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leahklein
@leahklein

Posts: 3
Joined: Feb 28, 2018

I don't know what I have, but it's painful!

Posted by @leahklein, Wed, Feb 28 6:43pm

16+ physicians (most of them at Mayo Clinic – Rochester), 20+ conditions/ailments/diseases ruled out and countless therapies, procedures, injections and you name it have been tried. I'm disappointed to say the least. I grew up going to Mayo Clinic Rochester my whole life. I now live about 3.5 hours away out of state. I grew up thinking and up until recently still thought that Mayo Clinic was the place you go when where you've been doesn't have the answers. I've heard, "Sorry I can't help." more than I can count. The doctor's I've seen have ruled out their specialty problem and closed my case – not referring me elsewhere, not helping me think outside the box and certainly not following up to see how I'm doing. I literally am looking for a doctor who is a replica of Dr. House from the hit show…'House'. In 2007 I had cystic fibrous dysplasia in my left femur. Successfully removed & repairs by Dr. Shives. Dr. Sems inserted a nail for healing and stability. Typical recovery and rehab from that surgery. Fast forward 2013, pain begins in my knee during my regular running exercise. I was seen in 2013 by Dr. Cross who removed a broken distal screw previously holding my nail in place – failed attempt to remedy my knee pain. 2013-2014 saw a slow but steady increase in my knee pain from just daily walking with additional pain into my left interior thigh and groin. 2014 had a meniscus tear repair by Dr. Nwakama at SW MN Orthopedics. This again was an attempt to remedy my knee pain – fail. 2014-2016 increased intensity and frequency of pain with the solidification of a clear and unwavering pain path from left groin to behind left knee cap. You could take a string, tie it in my groin and tie it behind my knee cap and pluck it like a guitar – that is my pain path. 2016 due to my extensive history with Mayo Clinic, my WI primary care physician sent me back. Dr. Sutka, finding "nothing wrong" referred for intense physical therapy – stressing that I should find a physical therapist willing to be aggressive and think outside the box. January 2016 – July 2016 weekly physical therapy. This did not yield positive results as my pain was so intense that the majority of exercises could not be completed. Physical Therapy approaches tried: routine PT exercises for specified areas of pain, dry needling, meditation, ultra sound, massage therapy and mirror therapy. Seeing no results, my PT recommended I see a Pain Specialist. Sept. 2016 I had SI Joint Injection. Oct 2016 S Nerve Block Lumbar injection. Both no help. Dec. 14, 2016 Dr. Mangold and Dr. Sems (Mayo Clinic) found nothing wrong with the nail inserted almost 10 years prior and said they couldn't help. Dec. 15, 2016 Ortho consults with Dr. Kollitz and Dr. Mabry. Their thought was possible dysplasia of the hip and referred me to Dr. Trousdale who said any hint of dysplasia he was seeing on my x-ray was no cause for concern and said he could not help. Jan 6, 2017 left hip injection with Dr. Duck – no help. Jan 6, 2017 Pain consult with Dr. Pittelkow, requested i follow up with Dr. Mary Gutierrez. Feb 3, 2017 follow up with Dr. Gutierrez, recommended trial nerve block of left knee for possible ablation. March 21, 2017 left knee nerve block by Dr. Michael Carl of Neuroscience Group in Neenah, WI. No help. March 2017-June 2017 several attempts to contact Dr. Gutierrez's office to follow up on neuromodulation which was another recommendation of hers – to this day i have not had a response. February 2018 pain is at a constant 2 out of 10 with 7 out of 10 by noon through the night. I haven't taken one step with my left leg without pain in YEARS. I need help. I need an advocate at Mayo Clinic and a doctor who is willing to explore any and everything for an answer. I'm 29 years old and the thought of "pain management" (which has been 100% unsuccessful) is just not an option. ANY and ALL suggestions/advise welcome!!!!

REPLY

Leahklein, has anyone reached out since this post? I’m curious. I feel you. Doctors are tired, they get up and run like most Mother’s do. Eventually, it becomes politics and a paycheck. Who can blame them with the way the health Care system is. I know this does not help your concerns or frustrations. Reading this, sounds like me. I haven’t been able to breath right while laying down since March 2015. My right side felt bruised every time I laid on it since Dec. 2016. I see an endocrinologist at Christiana Hosp. And recently saw one at UofPenn Hosp. I see a gastroenterologist at Penn who also specializes in the liver. Eight years ago, I quit smoking, completed the change of life (started when I was 38, finished when I was 42), found out I had an under active thyroid (who the Australian doc at Jefferson HOSP said I was fine) as I felt like a Mack truck was running me over every day and I blew up like an hot air balloon overnight…at least that is what it felt like. Even my co workers asked if I was pregnant or what was wrong. Back to my right side, still feels bruised on right side, it’s 2018, started Dec 2014. My liver enzymes are have been high for a few years and in 2016, I found out I have a fatty liver. I do have Barrett’s disease, it was told I have fibromyalgia, my memory has declined along with being able to multi task, my back…that’s another story for a different day. Back to breathing..saw a lung doctor, had some test…all looked good but yet, I can’t breath right. I do sleep with a CPAP. That’s when I started using it every night. A few friends went and I went to Mexico a few years back. We were in Tula. There were these steps that went down to the water….coming back up, I had to stop and when I go to the top, I felt like I couldn’t catch my breath. They were fine and noticed how hard it was for me. I move fast but I am overweight by at least 50lbs according to BMI. I can’t loose it. My muscles at the top of my throat and at bottom of stomach, are shot according to Jefferson University. I had my gallbladder when my son was one bc I kept vomiting and pain in my stomach…that wasn’t it bc it happened again (ended up in ER few times), so they decided my sphinxes needed to be cut so food can go down. Came home same day from Hahneman HOSP in Philly and ended up in ER with pancreatitis for 5/6 days. Had I not have gone, my body would have shut down and bye bye. Well I can go on and on … O’not to mention I have scars on my arms from itching for the past 11 years. It comes and it goes and only targets my arms. It can last 3 months…only ice helps. No one can figure that one out either. Back to breathing….it has to be something bc it is not normal. Sometimes my heart flutters for me to catch my breath. I was once told from a Christiana Heart doc that was norm. Maybe it is but I don’t feel normal when it happens. Sometimes my blood pressure is so low that I feel like my heart is trying to pump blood. I think my last one was 78/59…I was told it was good. If it’s goid, then why do I always feel so tired and all my joints, muscles and bones hurt. Why do I wake up with barely any eyelids, why can’t I concentrate, why can’t I lie down without my CPAP hooked to my nose, why do I itch, why does my sides hurt on each side of ribs….the list goes on. Be your own advocate, do research. Doctors are not miracle workers. I do agree that we are a number to most. And bc most are too busy, if it’s not a familiar diagnosis, they send you on your way with no answers and like you said….no further investigation. Keep in mind, it’s the hospitals, the health insurance and the pharmaceutical companies that rake us!!!! It’s their domino affect! One will never cave and lower their prices to normalcy until they stop being greedy, work together, and start becoming human. A lot of these doctors’ hands are tied!! Back to politics…we need our leaders to put their actions behind their words and stop the cycle!!!!! Stop the medical, insurance companies and pharmaceutical companies from abusing us and ESPECIALLY the our elders. So my point being is it’s not about finding a solution. It’s about greed, laws, employers that force doctors to be on an assembly line basically instead of being a doctor. Be your own advocate and don’t let anyone tell you to stop looking on the internet! Know your own body! That’s another thing, if it’s not in the “insurance range” or “doctors range” then they decide you are like everyone else and your body and your mind is fine if it’s in their ranges!!! No two bodies are alike…wake up America!!!

@spagano

Leahklein, has anyone reached out since this post? I’m curious. I feel you. Doctors are tired, they get up and run like most Mother’s do. Eventually, it becomes politics and a paycheck. Who can blame them with the way the health Care system is. I know this does not help your concerns or frustrations. Reading this, sounds like me. I haven’t been able to breath right while laying down since March 2015. My right side felt bruised every time I laid on it since Dec. 2016. I see an endocrinologist at Christiana Hosp. And recently saw one at UofPenn Hosp. I see a gastroenterologist at Penn who also specializes in the liver. Eight years ago, I quit smoking, completed the change of life (started when I was 38, finished when I was 42), found out I had an under active thyroid (who the Australian doc at Jefferson HOSP said I was fine) as I felt like a Mack truck was running me over every day and I blew up like an hot air balloon overnight…at least that is what it felt like. Even my co workers asked if I was pregnant or what was wrong. Back to my right side, still feels bruised on right side, it’s 2018, started Dec 2014. My liver enzymes are have been high for a few years and in 2016, I found out I have a fatty liver. I do have Barrett’s disease, it was told I have fibromyalgia, my memory has declined along with being able to multi task, my back…that’s another story for a different day. Back to breathing..saw a lung doctor, had some test…all looked good but yet, I can’t breath right. I do sleep with a CPAP. That’s when I started using it every night. A few friends went and I went to Mexico a few years back. We were in Tula. There were these steps that went down to the water….coming back up, I had to stop and when I go to the top, I felt like I couldn’t catch my breath. They were fine and noticed how hard it was for me. I move fast but I am overweight by at least 50lbs according to BMI. I can’t loose it. My muscles at the top of my throat and at bottom of stomach, are shot according to Jefferson University. I had my gallbladder when my son was one bc I kept vomiting and pain in my stomach…that wasn’t it bc it happened again (ended up in ER few times), so they decided my sphinxes needed to be cut so food can go down. Came home same day from Hahneman HOSP in Philly and ended up in ER with pancreatitis for 5/6 days. Had I not have gone, my body would have shut down and bye bye. Well I can go on and on … O’not to mention I have scars on my arms from itching for the past 11 years. It comes and it goes and only targets my arms. It can last 3 months…only ice helps. No one can figure that one out either. Back to breathing….it has to be something bc it is not normal. Sometimes my heart flutters for me to catch my breath. I was once told from a Christiana Heart doc that was norm. Maybe it is but I don’t feel normal when it happens. Sometimes my blood pressure is so low that I feel like my heart is trying to pump blood. I think my last one was 78/59…I was told it was good. If it’s goid, then why do I always feel so tired and all my joints, muscles and bones hurt. Why do I wake up with barely any eyelids, why can’t I concentrate, why can’t I lie down without my CPAP hooked to my nose, why do I itch, why does my sides hurt on each side of ribs….the list goes on. Be your own advocate, do research. Doctors are not miracle workers. I do agree that we are a number to most. And bc most are too busy, if it’s not a familiar diagnosis, they send you on your way with no answers and like you said….no further investigation. Keep in mind, it’s the hospitals, the health insurance and the pharmaceutical companies that rake us!!!! It’s their domino affect! One will never cave and lower their prices to normalcy until they stop being greedy, work together, and start becoming human. A lot of these doctors’ hands are tied!! Back to politics…we need our leaders to put their actions behind their words and stop the cycle!!!!! Stop the medical, insurance companies and pharmaceutical companies from abusing us and ESPECIALLY the our elders. So my point being is it’s not about finding a solution. It’s about greed, laws, employers that force doctors to be on an assembly line basically instead of being a doctor. Be your own advocate and don’t let anyone tell you to stop looking on the internet! Know your own body! That’s another thing, if it’s not in the “insurance range” or “doctors range” then they decide you are like everyone else and your body and your mind is fine if it’s in their ranges!!! No two bodies are alike…wake up America!!!

Jump to this post

@spagano Hi. I hear your frustration. I went through the same gambut, only it was with my lungs. I am visiting this thread on connect today because I have a pinched nerve in my back. This is my first incident of it and been going on for 3 weeks. Chiropractor (2 visits) no help. Do you know if I should see an osteopath or orthopedic? Or is it something you have to wait out? I thought that maybe with your many doctor visits, you could advise me? I do want to talk about what is going on with you too.

@spagano Ok, I am back. I don't know if you are open to traveling to another state for medical care, but if you are, here is a tip. The University of Arizona Medical Center has a wonderful dept that uses various philosophies in medicine; not just Western. They practice Integrative medicine. They don't treat 'symptoms', they treat 'causes'. Many illnesses are secretly food bourne. They tend to be unknown allergies and reactions. There are tons of things I could discuss with you, but it would look like a book! There is a wonderful book called 'Eating for Optimal Health' by Dr. Andrew Weil (he is a dr at the U of A medical center). You mentioned your weight, you already know what you need to do in that dept. That is something you can do something about. Obviously, it won't be easy for you as you have stated. I have found that visualzing is a good first step. Tape a picture of a slender person on your fridge and say to yourself, "That is the real me, and I will be that again." What we see and believe manifests itself. I know I must sound like a nut case, but it is true. Perhaps check out books at your library by Dr. Andrew Weil and start on a healthier you! I am here if you want to chat more. -Terri

@windwalker

Your back problems sound much like the way mine started. I'm sorry to read that you have been having continuing back pain. Unfortunately, I put off doing anything about it for at least 6 years, other than see a chiropractor who was not able to stop the pain. I had back problems for many years, with back surgery, outpatient laminectomy, in December 2016. I recommend that you see a neurologist or back surgeon. They will probably order an X ray and maybe an MRI to determine the level of problem with your back. Then depending on how much damage you have, I recommend seeing an Active Release Technique (ART) practioner. If you Google, Active Release Technique, you can read about how it works. Then, if you are still interested, research your area for practitioners and find one who has the most certifications in your area. I was surprised to find that all the practitioners I found were chiropractors. I tried osteopathic treatment prior to my surgery and nothing helped.

I'm recommending ART because it has been so effective on my back pain. After my surgery, my surgeon recommended that I try all ways to relieve my pain before he would have to do major surgery. I had been through 3 rounds of PT, acupuncture, and massage, but nothing helped relieve my pain. My L4 disk has slipped onto my spinal cord, and the pressure is what is causing the pain. I saw my chiropractor for 6 ART treatments, along with laser heating of my muscles. Dr. Andrews had me come in 2 times a week for 3 weeks. It worked! I could hardly believe that the constant pain that had disabled me for over 18 months was gone in 3 weeks of treatment. I still go once a month for a tweak and a manipulation if needed.

I try to be careful not to reinjure my back, but we are moving right now, so I need to see Dr. Andrews again before my monthly appointment. I'm using CBD a couple of times a day to give me pain relief and it's working. But I KNOW that as soon as I have an ART and Laser treatment I will be fine. If your physician/surgeon agrees that ART won't be harmful, then I would definitely try it before more invasive treatment. Best of luck. We are all different, so you may not have the same results I have.

Gail
Volunteer Mentor

@gailb

@windwalker

Your back problems sound much like the way mine started. I'm sorry to read that you have been having continuing back pain. Unfortunately, I put off doing anything about it for at least 6 years, other than see a chiropractor who was not able to stop the pain. I had back problems for many years, with back surgery, outpatient laminectomy, in December 2016. I recommend that you see a neurologist or back surgeon. They will probably order an X ray and maybe an MRI to determine the level of problem with your back. Then depending on how much damage you have, I recommend seeing an Active Release Technique (ART) practioner. If you Google, Active Release Technique, you can read about how it works. Then, if you are still interested, research your area for practitioners and find one who has the most certifications in your area. I was surprised to find that all the practitioners I found were chiropractors. I tried osteopathic treatment prior to my surgery and nothing helped.

I'm recommending ART because it has been so effective on my back pain. After my surgery, my surgeon recommended that I try all ways to relieve my pain before he would have to do major surgery. I had been through 3 rounds of PT, acupuncture, and massage, but nothing helped relieve my pain. My L4 disk has slipped onto my spinal cord, and the pressure is what is causing the pain. I saw my chiropractor for 6 ART treatments, along with laser heating of my muscles. Dr. Andrews had me come in 2 times a week for 3 weeks. It worked! I could hardly believe that the constant pain that had disabled me for over 18 months was gone in 3 weeks of treatment. I still go once a month for a tweak and a manipulation if needed.

I try to be careful not to reinjure my back, but we are moving right now, so I need to see Dr. Andrews again before my monthly appointment. I'm using CBD a couple of times a day to give me pain relief and it's working. But I KNOW that as soon as I have an ART and Laser treatment I will be fine. If your physician/surgeon agrees that ART won't be harmful, then I would definitely try it before more invasive treatment. Best of luck. We are all different, so you may not have the same results I have.

Gail
Volunteer Mentor

Jump to this post

@gailb Thanks Gail. I found an ART practicioner a mile from my house. I also know someome who does myofacial release therapy.

Leah, I started with what I thought was a pinched nerve in my back. Was in horrible pain. Had x-rays, took steroids, and went to physical therapy, no help.
Had an MRI and found it was a herniated disc. Had a spinal injection at an orthopedic clinic. First injection helped tremendously for about three months. Had 2nd injection in April. Doing very good. I take only an occasional Tylenol at this time. It has been like a miracle. 🙂

For those who are interested in using CBD as a pain reliever, here are two websites that provide excellent quality products and one has an extensive educational programs that are free. One series of education helps each person determine their own dosage for their problems.

1. http://www.cbdlivingwater.org — has good products. I used the Living Water to help me withdraw from Tramadol.

2. https://mjstherapeutics.org — this is where I purchased my CBD Daily tincture. It's an excellent quality product and they have others you can order online.

3. https://healer.com/about-us/ educational programs. I need to take their education programs and determine the correct dosage for my arthritis and radiculopathy pain.

These are good sites with reliable products and information. I have tested these links now and they work.

Gail
Volunteer Mentor

@gailb

For those who are interested in using CBD as a pain reliever, here are two websites that provide excellent quality products and one has an extensive educational programs that are free. One series of education helps each person determine their own dosage for their problems.

1. http://www.cbdlivingwater.org — has good products. I used the Living Water to help me withdraw from Tramadol.

2. https://mjstherapeutics.org — this is where I purchased my CBD Daily tincture. It's an excellent quality product and they have others you can order online.

3. https://healer.com/about-us/ educational programs. I need to take their education programs and determine the correct dosage for my arthritis and radiculopathy pain.

These are good sites with reliable products and information. I have tested these links now and they work.

Gail
Volunteer Mentor

Jump to this post

@gailb I'm interested in the water but wanted to ask you about he taste what's it like

@gailb

For those who are interested in using CBD as a pain reliever, here are two websites that provide excellent quality products and one has an extensive educational programs that are free. One series of education helps each person determine their own dosage for their problems.

1. http://www.cbdlivingwater.org — has good products. I used the Living Water to help me withdraw from Tramadol.

2. https://mjstherapeutics.org — this is where I purchased my CBD Daily tincture. It's an excellent quality product and they have others you can order online.

3. https://healer.com/about-us/ educational programs. I need to take their education programs and determine the correct dosage for my arthritis and radiculopathy pain.

These are good sites with reliable products and information. I have tested these links now and they work.

Gail
Volunteer Mentor

Jump to this post

@lioness

It has no taste. It's just like drinking bottled water!
Gail
Volunteer Mentor

@gailb

For those who are interested in using CBD as a pain reliever, here are two websites that provide excellent quality products and one has an extensive educational programs that are free. One series of education helps each person determine their own dosage for their problems.

1. http://www.cbdlivingwater.org — has good products. I used the Living Water to help me withdraw from Tramadol.

2. https://mjstherapeutics.org — this is where I purchased my CBD Daily tincture. It's an excellent quality product and they have others you can order online.

3. https://healer.com/about-us/ educational programs. I need to take their education programs and determine the correct dosage for my arthritis and radiculopathy pain.

These are good sites with reliable products and information. I have tested these links now and they work.

Gail
Volunteer Mentor

Jump to this post

@gailb o.k.thanks and you can get relief from the water? Is one bottle suffiecent

@gailb

For those who are interested in using CBD as a pain reliever, here are two websites that provide excellent quality products and one has an extensive educational programs that are free. One series of education helps each person determine their own dosage for their problems.

1. http://www.cbdlivingwater.org — has good products. I used the Living Water to help me withdraw from Tramadol.

2. https://mjstherapeutics.org — this is where I purchased my CBD Daily tincture. It's an excellent quality product and they have others you can order online.

3. https://healer.com/about-us/ educational programs. I need to take their education programs and determine the correct dosage for my arthritis and radiculopathy pain.

These are good sites with reliable products and information. I have tested these links now and they work.

Gail
Volunteer Mentor

Jump to this post

@gailb I meant to say how long will you get relief from 1bottle?

@gailb

For those who are interested in using CBD as a pain reliever, here are two websites that provide excellent quality products and one has an extensive educational programs that are free. One series of education helps each person determine their own dosage for their problems.

1. http://www.cbdlivingwater.org — has good products. I used the Living Water to help me withdraw from Tramadol.

2. https://mjstherapeutics.org — this is where I purchased my CBD Daily tincture. It's an excellent quality product and they have others you can order online.

3. https://healer.com/about-us/ educational programs. I need to take their education programs and determine the correct dosage for my arthritis and radiculopathy pain.

These are good sites with reliable products and information. I have tested these links now and they work.

Gail
Volunteer Mentor

Jump to this post

@lioness

Each bottle has 2 servings/doses. I found relief for my anxiety by drinking 1/2 bottle. But I used the second half within about 3 or 4 hours. You will have to experiment and find out what it will take for you. See how you do with 1/2 the bottle first time. You should notice an effect within 20 minutes or so. If you don't notice an effect after an hour or so, then try more of the bottle. The feeling is very calming. Please let me know how things go.

Gail
Volunteer Mentor

Liked by lioness

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