compared to my stomach pain, headaches, vertigo and hypotension, it's at the bottom of the list. I said I would wait until I cannot walk, Smiles! And thank you for your information with Amalgams. Unfortunately, but unlucky for me, July 2013 I had my two back left bottom molars replaced and within 2 days had a dozen quarter sized lymph/serum filled sores oozing on the back of my head and neck. I was diagnosed for MRSA. I spent 2 years on antibiotics which made me so ill, I pretty much stayed in bed for 2 years not realizing the antibiotics were actually detoxing my system of the mercury that I didn't know I had? Along with that my husband is an amazing pharmaceutical scientist who lives and breathes health, anti inflammatory everything, vitamins, fish oil, NAC, alpha lipoic acid, etc…trying to help me get better. I finally tested Negative September 2015 for MRSA but still have the sores show up for no reason along with severe Sweets syndrome rashes on my face, neck and chest. Of course I never get the face rashes when I am seeing a doctor, or I am in between doctors? Back in the day the sores lasted for ever and the face rashes too. But now, they will show up on a Friday and disappear by Sunday, which is great, but I want a cream called Finacea prescribed so my insurance has to pay for it, ($500.00), and without my new dermatologist seeing these darn things, I have to rely on oil of olay! So, what ever mercury was able to attach itself to my brain, stomach and other parts of my body should be the only mercury left. The second the white feelings were introduced, I had all of my amalgams replaced, (probably when I was pregnant with my son, ugh). I do have an amalgam purple tattoo where one of the left molars was replaced. I did end up with endocarditis and was hospitalized for a week on Vancomycin, thanks to some idiot doctor making it okay for people with micro valve prolapse to have dental work done without amoxicillian. I believe if I had taken amoxicillian none of this would have happened. Anyways, that is just one more of the 97 more illnesses I have. Thank you again. I was told that because of my small nerve fiber neuropathy, severe allodynia and peripheral neuralgia that, yes my legs will work, but the pain may not go away, and because my legs work more often than not right now, I will wait. I am glad that you are doing good. I understand completely how long it takes to get answers, TOO LONG. Kristin

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@krissylamb Sad to say, but reading your report was very good for me. I finally found someone who is in my class of numbers of illnesses and symptoms, although you are far ahead of me in medical care. Mine is Gelsolin, a form of Amyloidosis. Just getting a diagnosis is a fight to the finish, I guess. But you have contributed to my diagnosis significantly. For a quarter century I have had a series of "..quarter sized lymph/serum filled sores oozing on the back of my head and neck." When one of them is hit fairly hard or punctured, it will bleed and ooze. Even a small child hitting me on the back of the shoulders or on the upper leg or arms will cause it to ooze. Once I happened to puncture one somehow, like with a needle or something. It oozed and bled for a couple days. It oozes foggy stuff the consistency of Elmer's glue. I don't know what it means, but I will find out. My story is at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl"

How funny that we were writing at the same time? Speaking of elderly, I finally get to go see my mother n law. We had to put her in a wonderful, brand new facility for memory care and Alzheimer's this past April, (she believes it is a wonderful hotel somehow owned by her parents because she says, "they keep telling me everything is taken care of", her expenses). She loves living there. Let me get up and get dressed. Enjoy your day!

@oldkarl

@krissylamb Sad to say, but reading your report was very good for me. I finally found someone who is in my class of numbers of illnesses and symptoms, although you are far ahead of me in medical care. Mine is Gelsolin, a form of Amyloidosis. Just getting a diagnosis is a fight to the finish, I guess. But you have contributed to my diagnosis significantly. For a quarter century I have had a series of "..quarter sized lymph/serum filled sores oozing on the back of my head and neck." When one of them is hit fairly hard or punctured, it will bleed and ooze. Even a small child hitting me on the back of the shoulders or on the upper leg or arms will cause it to ooze. Once I happened to puncture one somehow, like with a needle or something. It oozed and bled for a couple days. It oozes foggy stuff the consistency of Elmer's glue. I don't know what it means, but I will find out. My story is at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl"

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I have goose bumps all over my body and immediately started to cry. I have never heard of anyone with these sores. I got one on my left arm one day walking up the stairs. It wasn't the store but my skin just tore off, I had no idea and I woke up from a nap with blood all over the sheets. And I had one of the sores early on break out on my ankle. The first test by doctor did was for Amylidosis, and it came back negative which is crazy because I al also have all of those symptoms. I read a report from this oncologist at UCSD, Dr. White, she said that she wasn't sure what was wrong with me because when she asked if I had something I did? Guess what, unfortunately every test she ran I HAD, including my anal sphincter not working, I could not pass the balloon test, DUH! I made them change their report to not say, "she says she has al man ental poisoning", it was even worse spelling. I realize now that once I said the word ELEMENTAL, doctors stopped listening. They still don't, hahagagahagahaga! That's my laugh at myself! I will read your story this afternoon. Thank you for the goosies!

@krissylamb, please tell me how you do. Do you know what the test was the doctor gave you? Alnylam has a program to send info to your doctor to help them with a diagnosis. I will be happy to look it up.

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